tag:blogger.com,1999:blog-80285945378130068722024-03-16T03:07:59.862-04:00My Teen is an Old Lady Who Turns Purple (& her little brother has arthritis, too)*My 13 yr old is an old lady that turns purple*
My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.comBlogger203125tag:blogger.com,1999:blog-8028594537813006872.post-44228405655659908802016-10-19T20:03:00.001-04:002016-10-19T20:03:09.923-04:00First post of 2016! Update<!--[if gte mso 9]><xml>
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<span style="font-family: "Arial",sans-serif; font-size: 14.0pt; line-height: 200%;">I know, it’s been forever since I’ve written.<span style="mso-spacerun: yes;"> </span>So long, in fact, that I don’t even consider myself a writer at this point.<span style="mso-spacerun: yes;"> </span>I’ve had so much going on outside of the kids’ health that I just fell out of practice.<span style="mso-spacerun: yes;"> </span>So, a quick catch up.<span style="mso-spacerun: yes;"> </span>I’m kind of excited!</span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 14.0pt; line-height: 200%;">Zach is doing pretty well right now.<span style="mso-spacerun: yes;"> </span>They determined that he had a pannus, which is a large pocket of inflammation in his C2, the second vertebrae down in the neck.<span style="mso-spacerun: yes;"> </span>The meds he is on have reversed the pannus.<span style="mso-spacerun: yes;"> </span>He still has some residual damage that makes it stiff often, but he is doing much better than he was.<span style="mso-spacerun: yes;"> </span>Three month’s worth of physical therapy helped him to regain quite a bit of range of motion.<span style="mso-spacerun: yes;"> </span>Otherwise, he’s a pretty happy kid!</span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 14.0pt; line-height: 200%;">Emily was thought to be in remission, but now we know she wasn’t.<span style="mso-spacerun: yes;"> </span>With her disease, she does not have any characteristics that would point to any joint destruction.<span style="mso-spacerun: yes;"> </span>Most people with MCTD don’t have <span style="mso-no-proof: yes;">destruction</span> if I remember right from my researching.<span style="mso-spacerun: yes;"> </span>She does.<span style="mso-spacerun: yes;"> </span>Her jaw is a mess.<span style="mso-spacerun: yes;"> </span>We meet with a TMJ doctor this coming Tuesday.<span style="mso-spacerun: yes;"> </span>We are anxiously awaiting it.</span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 14.0pt; line-height: 200%;">We have some work to do on her.<span style="mso-spacerun: yes;"> </span>One thing that has been driving me crazy about her is that when you suggest she try something new, or that she has tried before, she will tell you, “no thanks.<span style="mso-spacerun: yes;"> </span>That doesn’t work.”<span style="mso-spacerun: yes;"> </span>That is the response for everything.<span style="mso-spacerun: yes;"> </span>I have been trying to figure out how to help her, but it has been out of reach.<span style="mso-spacerun: yes;"> </span>I changed my major in school partially so I could better help her, but <span style="mso-no-proof: yes;">naturally,</span> it will take years to get where I can help her.<span style="mso-spacerun: yes;"> </span>The other problem has been her anxieties.<span style="mso-spacerun: yes;"> </span>I have finally realized that they aren’t going to just go away.<span style="mso-spacerun: yes;"> </span>In fact, if anything they are getting worse. <span style="mso-spacerun: yes;"> </span>We chatted with a med student a couple months ago who told us how he battled terrible anxiety for years, but he eventually overcame it.</span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 14.0pt; line-height: 200%;">I decided that we needed to take the plunge and try psychology again.<span style="mso-spacerun: yes;"> </span>Our last psychologist was very sweet and I liked her a lot, but she and Emily never really hit it off.<span style="mso-spacerun: yes;"> </span>They didn’t click, and we made almost no progress.<span style="mso-spacerun: yes;"> </span>After a year and a <span style="mso-no-proof: yes;">half</span> she was still stuck on Emily’s sleep habits.<span style="mso-spacerun: yes;"> </span>Well, perhaps the problem is <span style="mso-no-proof: yes;">partially</span> with her anxiety, and by addressing that we will make progress.<span style="mso-spacerun: yes;"> </span>Our GI doctor suggested we try the psychology department at her hospital.<span style="mso-spacerun: yes;"> </span>Even though it is so far away we decided to jump in.<span style="mso-spacerun: yes;"> </span>We had her first session yesterday.<span style="mso-spacerun: yes;"> </span>Emily was immediately comfortable with her- enough to let me leave the room!<span style="mso-spacerun: yes;"> </span>That’s huge!<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 14.0pt; line-height: 200%;">The other big things I have been contemplating for a while.<span style="mso-spacerun: yes;"> </span>It begins with a visit to her pain management doctor last week.<span style="mso-spacerun: yes;"> </span>We have been anxiously awaiting this appointment for a while because Emily decided that she wanted to change her sleep medicine to an anti-anxiety medicine.<span style="mso-spacerun: yes;"> </span>She almost didn’t speak up, but <span style="mso-no-proof: yes;">fortunately,</span> I did when I saw the opportunity slipping away.<span style="mso-spacerun: yes;"> </span>I told Em that this was for her, and if she wanted change then she needed to ask for it.<span style="mso-spacerun: yes;"> </span>She cried a little because she was nervous, and I think because she had her hopes up, but it worked.<span style="mso-spacerun: yes;"> </span>She will be weaning off of her sleep med and starting Lexapro by next Thursday.<span style="mso-spacerun: yes;"> </span>I am really hoping this will help her as much as it has helped others.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 14.0pt; line-height: 200%;">Also, one of our rheumatologists had mentioned that we should ask our pain doctor about her intensive therapy and pain program.<span style="mso-spacerun: yes;"> </span>It’s hardcore- an hour of physical therapy, an hour of occupational therapy, and an hour of cognitive behavioral therapy DAILY for 4 or so weeks, along with a family meeting with all of the doctors and therapists weekly.<span style="mso-spacerun: yes;"> </span>I wasn’t sure how we could make it work before, but I have decided after watching the video on their site and talking to people that we NEED this.<span style="mso-spacerun: yes;"> </span>The cognitive behavioral therapy will help readjust her mindset.<span style="mso-spacerun: yes;"> </span>That alone is huge.<span style="mso-spacerun: yes;"> </span>I feel this could be life-changing.<span style="mso-spacerun: yes;"> </span>We have an evaluation next week for it.<span style="mso-spacerun: yes;"> </span>I am hoping we can start the program right away.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 14.0pt; line-height: 200%;">We are watching her digestive system.<span style="mso-spacerun: yes;"> </span>They feel she has an unspecified esophageal dysmotility, but we are hoping it is maybe from her previous muscle relaxer.<span style="mso-spacerun: yes;"> </span>She was switched to a new one that shouldn’t interfere.<span style="mso-spacerun: yes;"> </span>We are hoping that helps.<span style="mso-spacerun: yes;"> </span>And that pretty much sums up most of it.<span style="mso-spacerun: yes;"> </span>I will try to not write so infrequently. It’s so hard since my Dad passed to even get on Facebook.<span style="mso-spacerun: yes;"> </span>There <span style="mso-no-proof: yes;">is</span> so much negativity and pain that I just cannot handle right now.<span style="mso-spacerun: yes;"> </span>I’m in a good place, but only because I forced myself to be.<span style="mso-spacerun: yes;"> </span>Aside from being sick this week, I’m doing pretty well, all things considered.<span style="mso-spacerun: yes;"> </span>I could use a long vacation and no bad news for a while, but I know I can’t win them all!</span></div>
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Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com2tag:blogger.com,1999:blog-8028594537813006872.post-5852844847488182642015-01-26T13:23:00.001-05:002015-01-26T13:33:01.530-05:00National Drug Facts Week- Medicine Safety<span style="background-color: white; font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif;">As a professional patient (or caregiver), some of the most important things that you have to worry about are medicine related. How many of you patients out there know the side effects of your medicines? How many of you understand what your medicines do? Do you know what to do if there is a problem?</span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Segoe UI, Helvetica, Arial, Lucida Grande, sans-serif;">-Side effects- Any pharmacist will tell you that you should read the leaflet that comes with your medicines </span><u style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif;"><i>every time you refill!</i></u><span style="font-family: Helvetica Neue, Segoe UI, Helvetica, Arial, Lucida Grande, sans-serif;"> A reaction will not always happen right away. Take antibiotics, for instance. Most of my (many) sinus infections, rounds of strep throat, tonsillitis, and bronchitis were handled by the antibiotics of the penicillin family. Suddenly, when I turned 21 I had a raging reaction. Antibiotics aren't the only class that may react the same way. Over several years of use, Plaquenil (hydroxycholoquine) can destroy your retinas. It does not happen overnight. I am sure there are others.</span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Segoe UI, Helvetica, Arial, Lucida Grande, sans-serif;">-What to do if you have a reaction? - If you are able to isolate it to one medicine, do not take another dose until you call your doctor or your pharmacist first. While the doctor's should know and understand side effects from their years of experience of writing prescriptions, pharmacist's understand the science behind them better. They can also tell you if any interactions exist between your medicines. For instance, many acid reducers cannot be taken with other medicines. Many medicines should not be taken with vitamins, like thyroid meds, which tell you to wait four hours before taking vitamins. Sometimes, one medicine may decrease the effectiveness of another, or may not mix well. It is always a great idea when you have a new medicine thrown in the loop to ask your pharmacist about interactions. Also, please be sure to tell your doctor about <i><u>ALL</u></i> of the medicines you may be taking, including vitamins. If you are a drinker or imbibe in recreational drugs, you really need to tell your doctor (and STOP THAT!). One of your medicines may really react and kill you. That would be a very dangerous gamble. It is very important for your doctor to know what you are taking. Sometimes it is very difficult to keep track of your meds. We began making up lists. We take them everywhere we go. We bring multiple copies when we have our hospital days. Here is a sample: </span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXlivCG9kYMCDPFiwWAyz784gYWuJwTTx0mqJA2RK93HsUxtif4k-Z7oFUHZjPnvmkwwEbDnbl67EHwnbw6JQ5bRs8h1LOelQzfxOaFH_J1oDJcscIb1Kq01ih2h8MRCcKDDjW4q3r-bQ/s1600/Sample+Med+List+pic.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXlivCG9kYMCDPFiwWAyz784gYWuJwTTx0mqJA2RK93HsUxtif4k-Z7oFUHZjPnvmkwwEbDnbl67EHwnbw6JQ5bRs8h1LOelQzfxOaFH_J1oDJcscIb1Kq01ih2h8MRCcKDDjW4q3r-bQ/s1600/Sample+Med+List+pic.png" height="640" width="360" /></a><span style="background-color: white;"><span style="font-family: Helvetica Neue, Segoe UI, Helvetica, Arial, Lucida Grande, sans-serif;"><br /></span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Segoe UI, Helvetica, Arial, Lucida Grande, sans-serif;">-Understand your medicines- My daughter was very young when she first became ill. As she grew and we discovered more about her diseases, we tried to explain them to her, in an age-appropriate way. She did NOT like taking medicines, and she would often flat-out refuse. The way that I was able to get her to take her medicines was by explaining to her what they did. I would ask as many questions as I could about her meds, I read the leaflets, but I also took it a step further and did my own research on them. I would take what I learned, and then tell her how they were supposed to help her. If she didn't want an antibiotic, I would point out that would help her to feel better, and make her not so sick anymore. At the same time, you need to know how to take your medicines properly. Should you space them out exactly? Do you have to avoid certain foods, like broccoli on blood thinners? What happens if you accidentally take an extra dose? Do you have the number for Poison Control handy? (If you don't, it's: </span></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif;">1 (800) 222-1222)</span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif;">-Use a pill tray, but double check it.- We make sure to use pill trays in this house. There are various trays out there, some for one day, some for a week, some with AM/PM, others have 3 rows. The <a href="http://www.arthritis.org/" target="_blank">Arthritis Foundation</a> has easy-to-open trays for those who have problems with their hands. Pill trays keep you organized, and help you to know that you have taken your medicine. I often have those moments of, "did I take my morning meds today?" A pill tray prevents me from taking them twice, or at least helps me to not mess it up.</span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Segoe UI, Helvetica, Arial, Lucida Grande, sans-serif;">I don't think that I mentioned this on here before, but right around Christmas we had a big scare. Emily has been on Nifedipine for years for her Raynaud's. It had gotten so bad that her quality of life was greatly diminished because of it, and the Nifedipine was a perfect addition with the high doses of Prednisone she was on back then. (Pred raises your blood pressure.) Eventually it stopped working so well, and they doubled her dose. Our pharmacy changed the appearance of her Nifedipine several times in a six month period. One month, they made them white. Since about half of her meds are white, she did not notice it when she filled her tray at her next refill. The new bottle went back to mustard, so she didn't even think about it until after she took it. Thankfully she <i>did </i>realize it. I spent quite a while on the phone with pharmacy, our on-call doctor, poison control, and then finally at the ER, who also called Poison Control. We hung in the ER until 6 A.M. Fun times! At least there she was well monitored. One of my biggest worries was that she would fall asleep and not wake up. </span></span><br />
<span style="background-color: white;"><span style="font-family: Helvetica Neue, Segoe UI, Helvetica, Arial, Lucida Grande, sans-serif;">As wonderful as modern medicine can be, there is always a risk if it is not taken appropriately. Please make sure that you are taking your medicines properly, and educate yourself on them. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Helvetica Neue, Segoe UI, Helvetica, Arial, Lucida Grande, sans-serif;">Some handy resources are: <a href="http://www.aapcc.org/" target="_blank">American Association of Poison Control Centers, </a> <a href="http://www.empr.com/" target="_blank">Medical Prescribing Reference, found in doctor's offices all over,</a> and <a href="http://www.drugs.com/" target="_blank">Drugs.com. Our doctor's also use this.</a> Also, the <a href="http://www.recallcenter.com/" target="_blank">American Recall Center</a> would like you to think of them. They are a great resource! They also wanted to make everyone who is on Xarelto, a popular blood thinner, aware of problems that have recently been reported. They now have the <a href="http://www.recallcenter.com/xarelto/side-effects/" target="_blank"> Xarelto Side Effect page</a>.</span></span>Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com1tag:blogger.com,1999:blog-8028594537813006872.post-77718187317953692002014-12-15T21:02:00.000-05:002014-12-15T21:02:44.081-05:00All is Well!Oh, for once I can say that it's wonderful to not be writing much! I write much more when things are going wrong. Lately, everyone is doing pretty well!<br />
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I truly feel that all of the work that we put into getting Emily on growth hormones has helped tremendously. She has been so much better. In fact, we are supposed to try stretching her Remicade and IViG infusions out from every four weeks to every five weeks! I am so excited about that!!! We have waited a couple of months to make sure she was doing as well as I thought she was, and I feel pretty confident now. I got her a gym membership. Now all I have to do is drag her there with me. LOL!<br />
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Zach is doing well. His asthma started flaring, but at least we have everything we need for that. He had one month where his joints were red and swollen, but they have evened back out. His rheumy (who is leaving us!) mentioned that we would likely be asked by the other members of the group to decrease his meds when the warmer weather comes. In sunny Florida, we also have very high humidity levels. They can be overwhelming for some things, but it's good for psoriasis, asthma, and Sjogren's! Hopefully around March we will drop his Methotrexate injections, and then consider dropping his Enbrel to once a week instead of twice a week. <br />
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My oldest and my hubby are doing well. :) I've been plodding along. I had quite a flare for about 2 months, but I think I am past it now. I've been hanging at the gym because it makes me feel better. I just finished one of my easier semesters at school, but next semester is going to be hell. I will likely not write at all through the next semester. Things are good, though. Eyes are good, lungs are good (except for the asthma), and the kids are happy. We just finished our homeschool year, so the kids are on a short break until the new year. Life is good! <br />
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Lastly, Emily turned 13!!! She had a nice birthday. We celebrated over 2 days; one day was quietly spent at home, and another day we went to an amusement park for the day. We all had a great time! So, now to change the blog name. Shall I change it to "My 13 Year Old is an Old Lady Who Turns Purple" or "My Teen is an Old Lady..."? Decisions, decisions. It may be hard in a google search if I change it to teen, but then I won't have to change it again for another seven years. Thoughts? Let me know! :) I hope y'all are doing well!Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-26957480270889778802014-09-11T16:50:00.001-04:002014-09-11T22:26:34.430-04:00Stable!<span style="font-size: large;">I know- it's been forever since I have written. Life has finally evened out, but for a little while it was so odd and difficult that I didn't really know what to say. We kept having more problems with no reasons, and I just simply didn't feel positive enough to post. Emily was really doing poorly, and I didn't really have any good answers. I knew that there had to be something that was being overlooked. The problem with having so many specialists is that they are just that- specialists. ENT doesn't know much about gastroenterology; endocrinology doesn't either. To get everyone on the same page can be a real challenge that requires quite a bit of persistence.</span><br />
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<span style="font-size: large;">I'm sure some of you were thinking, "what the heck is she doing?" Or, "does she want the kids to have more doctors?" Totally not. It almost drove me crazy. What we did do is take a chance. And it seems to be working. </span></div>
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<span style="font-size: large;">We got ENT involved. We had to subject her to another sinus culture, which she actually wanted. She wanted that crap sucked out. What we found is that she did not have a year-long sinus infection; it was all due to reflux. The ENT suggested we use a hyper-tonic saline, & follow-up with GI. So we got with her gastroenterologist. They scoped her. They think she may have EoE, eosonphilic esophagitis, but while she is still on steroids we won't have an accurate scope. They suggested we change her Prilosec to twice a day, which I had wanted anyway. She is now doing so much better!!! She hasn't really been "sick" in a while, and she can eat. Hooray!</span></div>
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<span style="font-size: large;">The other thing that y'all may have thought I was crazy about- growth hormones. While I hate having to give her a shot nightly, this has been such a blessing. She never agrees with me when I say this but she seems to be so much better. She seems to feel less pain, which is a big reason we wanted to start her on the GH. It also doesn't hurt that she is finally growing, after years of little to no growth. It has truly been a Godsend. I had to be pushed into it, and I am so grateful to those that pushed and helped me to research it so I knew what to look for to get the ball rolling. Next step is a gym membership so they can get a good daily workout, hopefully with other kids. </span></div>
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<span style="font-size: large;">Emily had an amazing time at camp! We are so grateful to her camp and the Arthritis Foundation. She really loved her cabin mates this time. It is such a huge blessing to see her happy and shining. </span></div>
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<span style="font-size: large;">Zach is doing better than most, but he was warm and slightly swollen all over at his last appointment 2 weeks ago. All of his pertinent labs looked good, so now we are just watching him. Overall we can't complain. He's been on Enbrel since February 2011 (I think), and holding steady. The weekly methotrexate really seems to help. He's one of the lucky kids that has no side effects. </span></div>
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<span style="font-size: large;">Tomorrow we see a new opthamologist. Our rheumies want both kids checked for Sjogren's symptoms. Emily's labs are positive for it, and both kids have had dry eyes. Hopefully that will be good. Overall, things are good! I love quiet and boring, but it certainly doesn't lead to a productive blog. We have simply been enjoying it. :). I'll post as things happen, but for now we are enjoying the quiet. <3</span></div>
Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-19257052457768447982014-05-22T12:30:00.000-04:002014-05-22T12:30:00.979-04:00The GI appointment<div>
<span style="font-family: Verdana, sans-serif;">Before I begin my post with our news, may I ask you to pray for our friend Parker and his family? Parker is having a very, very tough time right now. He needs as many prayers, positive thoughts, or anything else you can throw his way, as he can get. His family needs some peace and strength, too. You can <a href="http://purpleplayapower.blogspot.com/" target="_blank">follow his story</a> here.</span></div>
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Okay, so when Emily had her swallow study a couple of weeks ago, I knew it wasn't right. For a minute there I thought they were playing with the camera. I realized that more comes up than goes down when she drinks. I actually cried watching the camera, thankful that she couldn't see me. She was standing up, swallowing hard, and still nothing would clear until she had some water. Not what I wanted to see. </span><div>
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<span style="font-family: Verdana, sans-serif;">Because our rheumy group is amazing, they set up an "emergency" appointment with a new GI doc. The nurse practitioner emailed me about that Wednesday, and by Thursday we had an appointment set for the following Monday. I worried a bit about how the doctor would be, but when I pulled up his profile I saw that he was the head of the department for feeding disorders, and he writes the curriculum for the school that his office is affiliated with. </span></div>
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<span style="font-family: Verdana, sans-serif;">The first thing that the doctor asked me after he introduced himself was, "how can I help you?" For just a minute there, I was worried. I explained that I just want her to be able to eat. He said that he had already looked through her file. He asked me if anyone had mentioned a problem artery to me. Ummmm, no. Apparently, she has what they call an "aberrant subclavian artery". This means that there is an extra artery that snakes around behind the esophagus. (Below is the exact picture the doctor showed us.) This by itself can cause all sorts of really awesome problems like chronic respiratory infections and problems swallowing. <a href="http://rarediseases.info.nih.gov/gard/5706/aberrant-subclavian-artery/resources/1" target="_blank">The NIH Rare Diseases page </a> says this about it: </span></div>
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<span style="font-family: Verdana, sans-serif;"> </span><strong style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18px;">Aberrant subclavian artery</strong><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18px;"> is a rare vascular anomaly that is present from birth. It usually causes no symptoms and is often discovered as an incidental finding (such as through a </span><a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a606010.html" style="background-color: white; color: #003d79; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18px;" target="_blank">barium swallow</a><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18px;"> or </span><a href="http://www.nlm.nih.gov/medlineplus/ency/article/003869.htm" style="background-color: white; color: #003d79; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18px;" target="_blank">echocardiogram</a><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18px;">). Occasionally the anomaly causes swallowing difficulty (dysphagia lusoria).</span><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 0.5em; line-height: 0; position: relative; top: -0.5em; vertical-align: baseline;"><a href="http://rarediseases.info.nih.gov/gard/5706/aberrant-subclavian-artery/resources/1#ref_3696" style="color: #003d79;">[1]</a></span><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 0.5em; line-height: 0; position: relative; top: -0.5em; vertical-align: baseline;"><a href="http://rarediseases.info.nih.gov/gard/5706/aberrant-subclavian-artery/resources/1#ref_3697" style="color: #003d79;">[2]</a></span><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18px;"> Swallowing symptoms in children may present as feeding difficulty and/or recurrent respiratory tract infection.</span><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 0.5em; line-height: 0; position: relative; top: -0.5em; vertical-align: baseline;"><a href="http://rarediseases.info.nih.gov/gard/5706/aberrant-subclavian-artery/resources/1#ref_3697" style="color: #003d79;">[2]</a></span><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18px;"> When aberrant subclavian artery causes no symptoms, treatment is not needed. If the anomaly is causing significant symptoms, treatment may involve surgery.</span><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 0.5em; line-height: 0; position: relative; top: -0.5em; vertical-align: baseline;"><a href="http://rarediseases.info.nih.gov/gard/5706/aberrant-subclavian-artery/resources/1#ref_3696" style="color: #003d79;">[1]</a></span><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 0.5em; line-height: 0; position: relative; top: -0.5em; vertical-align: baseline;"><a href="http://rarediseases.info.nih.gov/gard/5706/aberrant-subclavian-artery/resources/1#ref_3697" style="color: #003d79;">[2]</a></span><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18px;"> Children with symptomatic aberrant subclavian artery should be carefully evaluated for additional vascular and heart anomalies.</span><span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', Arial, Helvetica, sans-serif; font-size: 0.5em; line-height: 0; position: relative; top: -0.5em; vertical-align: baseline;"><a href="http://rarediseases.info.nih.gov/gard/5706/aberrant-subclavian-artery/resources/1#ref_3697" style="color: #003d79;">[2]</a></span></div>
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<span style="font-family: Verdana, sans-serif;">So, because that's never quite enough with us, he also points out that just because she has that doesn't mean it is the culprit. It is likely from the scleroderma side of the Mixed Connective Tissue Disease, but it could also be gastroparesis, which is where the stomach doesn't empty properly. For more info on this, I went to <a href="http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/" target="_blank">my trusty friends at NIH</a> again. </span></div>
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<span style="font-family: Verdana, sans-serif;">How can we distinguish which problem may be causing this? More tests! This was one of the two things that we somewhat expected. Em & I had talked about how she would probably need another upper endoscopy so they could really figure it all out. (We assumed it was from the esophogeal separation, and would need to be stretched with a balloon.) Not only does he want that done, (minus the balloon) but he also wants a different type of swallow study done. Instead of drinking barium, they have you eat something like eggs with radiation. (UGH!!!) If we didn't really need her to eat I would be against this, but we have to figure out what needs to be done. Hopefully she will have these tests with her next hospital overnight. We go back on June 2nd & 3rd. On June 4th we have her endocrinology follow-up; it will be the first one since she started the hormones. </span></div>
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<span style="font-family: Verdana, sans-serif;">She is still having some wicked headaches, but we think that they may be from the sinus issues. Tomorrow she will be heading to our ENT's office for a sinus culture and suction under anesthesia. We are hoping he may have some answers for this. I feel like she may need a prophylactic antibiotic. She is sick more than she is well. Perhaps that won't be possible with the artery issue. Maybe she is just going to have to deal with being sick constantly forever because of it. I don't know. I discovered that if she has gastroparesis, sometimes low doses of </span><span style="background-color: white; color: #333333; line-height: 19.440000534057617px;"><span style="font-family: Verdana, sans-serif;">erythromycin help. I hope she does not have gastroparesis, but if she does maybe we can kill two birds with one stone there. Hopefully by having her appointment now, her IgG levels will be high enough to not knock her back, and there will be enough time between this procedure and her endo appointment to really be able to tell if the headaches are sinus or hormone. We are also hoping that her levels are staying high enough consistently for them to stop her IViG (platelets via infusion at the hospital). That would eliminate the overnight hospital visits, and really make our lives much easier. We shall see, I guess. We are staying hopeful that we are on the right path, just with our usual bumps in the road.</span></span></div>
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<span style="background-color: white; color: #333333; line-height: 19.440000534057617px;"><span style="font-family: Verdana, sans-serif;">Zach is doing well. :) For that we are very fortunate. I will update more when we know more, or to point you towards Parker's page for his next update. Please pray for all of their family and ours? Thank you. </span></span></div>
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Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-15269495651595828552014-05-19T00:46:00.001-04:002014-05-19T00:55:35.627-04:00World Autoimmune Arthritis Day!<span style="font-family: Verdana, sans-serif;">Greetings!</span><br />
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<span style="font-family: Verdana, sans-serif;">I would like to invite you all to come join me for a live blog chat/ interview from 7 P.M. to 8 P.M. EST for World Autoimmune Arthritis Day. Because it covers several countries and time zones, the event starts on May 19 and runs until May 21st. There will be many, many features. Here is a little intro video for it. <a href="https://www.youtube.com/watch?v=6rNUsU3Exdk&feature=youtu.be" target="_blank">Here is the official YouTube event video.</a> </span><br />
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<a href="http://www.worldautoimmunearthritisday.org/" target="_blank">This link brings you to the home page for World Autoimmune Arthritis Day!</a> The page puts it this way:<br />
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<span style="background-color: white;"><i> <b><span style="font-size: large;">"<span style="font-family: 'Century Gothic', AppleGothic, Arial, sans-serif;"><span style="color: #56aaff;">Have you registered yet for World Autoimmune Arthritis Day 2014 (WAAD14)?</span><span style="color: blue;"> </span></span><span style="font-family: 'Century Gothic', AppleGothic, Arial, sans-serif;"><span style="color: blue;"> WAAD14 is 100% ONLINE, which means you can join the convention from anywhere there is an internet connection. It is designed for ALL people to attend, regardless of location and physical lim itations- all you need is a computer.</span></span></span></b></i></span><br />
<span style="background-color: white;"><span style="color: blue; font-size: large;"><b><i><br style="font-family: 'Century Gothic', AppleGothic, Arial, sans-serif;" /></i><span style="font-family: 'Century Gothic', AppleGothic, Arial, sans-serif;"><i>The convention site is built just like you are at a physical convention site, with booths to visit, Exhibition Halls, live Presenters (via "Live Chats"), and specialty features, such as this years' major event: A Day in the Life of an Autoimmune Arthritis Patient where patients can invite supporters to 'walk in my shoes for a day' by participating in challenges that mimic those faced by patients on a daily basis. "</i> </span></b></span></span><br />
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<span style="background-color: white;"><span style="font-family: Verdana, sans-serif;">I was a part of this event two years ago. This non-profit was brand new back then. They have come a long way! The founder, Tiffany, realized quickly after her initial diagnosis that people did not understand autoimmune arthritis at all, and that everyone seems to equate it to osteoarthritis. While the two couldn't be more different, it takes educating people to make them understand it. This reason is also why I blog. It started out as a way to vent, until I realized that I was helping people. I can assure you, that is NOT what I expected, but it's pretty cool! :) Anyway, please join me! If you can't join me, there are many other people who are also doing live chats and interviews. You have the opportunity to have questions answered. It's volunteer run, and really has become quite the event. Please join us if you can! The registration info is below. I hope that you can join us!</span></span></div>
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<strong>$5.00 USD Pre-Registration</strong>Entrance Fee to Live Event</div>
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May 19<sup>th</sup> 6am ET/USA-May 21<sup>st</sup> 5am ET/USA</div>
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& Access to Booths & Resources through May 31<sup>st</sup></div>
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<strong>$7.00 USD</strong> Entrance Fee During Live Event</div>
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May 19th 6am ET/USA-May 21st 5am ET/USA</div>
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& Access to Booths & Resources through May 31<sup>st</sup></div>
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<strong>FREE</strong> to Skip the Live Event</div>
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Access to Booths & Resources from May 21<sup>st</sup> at 5am ET/USA through May 31<sup>st</sup></div>
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Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-12618819840215995022014-05-14T15:55:00.000-04:002014-05-14T15:55:22.575-04:00Our last hospital visit. Ugh.I've had a few days to ponder and mull now. I still feel a little numb, and just exhausted. My Facebook friends know <i>most </i>of this, but I didn't want to leave anyone out.<br />
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I had emailed the nurse practitioner at our rheumies office last Monday, in preparation of our visit that Thursday and Friday. She spoke to the doctor, and we all agree that she needed a new swallow study done. Emily had told me that she feels like there is a bubble in her throat when she tries to swallow. Hmmm. Since she had started to get stuffed up again (on antibiotic number 2 for the month), I mentioned that, as well as the headaches she has been having. I assume they are either from the sinus infection from hell or maybe from the growth hormones. <br />
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I wasn't going to tell her about the upper GI until right before. I asked for Xanax for her. She never uses that stuff except for medical testing. She just freaks out. It's bad. I guess that everyone thought I was overreacting. Nope! It was supposed to be outpatient at 11, but knowing how difficult it would be to get us out on time, they made it inpatient at 11:30. She woke up on Friday morning to the nurse telling her it was time to go downstairs for the test. She got herself so worked up that she almost hyperventilated. She cried for a good hour. She didn't calm down until someone finally got her a 1/2 a Xanax, but it was too late by then. She was rescheduled for 3:30, though no one told the scheduler downstairs. We were discharged at 1:30, so we had time to kill. We couldn't really leave, and since she couldn't eat, we tried to avoid all of the food places. <br />
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They told me to give her another 1/2 Xanax around 3. Despite having one full Xanax in her, when they took her back she still had another hour meltdown. I can't blame her. <b><i>She has no control,</i></b> no say in any of this. It sucks. If I didn't suspect it was bad, I never would have pushed. <br />
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After she finally calmed down, she worked with them to help herself. She asked to be slightly elevated. I watched the barium start to go down, then back up, several times. At one point, I thought the camera was showing something else, or glitching. Nope. What it basically showed is that she has, as the nurse practitioner emailed it, "<span style="background-color: white; font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; font-size: 15px;">Her study showed severe reflux and little motility of her esophagus."</span> Hmmm. I suspected as much, but it still hurts to see it. At the moment, that is really all that I know. This is in conjunction with her patulous esophagus, which if you missed it, means that the muscles at the base of her esophagus have dilated and spread away from her stomach. <sigh>. Well, this explains why she doesn't eat.</sigh><br />
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At the same time, she has spent 30 days on Augmentin and 10 days now on Clindamyacin, and she is still sick. She had an x-ray last week that showed she is still gunked up, so the ENT is working on getting an authorization from rheumie to get this expedited so they can culture her and suck out the junk up there. I really, really think she needs to be on a prophylactic antibiotic. Then maybe we could stop IViG, and maybe not have to sleep over the hospital every month.<br />
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But, wait! There's more. I have noticed for the past couple of months that her ALT (muscle enzyme) has been a tad elevated. I'm no longer the one to panic at the first sign of trouble, so I've just been keeping an eye on it. However, Monday her thighs hurt badly- like a 6-7 on the pain scale. That could mean that her dermatomyositis is also coming back, which would mean adding Prednisone back in. We really, REALLY don't want to do that. It makes me so sad.<br />
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If all of that wasn't enough, they ran her cortisol levels on Thursday morning before she had any of her hydrocortisone. A normally functioning adrenal system will have a count of 10 or higher. She was only at 1.3, so the hydrocortisone stays for now. And the final kicker was the email from camp that she is on the wait list for both sessions. At least we had a few good months. Hopefully this will all pass quickly. I guess we need to find a set Gastroenterologist now. We've seen a couple before, but mostly as favors to our rheumies. We don't really have anyone set. Hopefully endo will be able to help her more with the cortisol, and ENT will see her fast to help her sinuses. Please pray that all of this comes together just right. Thank you.Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com2tag:blogger.com,1999:blog-8028594537813006872.post-63735194923007475442014-05-08T20:23:00.000-04:002014-05-08T20:23:52.958-04:00Pain management and coping techniques<div style="text-align: center;">
<span style="font-size: large;"><b>Pain Management and Coping Skills</b></span></div>
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<span style="font-size: large;">Pain management has been somewhat of a hot topic lately. Since I am on a little vacation, now seemed like a great time to talk about it. When one has chronic pain, one needs to figure out what works for them to help deal with it. We have found several things through the years.</span><br />
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<b><i><u><span style="font-size: large;">Baths and water activities</span></u></i></b><br />
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<span style="font-size: large;">Emily loves her baths. Warm baths have a way of taking some of the tenderness out of sore joints and muscles. Sometimes we use epsom salts, which are known to help quite a bit. Sometimes we use a scent that she really likes, like lavender. Sometimes we use arnica oil, which is also really good for drawing out pain. On really bad days she will use the epson salts in combination with an oil.</span><br />
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<span style="font-size: large;">Water activities, like aquatherapy or water aerobics, are also quite helpful! The joints are supported better by the water, causing less pain but a harder workout. Many people that won't do a traditional workout will at least go walk around in the pool. It is especially useful for people that have severe osteoporosis in their knees.</span><br />
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<span style="font-size: large;"><b><i><u>Paraffin baths</u></i></b></span><br />
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<span style="font-size: large;">There's nothing like hot wax to help take the inflammation out of the hands. Paraffin baths come in a variety of sizes, some with adjustable heat settings. We have also found that you can add things into the wax, such as soothing oils. We added some lanolin and essential oils to ours. The longer you can hold the heat in, the better it will work. It can be used for hands and wrists or feet and ankles.</span><br />
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<span style="font-size: large;"><b><i><u>Essential oils</u></i></b></span><br />
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<span style="font-size: large;">Yes, we were very skeptical at first. We really did not put much faith into them to begin with. I know children that need morphine. While they really needed it and it wasn't really by choice, it was an option that I did not want presented! Lidocaine patches have worked for others in the past, but they did not work for <i>my</i> children. We were running out of options, so we thought we would take a chance. I still cannot believe how well the doTERRA Deep Blue works! We use many oils now for many things, but our favorites are definitely the Deep Blue, and their headache blend, Past Tense. Emily has a lot of headaches lately, partly because of her cortisol levels, partly because of the new hormones, and partly because of the sinus pressure the poor kid has in her head. The two oil blends have helped her more than anything. Also, the Deep Blue took her knee pain down to almost nothing. (Please feel free to PM me if you are interested! I am NOT a salesperson, but I <i>can</i> sell them if you are interested.)</span><br />
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<span style="font-size: large;"><b><i><u>Biofeedback and psychology</u></i></b></span><br />
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<span style="font-size: large;">I had never heard of biofeedback before, but it's actually pretty cool. When I was a kid, I was involved in every possible theatre class and production around. My wonderful music and drama teacher in high school taught us relaxation techniques. I tried to teach them to Emily, but, well, my last drama class was 1991. I searched for apps, but at the time I couldn't find them. I kind of let it go as a lost cause, until we started seeing our pain management doctor. She is <i>NOT</i> the type who wants to push pills. Quite the contrary; she did not want to <i>add</i> pills. She decided to send us to biofeedback and psychology both. Child psychologists are not the easiest to find, but child psychologists who deal with chronic pain patients seemed to be even more difficult. We finally found one, but we had a 2 month wait to be seen. We squeezed biofeedback in around psychology. This was the coolest thing!</span><br />
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<span style="font-size: large;">Maybe it isn't as amazing with adults because many adults have their minds set that this will not work. (That is what our specialist told us, anyway.) They talked. Emily was hooked up to monitors. Yeah, really. They attach sensors to the sweat glands, and then show you how nervous or calm you are on the screen. The great thing is that we could see that when we mentioned broccoli, her stress level shot through the roof. (Seriously. It's bad.) However, after learning a few techniques, she could also see her stress level go <i><u>down</u></i>. The cool thing about that is she could see how she could calm herself down. The great thing is that these are techniques that she can use for the rest of her life.</span><br />
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<span style="font-size: large;"><b><i><u>Movement</u></i></b></span><br />
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<span style="font-size: large;">I know- nobody wants to hear it. I know I don't. But it's true. The days that I don't move, I tend to hurt more. The days I make myself go to the gym, I have more energy and feel better. If you can strengthen the muscles around the bad joints, the joints will have better support and hurt less. Besides, we all know it is when we stop and try to re-start that we hurt the most. Emily has to play on the Wii Fit at least three times a week. I try to hit the gym as often as I can. And I kick Zach outside to play with his friends. </span><br />
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<span style="font-size: large;">I have an amazing friend, also from high school, who has lupus. She has had more back surgeries than I can bear thinking about. She is running marathons. Yeah. She totally puts me to shame. I've been thinking lately that if she can do it, I can do it. Right? Maybe in time....</span><br />
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<span style="font-size: large;">For our hands we use stress balls. Squeezing them can help to relieve some of the discomfort. It's also good therapy. Using your hands as much as possible is very helpful. It can be hard when your hands are aching, but even wiggling them is good. </span><br />
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<span style="font-size: large;"><br /></span>Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-33056429206229670382014-05-06T12:00:00.000-04:002014-05-06T12:00:02.955-04:00Free time!I apologize for my slacking off when it comes to posting. I am finally on summer break from school! It's been a very tough semester. I actually failed a class and then got a B in my other class. I don't approve of either, but I've had quite a bit to adjust to. I didn't even realize that it was stress until the semester was almost over. I'm praying this doesn't kill my honor society status!<br />
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If we were the type to give up, we would have given up on growth hormone quite a while ago. However, we stuck with it and she finally got it! It has been about 2.5 weeks. The down side is that she has had a major headache from it, so we agreed to skip a few days to see if the headache would go away. We are hoping that when she re-starts it, her doctor will approve a lower dose, and then gradually move back up. We have already seen some of the benefits: improved sleep, for one thing. It is also supposed to strengthen bones, which is wonderful considering that all of the years of prednisone can cause osteoporosis and brittle bones. I know that this is the right step; we just have to find the right mix here. <br />
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She has another sinus infection. If you read the last post, you may recall that we had a runaround trying to get her into the ENT for a swab and suction. She ended up getting better spontaneously on her own before we could get the authorization. Now she's sick again. She just had 30 days on Augmentin. She was sick again after a few days. Now she is on Clindamyacin again. I have another call into the ENT. <br />
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The other bit of Emily news is that, while we were at our pediatrician's office, she tells me that her throat is "bulging" again. Apparently it is difficult for her to speak, and to eat. The eating is hampered, but she also has too much reflux coming up, too. None of the usual meds seem to be helping, so I emailed our doctor to let them know in advance. This is a hospital week. It should be interesting. They are supposed to test her cortisol levels to see if we can start dropping hydrocortisone, and now they will also run an upper GI to see what is up with her throat. Also, she has been telling me this week that her muscles are bugging her. That <i><u>could</u></i> be from the growth hormone (we are hoping!), but it may not be. The last two visits I noted that her muscle enzymes were elevated. Not a huge amount, but definitely increased. I am hoping this will be just a fluke.<br />
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Zach is doing pretty well. Now that he's had a steady supply of Enbrel he is doing better most days. He's had a few days with a lot of back pain, a couple with knee pain, but overall he is good.<br />
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We are going to try the Paleo diet. I am definitely going to try the Whole 30 on the advice of two friends. While Emily is one of the pickiest kids in the world, and she would rather starve than eat broccoli, I am hoping that if I lead by example, they will follow. I really feel like this could help, but if I push, then I have no chance. I am not looking for a cure or a miracle; I'm not setting us up for a fall. However, I see correlations with food myself. I know that soda makes me more tired, it breaks me out, and I feel yuck. I recently realized that is the same for most sugar. I feel worse when I eat certain things. I had chips this weekend and now I hurt everywhere. I'm almost positive it's from the chips. So, perhaps if we cut all of that out, things will be better. The essential oils have been amazing, too! There is an oil for everything! Our favorite is doTERRA's Deep Blue. Especially when we use a friend's concoction and add more wintergreen and frankincense to it. Amazing! Now I see that many of my migraines were from my neck. It's been a fascinating couple of months! <br />
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I am hoping for a calm summer since we didn't get to do anything fun last year. This year I am hoping that we can go out on Friday's to do fun stuff! After this week... I will try to post from the hospital when we know more. Take care!Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-17739327409112713542014-02-13T20:11:00.001-05:002014-02-13T20:11:52.226-05:00Little updateI can't believe how long it has been since I blogged! Since last I wrote, we have seen the ENT to discuss a plan for the next time she gets sick. The plan has been that we call ENT when she gets sick to get her in for a culture. I really wanted them to culture so we could figure out what antibiotic would actually work. While they are in there, they want to suck out the extra crap that seems to never leave her sinuses in her forehead. I'm so over trying different antibiotics and her still getting sick when we stop. Unfortunately, that time is now but it hasn't all lined up. They sent the authorization to the wrong fax number, then when our rheumies got it, they only could make out half. Hopefully since we are at our rheumies now, that will get situated. She also recently saw endocrinology and had her growth stim test, which she failed miserably. We have an MRI scheduled for next week to rule out pituitary problems before we start growth hormone.<br />
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As of today, Emily has the go ahead from our rheumies to STOP PREDNISONE!!!!! That is HUGE!!! She has been on this steroid consistently since October 12, 2010. She has come a long way! She started on 42mgs. She was on the liquid, which is 15 mgs per 1 teaspoon (5mls). She was on 7mls twice a day, and currently she is on 0.2mls. I told the doc's that I would prefer to taper, so it will be a week or so before she is fully off. I am sooooooo excited!!! So is she! At this point, the risk outweighs the benefit. I showed our rheumie the cortisol levels from the growth stim test, and she was floored at how low they still were, despite hydrocortisone twice a day. The down side is that we have to increase hydrocortisone temporarily, but it is only temporary. She is still on a plethora of other immune suppressors, but eliminating one is a good start! No other news today, but if anything else has changed we will know by tomorrow. Her MRI is set for next Friday, so hopefully we can coordinate ENT before that.<br />
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Zach had an appointment today, too. We have been fighting to get his Enbrel for over a month now. Thankfully I tend to hoard medicine a bit, so we had some extra. I've been spreading them out, giving it to him every six or seven days, instead of twice weekly like it's supposed to be. Apparently it showed. Our rheumie and nurse practitioner both noted that he has more back pain and tenderness than he should. If his back is still that bad in 3 months at his next appointment he will have an MRI to see why. They also pointed out that he is hypermobile. That is one of those things that I don't (yet!) know much about. All I know from my fellow JA mom's is that it can be quite painful, and it can cause enthesitis, which is basically like inflammation of the tendons. Sounds like a good time, eh? Poor kiddo. Obviously, all of this shows that he is NOT ready to go off of Enbrel. In fact, we are also going from Methotrexate pills to the injection. I am really hopeful that once we get his Enbrel back on track, he will start to do better. Through the week it's hard to remember that he has arthritis, too. These are always painful reminders. <br />
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I'm doing pretty good. I'm finally off of Medrol (like Prednisone). The only down side to that is the neuropathy coming back, along with the joint pain. While my rheumy feels that my Sjogren's may turn into something else, his nurse practitioner is hopeful that it will not. I'm choosing to think she is right. :) In truth, aside from my right hand going numb every morning, and my one bum shoulder, the worst is the chronic fatigue. I am always sooooo tired. That aside, I am holding up well. I'm thankful that my symptoms are mild enough that they don't prevent me from doing what I need to do. <br />
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And that is that. I will try to find the time to update after the MRI and other important appointments. Thanks for following! :)Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com3tag:blogger.com,1999:blog-8028594537813006872.post-26823889233941930822013-11-27T01:22:00.001-05:002013-11-27T01:22:28.419-05:00And then there were threeA few years ago I started to notice some things about myself. I was turning pretty white when it got cold, I would get random pains bad enough that I almost drove us off the road a few times, and chronic fatigue. The fatigue was bad, really bad. I didn't have time to deal with it, so I pretty much just ignored it for a while. Until my shoulder decided to rebel. And then my knee stopped working for a few days. Then my hips started popping every day, and aching often. And my ankles started to feel like glass shattering when I would stand up. Eventually I brought it up to my doctor. He quickly dismissed me. He did a fast strength test on my hands and decided I was fine. After all, I was too young for Rheumatoid Arthritis, despite having two children with Juvenile Arthritis. Since it really took a lot for me to say anything at all, and my symptoms weren't bad, I didn't really argue. I told him that I was pretty used to being invincible but something was starting to happen to me. I told him I felt like we had to catch it before it got bad because I don't have time to be sick. He nodded politely and sent me on my way. <div><br></div><div>Eventually I gave up. He wasn't listening. By this time I had new stuff- my right hand was going numb every single morning, and my right foot would go numb when I was about due for my vitamin B shot. Eventually I noticed it would still go numb after my shot. Then my hands started "cramping". That started to affect my work and my schooling. I knew it was time to move. I finally got myself a new primary care doctor, with a little urging from several JA friends. I guess at this point you could say that I wanted to be tested but I didn't really believe I had anything serious going on. I mentioned my kids' illnesses to the new doctor, but I didn't tell her I suspected RA for me. When I started telling her about my hands she immediately asked if I had been tested for it. I explained that our old doctor didn't feel it was possible. She actually listened. I felt totally comfortable with her. It was nice!</div><div><br></div><div>Even though she felt that I probably had the start of it, I still dragged my feet on seeing a rheumatologist. My labs weren't pointing clearly to anything in any direction, and I still didn't feel like I was bad. I finally made myself go two weeks ago. My rheumatologist was hoping that steroids would do the trick and it would disappear. He said that he sees about one person a week that has such a mild case that steroids alone kick it out and they never come back. I hoped I would be that case! Nope. My shoulder is about 50% improved, but my wrists tonight are aching enough to keep me up. My knee is still not happy. So, they also ran additional labs. They ran a few that I hadn't seen before. I didn't really have time to look at the prescription, but we talked about it Monday. I tested positive for both Sjogren's tests. And suddenly it all makes sense. The neuropathy, the lighting bolts I sometimes feel shooting down my arm, my anemia, and even my thyroid are likely all related to it. And then there is the leaky eye that I thought was a blocked tear duct. That is most annoying. I have made my peace with it over the past 24 hours. At least I have some answers. We are going to try Plaquenil to see if it helps. It may take 4-6 months to kick in, but if it helps to keep me from getting really sick it is worth a shot. The PA said that because I don't have high inflammation counts I will not likely see deformities or even a lot of degeneration of the joints. I guess if I have to have RA, this would be the way to go. I'm a little sad, but I am determined to stay on top of it and beat it. My kids have been such examples for me. I have to be strong for them. </div><div><br></div><div>I still have like the best family ever. That really helps to keep me sane. My kiddo's are all amazing in their own way, and I cannot even believe how much I love and like my husband. I still consider myself blessed. Just burdened. :p </div><div><br></div><div>I am spending the next two days cooking! I hope that everyone has a wonderful Thanksgiving! Take care & God bless!</div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div>Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com1tag:blogger.com,1999:blog-8028594537813006872.post-8056582991034291942013-11-14T22:31:00.000-05:002013-11-15T12:26:36.525-05:00Lots to be thankful forSometimes it hits me how surreal our life is. Sometimes I realize how not-normal our "normal" is. Sometimes I feel worried, scared or nervous about how our kids are doing, but then we walk through this cancer ward and it really puts things into perspective. We see mothers crying in the hallway because their children are given a terrible prognosis. Children that look more ill than any old person that I have seen are not even allowed to leave their rooms for fear of germs. These are the days where I really embrace all that we really have. Our home life is better than probably 80-90% of families out there. I love being home with the kids more; I rarely have to raise my voice. We all feel happy when Ash comes home from school or Kevin comes home from work. That is how it should be, but I suspect it is rare for many other families out there. I don't just love my family- I<i> <u>like</u></i> them, too, and we enjoy each other. <br />
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Today has been a really good day at the hospital. I feel like we've gotten some answers. While Zach's ankles are still not great, and he has a bad spot in his back, he's doing pretty well overall. We were talking and thinking back to when one of the doctors here first looked him over at camp. He was a mess. He had huge red sores (plaque psoriasis) all over him. It was horrible. Enbrel has given him a chance at a normal life in multiple ways. Thankfully, 2 years down the line it is still helping him. We got him a prescription for physical therapy because I'm not sure how to help his pain when he is walking a lot or playing hard. I have some ideas, but I know that his issues are different from mine and what works for me may not for him. I'm hoping that will help him to gain some endurance, too. Otherwise he is doing very well!<br />
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We established that Emily's Pulminary Function Test came back with no problems, so that is great. I thought it would be okay, but one can never be sure. I spoke to the doctor at length about how her pain levels don't seem to jive. She still hurts a LOT, and it keeps her from wanting to do much of anything. We agree that some of it is her age with the hormones starting, some of it is muscle memory, and the adrenal insufficiency isn't helping. We also discussed the growth problems and how growth hormone may be the key to calming her pain down. To put this into perspective, I am 4', 9.5" tall. I have been this height since I was 10. Emily will be 12 on December 6. She is 4', 1.5" tall. I don't want her to be doomed to shortness, but I also believe that those cells not regenerating are storing pain in the nerve endings. If her joints are good, and her muscle strength is good, then it makes sense. Some of it is that she needs to stretch more. We have discussed this often; I know that she is trying, but I think we need to switch it up a bit. Her knees were bright red for months. Today they actually looked good, but they still hurt. I've been telling her that I think her IT bands are tight. They just need to be stretched and she'll feel better. It's so hard to get her to want to move. In any case, I will take this to our previous appointments. I think that the hydrocortisone is helping quite a bit, so hopefully she will start to feel even better from that soon. It's a slippery slope but I have hope that soon this will all be easier for her. <br />
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One good thing is that this doctor really sees why we need endocrinology. It makes me feel less like a paranoid, over-reactive mom. I really try hard not to be like that. I try to approach things with as much distance as I can, and from a clinical approach. It can be hard, but I put a lot of thought into everything before we make decisions. Em & I talk about it, and then Kevin & I talk about it. <br />
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As far as I know, tomorrow should just be a fast release home, but we shall see. Sometimes things sneak up at the last second. I still have to give our doctors here a copy of her 24 hour urine test that nephrology ordered. It's all over the place. Almost every section is flagged. We see nephrology and pain management next week, and we are awaiting an appointment with endocrinology closer to home. The endo that we saw once is leaving the hospital, and since it was two-three hours away we wanted to find someone close. I will let y'all know how those appointments go. I am praying endo will see her very soon!!!<br />
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*Friday note: Dropping to 0.3mls of steroids!!! She has been consistently on steroids with no break since October 2010. Again, she started at 42mgs, which was about 7mls twice a day. UGH!!!!! She has come a long way, but finally there is an end in sight! WOOT!!! This is exciting!<br />
<br />Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-68401815439987757462013-10-23T12:30:00.000-04:002013-10-23T12:30:01.916-04:00Three years of JM and MCTDIt was September 2011 when we first realized that Emily was very, very sick. We had gone to her former rheumatologist who had kind of given her a diagnosis... without any solid evidence to prove it. After blowing us off and telling us to come back in three weeks, we begged a new rheumy to see her. It was October 13, 2011 when we got the definitive diagnosis. We didn't get home until late on October 19th. Six days of hospital time- upper GI, MRI, lots of labwork, EKG, PFT, daily steroids and anti-inflammatories, and a lot of sadness. <br />
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Since then, we have been through a lot. We had the whole Prednisone double-the-weight-in-two-months thing happen, which was horrible all around. It caused major depression for her, and ripped our hearts out as we watched her eyes swell shut. We have found out about her throat muscles not working due to dermatomyositis, and then later we found that the scleroderma features are causing the esophagus muscles to spread, leaving a gap between it and her stomach. We have found out about early changes labeled as mild interstital lung disease. I saw that at our pediatrician's while reading the newest note they had sent over. We've had low cortisol and adrenal insufficiency, which contributed to causing kidney stones. As yet we have not resolved any of the above, with the exception of the stones. At this point, her pain continues to increase, likely because her pain amplification has come back. Her medicines just keep increasing. Below is the list of meds and vitamins that she has to deal with daily. I print this every time we see any doctor. I print triple copies when we have a hospital stay. You never know what kind of a resident you are going to have! <br />
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Despite this, we still have hope. Hope that one day she will be in remission. Hope that there will be no more progression. Hope that her pain levels will come down, as they continue to be an 8-9 (on a pain scale that goes from 0-10). Hope that she won't need to use one of those electric carts whenever we have to go to a big store.<br />
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We had an issue the other night at a big box store. I usually try to avoid this place, but I promised my oldest daughter that we would upgrade her phone there because the AT&T stores no longer carried the one she wanted. We went in, all of us dressed in business clothes since we had just come from my honor society induction. We chose an electric cart to help Emily get through the store, and we set about on our way until a greeter stopped us to tell us that she wasn't allowed on the cart unless she sat on my lap. I pointed out that they were there for disabled people, and she was a disabled child. She said that children were not allowed to ride them regardless. I am not quick to anger (except maybe at work), but I was livid pretty quickly. I asked to speak to the store manager, or a manager on duty. I offered to go to the car and bring back our handicap permit, but Emily decided to show off her port scar and educate this woman. She claimed that it was company policy, but she did not call the manager for us. Instead, she told us that she would "let us go this time". Nice. I wrote on their Facebook page, and their corporate Facebook, who directed me to a feedback link. I know you can't see her illness, which makes this our job to educate. We have never had an experience like this before, and we hope to never have another. I ended my post with "my child has likely suffered more in the last three years than this greeter has her entire life". And it is so true.<br />
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All in all, we are managing. For me personally this year has been pretty amazing, but it really sucks to see my little one suffer. It just shouldn't have to be like this.<br />
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_________________________________________________________________________<br />
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<div class="MsoNormal">
Conditions: Mixed
Connective Tissue Disease, Dermatomyositis, Juvenile Arthritis, Raynaud’s
Phenomenon, Scleroderma, Vasculitis Rashes, Esophageal Dismotility<o:p></o:p></div>
<div class="MsoNormal">
Current meds- last updated October, 2013<o:p></o:p></div>
<div class="MsoNormal">
*<b>Prednisolone</b>- (15mgs
per 5ml) Take 0.5 mls in the morning <o:p></o:p></div>
<div class="MsoNormal">
<b>Hydocortisone 5MGs</b>-
Take one tablet twice a day<o:p></o:p></div>
<div class="MsoNormal">
<b>Prilosec</b>
(Omeprazole) 40mgs One capsule daily.<o:p></o:p></div>
<div class="MsoNormal">
Procardia ER 30MG (<b>Nifedipine</b>)-
One pill once NIGHTLY. (For Raynaud’s)<o:p></o:p></div>
<div class="MsoNormal">
<b>Mycophenolate</b>
250MG (generic CellCept) 3 pills A.M. (750mgs), 250mgs P.M.<o:p></o:p></div>
<div class="MsoNormal">
<b>CVS Iron </b> 65mg- 1 pill once daily<o:p></o:p></div>
<div class="MsoNormal">
<b>Zyrtec</b>- 10mgs
nightly<o:p></o:p></div>
<div class="MsoNormal">
<b>Amitriptyline HCL 20MGs-
</b>Take one tablet nightly at bedtime.<o:p></o:p></div>
<div class="MsoNormal">
<b>Symbacort</b> 160/4.5- Two puffs twice daily (as needed- through winter and sickness) <o:p></o:p></div>
<div class="MsoNormal">
<b>Sucralfate 1GM- </b>Take
one <b><i>half</i></b>
tablet twice a day <o:p></o:p></div>
<div class="MsoNormal">
<b>Xanax</b> .25 mg-
Take 1 half of a tablet <u>as needed</u> for anxiety<o:p></o:p></div>
<div class="MsoNormal">
Lidoderm 5% patch- apply as needed 12 hours on, 12 off ******** NEW*********<o:p></o:p></div>
<div class="MsoNormal">
Multi-Vitamin & 2500 <b>Citracal</b> 400mgs calcium with Vitamin D 500 IUs– once daily<o:p></o:p></div>
<div class="MsoNormal">
Vitamin D- 1000 IUS, 2 fiber gummies per day<o:p></o:p></div>
<div class="MsoNormal">
***IV Infusions:***
<o:p></o:p></div>
<div class="MsoNormal">
<b>Remicade </b>325mgs
monthly<o:p></o:p></div>
<div class="MsoNormal">
<b>Rituxan</b> 400mg-
Every 3 months<o:p></o:p></div>
<br />
<div class="MsoNormal">
<b>IViG Gamunex</b> 10%
(15 grams)<o:p></o:p></div>
Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-45795464338922973192013-10-03T17:14:00.001-04:002013-10-03T17:14:24.909-04:00Would YOU like to win a book?My wonderful friend Kim has written a parents guide to dealing with JA. There is a contest happening RIGHT NOW that can help you to win a copy! The contest ends November 1st. Just go here: <a href="http://www.goodreads.com/giveaway/show/67666-living-with-juvenile-arthritis-a-parent-s-guide?utm_medium=email&utm_source=giveaway_approved" target="_blank">http://www.goodreads.com/giveaway/show/67666-living-with-juvenile-arthritis-a-parent-s-guide?utm_medium=email&utm_source=giveaway_approved</a> <br />
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I promise I will update soon. I have just been swamped with school work, and honestly we are still in that "I don't have a clue what is happening with this disease" chapter. I guess it's the hormones trying to work in her that are making things go crazy. I have no clue. I will be back when I have some idea of what is happening. As it stands, she hurts pretty badly every day. That hasn't changed at all. Her head, her joints, and sometimes her muscles. It's been a really tough year. This too shall pass............Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-83430848783062801372013-08-28T12:30:00.000-04:002013-08-28T12:30:02.204-04:00Last kidney procedure!I am so excited to report that the stent is now out of the ureter! As a quick recap for those who have missed it, Emily had kidney stones embedded in her kidney as a result of the steroids over the past three years. Because they were large, they realized that they were not coming out on their own, so they opted for surgery. She had one surgery to place the stent to allow the ureter to open enough to be able to see the stones, one procedure where they lasered the stones apart but left the stent to allow drainage, and one last one today to remove the stent. <br />
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I am usually the mom that loves everyone and has a hard time finding fault with the people and situations that pop up in the hospital. I wasn't even really angry when we had to change rooms two weeks ago at midnight- after I had already fallen asleep. Today I was livid.<br />
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We have two hospital choices when it comes to the urologist. One is a big hospital with a children's hospital attached, and one is a hospital that is only for children. One would think that the primary children's hospital would be... child friendly, right? No. This would be the same hospital that never checked vitals when we were there for her staph infection that was inside of her port. We usually won't go there, but in this case I had to make the decision in the middle of Kohl's with my calendar being my phone. I just thought this would have the stent out two days earlier, and it couldn't be that bad, right? <sigh></sigh><br />
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I knew we were in trouble when we got there and Emily pointed out that we all forgot to numb her port area with lidocaine (Emla) cream. We discussed it with a nurse who was more worried about getting Emily to pee. One would think we would work on the Emla first since it needs time to sit, but nope. She gave her a gown 12 sizes too big and demanded a urine sample- without the little cleaning cloths. Em was like, "but this won't be a clean catch!" They put her chair at the opposite end of the hall, and kept knocking to see if she had peed yet. We finally gave up and went back to the room. This time there were 3 nurses in the room, none of which had Emla. I finally texted Daddy to run out to the van. Oh yeah, did I mention that only 2 people were allowed back there with her? At our other hospital there was much less room but we could all go back together. Here they said that we could bring them back in "a little while". She also gave me the wrong room number so I almost didn't find them again. She said 9. They were in 10 with the curtain closed. Whatever. One of the three nurses never mumbled a word until it came time to attempt to access the port. It took two of them, one asking the other to grab supplies, but neither seemed to know what they were doing. In the end they hurt Em a bit, and then used a seriously oversized bandage on it. <br />
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I could be cool with all of that. Mostly. My final problems were that they finally allowed Dad & Zach back after two and a half hours back there, only to have them hang out for only five minutes. The worst part was that they didn't give her anything to help her calm down before leaving the room. In fact, they didn't even give us the, "last call for hugs" warning. It was just bars up, say goodbye. They said we could have a moment in the hall, but they kept the bars up. She cried all the way down the hall. You would think they would have handled that a little better, especially knowing that she is medically complicated. I was so upset about that. We all decided at that point that we were never going back there.<br />
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There were a few bright spots. The anesthesiologist was very sweet and he took his time, asking excellent questions. He even pulled a tooth while he was in there! :) <br />
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The other bright spot was our nurse practitioner. She has RA, and she used to see our first rheumatologist, now known to us simply as, "He Who Shall Not Be Named". She made a Freudian slip when discussing him that had me cracking up! He tried to screw her over, too. It was great to have someone who understood- if only for a few minutes. Overall though, we will never go back there. I don't care how new or beautiful an establishment is, or how good the view. If the quality of care is lacking, it just ain't worth it.<br />
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<br />Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-87048585265851547222013-08-01T17:04:00.001-04:002013-08-01T23:28:46.207-04:00Endocrinology & stuff<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
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This has been the quietest week, mostly because we scheduled it for recuperation. Emily can feel the stent in her ureter and it hurts, but I don't think it is horrible. I keep telling myself that it will be out in another week, & hopefully she will feel much better. She has been refusing pain meds, so that is a plus. Prayers would be wonderful, specifically for the ureter to be opened enough to grab all of the stones out of her kidney this time, no reaction to anesthesia, & of course to guide the surgeon's hands. </div>
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Biofeedback is seriously one of the best things that we have ever done for her. I think that every child with chronic pain needs to try it. Not only is she learning techniques to help her to deflate the pain but she is also learning how to take control over it. I really wish we had done this when she was five and limping everywhere, when the anxieties were so high that she seemed to be obsessive-compulsive. This would have been so life-changing then. I will have to tell our pediatricians that. And like all of that isn't cool enough, she is giving us some common-sense nutritional advice that I would not have thought of. Instead of keeping our fruits in the produce keeper, I am now washing them & placing them in a bowl on a low shelf so that everyone can see them. As Ginny says, people are more likely to eat what is already prepared. So true!</div>
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Aquatic therapy is still a challenge for her, but last time she got through it with the help of Xanax. We try hard not to use them, but when they are needed I am happy to give her a half of one. That is the only way she did well last week. She told us at biofeedback that she is afraid that the kids in the pool will laugh at her, & the old people will pinch her cheeks. We found a time with no kids & few older people. I know she will love it once she chills out a bit. </div>
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The big news of the day is endocrinology. You may recall that she was seen last month. The doctor, who was absolutely one of the sweetest people I have met, ordered a bunch of lab work to be done. We had it drawn when she went in for kidney procedure #1. She already received 6 of the 8 ordered tests. So far most of it looks great. However, she also asked for copies of her growth chart from our pediatrician. I don't think I ever realized but Emily has always been in the 2nd percentile for growth. Yes- second, and she really hasn't grown this year. Granted, I am NOT the queen of height (4' 9.5" myself!) but I think even I was taller back when I was her age. I worry about several things: A) the theory that the body holds in more pain when the cells aren't regenerating as quickly, causing her to feel amplified pain, and B) I worry about her jaw. One of the things that I have always noticed about adults who had JA as kids, and especially those that were on prednisone for long periods is that their jaws never seem to finish growing. It's like the jaw only grows to a certain point even if the rest of the body isn't finished growing. I didn't want her to be the kid with the tiny jaw. Imagine the implications of that- not having enough room for your teeth to fit (already a reality here), the need for more medical procedures to correct it. As it stands she only has a few more good years of growing. Her bone age is delayed, but not by a tremendous amount. It may be possible to catch up now- if we hurry. </div>
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The doctor (her name sounds like Tab-ew-wad-a) said that she feels that Emily would benefit from growth hormone. She asked me to talk it over with Emily. I took that as "give her a choice". So, we discussed it last night. Her shots will be every day but she is okay with that. She wants to try it. I think she is getting irritated by people always thinking she is so much younger. When they know her age they express shock. That's probably not good. I really hope that this is the beginning of a new, happy road. We will be so thrilled if this works. All in all, things are looking up! Thank goodness because this has been one heck of a summer that we wouldn't care to repeat. Would anyone like to share their stories of aquatic therapy, biofeedback or growth hormones? Please let me know!<br />
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Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-67724481453482892912013-07-26T00:34:00.001-04:002013-07-26T00:35:29.235-04:00Stone UpdateShe had aquatic therapy twice this week so far. Monday's was not so great. She promised me that she would give it a chance, but she wouldn't cooperate at all. On Wednesday it went well! I cannot say for sure that she enjoyed it, but she at least cooperated. She looked like she was having fun. Part of the reason that she did so well, I think, was Tuesday's Biofeedback session. What a wonderful tool! Again she was hooked up to the little EKG probes, and again we could see her tension visibly on screen. The cool part about that was that when she was upset about something we could see it shoot up to like 18, but once she started deep breathing and listening to her relaxation exercise it dropped down to about a 4. As Ginny pointed out, "see, Emily? You have the power to relax yourself. You don't need anyone else to do it for you". How cool is that? We discussed aquatic therapy quite a bit that day. I was very pleased that she did so well the next day.<br />
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Yesterday was the kidney stone procedure. <b> Of course, it wouldn't be our bumpy road if <i>anything</i> worked as intended!</b> The doctor called me on Tuesday as we were walking into a hospital for Emily's biofeedback to tell me that we may not proceed with the lithotripsy (shockwave of the stones). I really had no clue what was planned, but we are pretty used to this type of thing. Things always work out for the best whether we stress or not, so I chose not to stress. He called me the next day to say that they had a new plan, but it would likely mean two different procedures. He had initially said that the lithotripsy would require two procedures also, so it wasn't much different to me in that respect. He told us that he conferred with specialists all over the world to determine the best course of action for our special girl. <br />
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They put a stent inside of her urine tube to try to make it bigger. He told me that it was likely they would not be able to get the ureter opened up enough to grab the stones today. Sure enough, he was right. He said that she would have to have the stent in place for 1-2 weeks. It should dilate the tube enough to pull them out later. Right now she hurts but not too badly. They gave her pain medicine, an antibiotic, a medicine to help with bladder spasm, and another med that I cannot recall right now. The first few hours were awful! She felt so terrible, and she was in so much pain. Right now she seems to be her normal self. It's probably somewhat the pain meds, but it is reassuring.<br />
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The only beautiful thing about this is that aside from my working this weekend, we have no appointments planned until 2 weeks from now. It really just depends on when we go back for the second procedure now. Thank you so much for your prayers and love. We felt it, it helped me to be calm and collected. Emily was still a bit of a mess, but still much better than most kids would likely be. Thank you for your support. It is very appreciated!!!<br />
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The next post will be a how-not-to-die-at-the-hospital type of post, I think. I have spent a lot of time comparing how I was ten years ago to now. I have learned so much, become so organized which is really weird for me. I feel like I need to share it. That is coming! Stay tuned!<br />
<br />Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-45440748988428470352013-07-19T12:30:00.000-04:002013-07-19T12:30:01.191-04:00Balancing ActThis past summer has been our biggest trial to date. It has been a series of errors, really. It started with my thinking that Remicade wasn't helping as much last summer. Switching her seemed like the right idea at the time because I always had to base my decisions off of actions before that. She is a child that doesn't like change, so I expected resistance. I wasn't really expecting Emily to not respond to the next two medications. Just like I didn't think that taking a break from physical therapy would be too bad. Well..... I guess this goes to show that Mom isn't <i>always</i> right.<br />
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As some of you may know, I have always known what is wrong with my children. I know sometimes before they are fully sick that they are sick and with what. I pretty much understood everything that was happening to Emily, and I was able to anticipate things. Sometimes I could even tell you exactly what hurt. And then this year came along and that all flew out the window. I know that there are several things at play here- for one thing, puberty is rearing its ugly head slowly. That alone can change all of the games. I think that some of it is because of the kidney stones, and some from pain amplification. I think the pain amplification started because of the therapy break and the med changes. But I think we are on the right path.<br />
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This summer has been insane with appointments, but this week alone has been very trying. We had our hospital medicine overnight appointment on Monday and Tuesday. No really new changes, though we did have the worst nurse EVER. I always pretty much love everybody and tend to overlook a lot, but this lady literally asked my 11 yr old to walk her through how to de-access her port. At first I thought she was kidding. I was in the middle of saying, "So, if you don't know how to do this why don't you leave it for someone that does?" when she got it out. I almost died. It was horrible. We made it home safely at least. <br />
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Wednesday brought us to another out of town hospital for Endocrinology and Nephrology. We started out so early, but our GPS totally messed us up. We got there 30 minutes late, but they still saw her. I did call to let them know we would be late. I pre-paid for tolls expecting more than last time because we planned on taking the full toll road, but the stupid GPS never even put us close to a toll road. At all. That was stressful. A 2 hour drive turned into 3.5. Endo is ordering growth charts from her other doctors. She did a bone age scan. Em's hand looks about right for an 8-9 year old. She wants us to do a plethora of blood work. We are waiting until she has to be accessed next for it as it causes her so much anxiety. Hey, maybe when she has her kidney stones blasted out! We shall see. She said that there is a growth problem marked by either a missing or a mutated X chromosome. It mostly affects girls, and it can cause problems like arthritis, so she ordered the chromosome test. I was worried a little about Zach, too because his feet bother him so much. Since he has PsA, I dig through those medical papers a lot also. I asked her about <a href="http://www.mdlinx.com/internal-medicine/newsl-article.cfm/4684194/ZZAC8BBC6D64484DC7BB2F43CE719DC94F/?news_id=1604&newsdt=071613&subspec_id=1009&utm_source=Newsletter&utm_medium=DailyNL&utm_content=Top-New-Article&utm_campaign=Article-Section" target="_blank">this article. </a> She was very surprised that it discussed type 2 and not type 1, but either way she didn't think that we had to worry about Zach even with the family prevalence.<br />
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Nephrology discussed with us how to avoid kidney stones in the future. In truth, it may be difficult to avoid because they were likely caused by her Prednisone, but drinking more water and eating less salt will be helpful. She drinks water, she almost always has a bottle with her, but she doesn't drink enough. They aren't usually allowed soda, either. She just doesn't drink enough period. And she craves salt. She craves popcorn, potato chips, Ramen noodles. I hadn't realized it before but the little packets of flavoring that come with those noodles is 33% sodium. OUCH! Anyway, about 8 weeks after her second procedure he wants to do a 24 hour urine collection, and then see her back. He also wants us to collect pieces of stone for him to examine.<br />
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Before we saw Nephrology I stopped by to pick up copies of the CT scan and report. Of course I come home and research it all. Her stones are HUGE. One is 5X5 mms and one is 8X10 mms. WOW!!! That is crazy. There is no way they would pass on their own. I also read on the report that she has "gaseous distention of the colon" and a few other things that looked scary. It all seems to point back to 2 things- her esophagus is still not meeting at her stomach properly, which causes GI problems, and her stomach muscles are still weak, which are causing bathroom issues. I think once we get those stones out and strengthen those muscles she will feel a lot better. Her first procedure is scheduled for next Thursday, the 25th. <br />
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Thursday was her first appointment at a place that offers aquatic therapy. For a normal child this would be happy news. For a girl with high anxieties this was like walking the plank. She was NOT happy, so she kind of took it out on the poor therapist. She tried every trick to engage her, but Em wasn't having it. She was so worried about being in the pool that she couldn't see the happy side. Today was just an evaluation, but we start regular sessions on Monday.<br />
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We also started Biofeedback Thursday. We met Ginny, probably one of the coolest ladies that I have met this year. She was really chillin', but she also really <i>listened</i> to us. She asked Emily a lot of questions, and they talked honestly. It was lovely. They talked about sleep. Emily said that she reads to go to sleep every night because she hurts so much once she lays down to fall asleep. Reading takes her mind off of the pain. Also, she said the pain wakes her. (Sigh). At least now I know. We have been asking her about that forever. Ginny will be able to teach her techniques that she can use to fall asleep, to help herself relax, to help manage her pain. How cool, right? But it gets better. She placed electrodes on Em's main tension points around the head, jaw, neck and shoulders, and checked to see how stressed she was. She said that a normal person without chronic pain will be about a 2 on everything. Em had almost all of them 6+. She had one 13.5. I forget what her jaw was but it was really high. This is likely the cause of her migraines, headaches and jaw pain. So, we made our next 6 appointments with her. The week after our last appointment with her we will finally be seeing a good psychologist. Since the one that we interviewed for her seemed more overwhelmed by her situation than we are, we thought we would try <i>again</i> to make an appointment with the one who only handles kids with chronic pain. Between these 2 people, if she is still having headaches, Ginny recommended a headache specialist! I am hoping the Biofeedback will kind of heal that, but one day at a time. It will give her great coping tools that she can use for the rest of her life. And she told me that our pediatrician that recommended her called her yesterday to see if we had been to see her yet. So sweet! I will text our pedi tomorrow to let her know. We have some of the best doctors!<br />
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All in all, it was a very stressful week but also a very good one. I feel like we are on the right path, like we have the right tools in place. In a stressful time a couple of weeks ago I was trying to figure out how I would juggle all of this. I figured that if I did aquatic therapy after my classes are out on Mondays and Wednesdays and perhaps any Friday that we were in town then we could do biofeedback and psychiatry on Tuesday's, and our out of town appointments on Thursday's. So far that is working out brilliantly! I didn't actually expect it to work because it is a lot to ask of other's but the pieces are just falling into place (praise The Lord!!!) Hopefully this will help a lot.Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-68141135223423979802013-07-03T12:30:00.000-04:002013-07-03T12:34:18.381-04:00Anyone have a cheap helicopter for sale?Looking back on the past few years, I have NO idea how I worked full-time. This year has been so hectic, and we have added so many new specialists. The past few months have been extremely difficult and overwhelming.<br />
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Zachary is doing better than Emily still, but we have noticed... things. For instance, now that I have "kicked the kids out of the house" (to play), he complains more about pain from behind his knees. His rheumies hadn't mentioned anything before about enthesitis-related, but with Psoriatic Arthritis it does make sense. His ankle pain comes and goes, but lately it is more knees than anything. Last month when he saw our rheumies, we were talking about a friend of his who has had a lot more disease activity. I pointed out that Zach's case is relatively mild, but the response that I got back was, "PsA is a lot harder to treat 10-15 years out. PsA kids tend to be the hardest to treat and control down the road". Great. My heart sank. Fortunately, we live day-by-day! I am not going to get caught in that trap, and I won't let the kids get caught, either. I'm just happy that he is outside playing. Emily has been playing outside too, though she doesn't last as long. I am sure that she has been depressed, but hopefully the plan we have will address that and correct it quickly.<br />
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I have always been the mom that knows what is happening. It has been very rare that I was wrong- but the past few months I have felt so out of the loop, like I'm part of a guessing game. I think we are on the verge of getting that situated, but still it has been hard on me. Being this hard on me, I can't imagine how my little people cope. We did switch back to Remicade, which definitely seems to be helping. She has gone from having mostly 7-9 on the pain scale days to 4-5.<br />
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I think I am finally figuring out Emily again. Ok, this is a lot. So, she does have kidney stones, which we feel are definitely making life more difficult. However, what makes everything tougher is that she has "Pain Amplification Syndrome". I have mentioned before that it was brought to our attention that when one isn't growing properly, their cells aren't reproducing the way they should, which makes the body hold pain in. After a friend mentioned it, I started suggesting it to different doctors. They all agree. That said, we see endocrinology on July 17th. I am truly pinning all of my hopes here. As KM said, in their case once growth hormone was added, the first month was horrible but after that everything settled down. Pain came down, growth started; the best part is that the hormone is a natural hormone, and for them it helped them to decrease some and eliminate other medicines. I would LOVE that! I am quite sure Emily would, too. I am also hoping that this will help her headaches. Neuro-opthamology didn't see any reasons for her headaches, which I now think may be a combination of hormones (pre-pubescent) and the pain amplification. We are scheduled to see nephrology the same day we see endo. The very next week Em has her first psychology appointment, and the day after that she has a procedure to blast her kidney stones out by sonic waves. They will sedate her because a tube needs to be inserted up into her kidney. They tell me they will repeat this procedure on another day because sometimes they stones are stubborn and either won't break up or will break up but won't leave the kidney. We really hope that having these little nasties gone will help her pain level go down a bit. <br />
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Another new specialist that we have added is pain management. That doctor wants her to try aquatic therapy three times a week, as well as biofeedback. She says that these will both help the amplified pain syndrome. I'm just not sure how to fit these in. We have found the aquatic therapy close by, but I still haven't spoken to a provider for biofeedback. Right now it looks as though it may be an hour south for BF, close to urology. Comparatively speaking that is not bad. Rheumatology, who handles pulminology and GI are all two & a half hours north. Pain management, endocrinology and nephrology are all 2.5 hours east. With all of these appointments, school work for the kids, and my own schooling come fall, how the heck am I going to swing aquatic therapy three times a week? I'm not sure, but I know that we will. If it will really help her, we will do it. <br />
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The pain management doctor prescribed pain patches for her. Just lidocaine, but it seemed to help her knees a bit. I love that she chose something that didn't require another pill. I am not familiar with biofeedback, but from what I understand, it involves teaching the child how to cope and deal with their situation using relaxation techniques and monitoring bodily signals like blood pressure and pulse oxygen. It sounds really cool! Our advocate has suggested waiting to see what psychology said. Our psychologist was thrilled that we found a doctor who believes in hypnosis and biofeedback. I think psychology is a little overwhelmed by our situation. We had a good laugh over that tonight. She was pretty amazed at what we are dealing with. Like I told her, one day at a time and we stay close. None of us could do it alone. We need to take this all on as a family. It would just be easier if we had a helicopter. Or two. Or a fleet. <br />
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Last thing- Camp starts Saturday for Emily! She is SOOOOO excited!!! In truth, for the first time I am glad for her to go to get her out of here, to get a break. She is so sweet and wonderful, but it seems like every day we are at some appointment. That will be one week where we are guaranteed not to have to go to an appointment for her. The down side is that we had stopped Mobic (an NSAID) a couple of weeks ago because it was starting to hurt her stomach. Since we were stopping Mobic we decided we would drop Carafate (similar to Xantac, it coats the stomach). Today we ended up back at the pediatrician's office, thinking that her antibiotic wasn't working for her sinusitis. It turns out that her sinusitis is gone, but her reflux is acting up again. The Carafate is such a large pill. I cut it in half for her but it is still so big. She really hates taking it, and we were so excited to drop basically three pills a day. Now it's back on the Carafate. I'm not sure how she handles it, but she is pretty amazing. I am trying to get us on a wheat-free, gluten-free (or very reduced) diet. It is very difficult when you have children who are as picky and stubborn as Emily. She literally won't eat if we don't give her one of her staple foods, but we are learning how to find healthier options. For instance, I could buy all kinds of fresh fruit but it will sit in my fridge and rot. I discovered an organic fruit pouch (no GMO!) that my kids have sucked down. It's actual fruit- not juice. If that is the only way I can get them to eat fruit, I will do it. Baby steps. <br />
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I will keep y'all updated as we determine new things. It has just been tough. Thank you for reading and supporting us. As always, prayers, blessings, whatever you have to offer, we will always gladly accept and appreciate fully.<br />
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<br />Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com1tag:blogger.com,1999:blog-8028594537813006872.post-67427591007446450892013-05-19T12:30:00.000-04:002013-05-19T12:30:02.456-04:00Our latest craziness (written May 18)For anyone that follows my Facebook page, you already know that we have had a crazy week. It was actually more crazy than I even let on.<br />
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Our lives had basically been put on hold. We knew that Emily would end up at the hospital inpatient for a while, but we were not sure when. We had hoped to see a doctor, and that they would keep her, last Wednesday when we went for her meds. They didn't have a chance that day because they were very overbooked. The doctor running the clinic is only there once a week. Emily was devastated. It's a bad sign when your child actually<b> </b><i><b><u>wants</u></b> </i>to stay at the hospital. Especially when said child is the type that never complains. I spent the days following refusing to unpack, and not wanting to plan anything.<br />
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My oldest debated whether or not she had an ear infection. One day she would want to see a doctor, and the next she felt fine, only to feel badly again the next. My days were pretty booked up. I had finally gotten around to scheduling a well-check for myself. It had been 5 years!!! I didn't think it had been that long. While I was there they found a lump, which of course ended up with a mammogram for the next morning. I had school stuff to turn in, other paperwork to do, and now my own health concerns. I actually wasn't very concerned until I got there. They scanned, then they re-scanned. Then they performed an ultrasound. Thankfully, I have cysts but not cancerous. After I left that clinic that day, I ran to school, did a bunch of errands, and finally got home to find that Emily felt worse. We had already scheduled a pedi appointment, so we went there. We stumped the ARNP. She didn't know what to do, but she sent us for chest x-rays in case it was due to pneumonia going undetected. After doing the x-rays we went home. She had already been asking to sleep in our bed over several days before. One night I just pulled out the sleeper sofa. Hate that thing.<br />
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After we put the kids to bed Tuesday night, Emily decided it was time to go to the ER. Despite being mostly packed, it still took a while to get us out. To show you how much of a crazy house this can be, my son's ankle had started to hurt earlier in the day. He is over-exaggeratedly limping around the house. He tells Emily <u><b>as we are packing up to take her to the ER</b></u> that he is in the worst pain ever that she couldn't even imagine. Okay. We got to the ER around 2 AM. We wanted to go where her rheumy is because we felt sure that all of her problems were rheumatalogical. This time it was her joints, her muscles, and her chest/ breathing that was bothering her. They ordered an EKG, chest x-ray, and ultrasound of her liver, kidneys and bladder, and of course they did a urine test. Apparently she has kidney stones. They found traces of blood in her urine. We were unable to see nephrology over the next few days, but we were also told that the best nephrologist is at a different hospital. <sigh>. </sigh><br />
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Because it is what she wanted, I asked the ER if she could be admitted. They ran it by rheumatology. We have been going there since October of 2010, and we have never asked for anything out of the norm, which is likely why they agreed to it. Her labs look perfect. That's stupid. True, but stupid! I have spoken to a LOT of parents of patients, and patients as well that have said that many times when they are in a flare the labs look great. Usually the doctors don't understand that, but it is true. Because her labs looked so good her doctor thinks that her pain is caused by Pain Amplification Syndrome. Perhaps there is some truth to it, but I really, really think this is a flare- her first since we started going there. He sent in a physical therapist to do a CMAS (Childhood Myositis Assessment). I asked the PT about how her score was. She said "about 20 out of 50". Her neck muscles seem strong to me, but she can only keep her head & arms up for about ten seconds, and she was afraid to lay down because it hurt too much. I know the signs with her. The red spots had started to come back on her hands, two different types. She had the vasculitis "hot spots", and the smaller red dots that she gets with Dermatomyositis. Her elbows are pink again at the tips. Her knees are pink. This is a flare. Most importantly, not only did she have trouble holding a toothbrush and walking, she told me how badly her fatigue was affecting her. The fatigue was getting worse daily. I guess that we all disagree at some point, and I totally love and respect all of our rheumies, so we agreed to disagree. :) I know that he sees a lot of teens that have pain amplification. He seems to think that is where she is headed because of her age. I know her well, and I have (obviously) seen her go through everything. She has always taken it well. I have some theories. <br />
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She started to get the headaches when we started CellCept. She adjusted after about 2 months, and the headaches went away. When we started Orencia, the headaches came back, but only for a while. When we switched to Actemra, not only did they come back but every infusion saw a pain increase with the headaches. While one would likely assume when reading Actemra's side effects that headaches would be isolated to around the date of infusion, what if that isn't what they mean? That could solve that. We discussed going back to Remicade. Emily is thrilled. This is my bad: judging by the way she was acting towards the end of Remicade, I felt it wasn't working as well. I saw her in the bath constantly, something she usually did only when she was hurting. She is resistant to change on almost everything. I thought she didn't want to change because she didn't want to try something new. Apparently it really worked. <sigh> He has warned me that it may not work as well the second time around, but we had nothing to lose by trying.</sigh><br />
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She said that she felt better almost right away after starting the Remicade. It is likely more because she had three days of IV steroids, combined with Toradol (a strong NSAID) around the clock the three days, but regardless her pain has gone from a 9 down to a 4 today at home all day. <br />
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So, right there we need to find a nephrologist, hopefully the one he wants us to see. He wants her to see pain management because of her age and how they usually deal with pain badly. He wants her to see a psychologist, because she always seems so sweet and even, and she has <u><i>never</i></u> gotten nasty, mean, angry, or moody. And I mentioned endocrinologist. <br />
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Thanks (again!) to KM for bringing this up. Her son had many similar problems, from lack of growth due to steroids, "something" showing on the MRI, and possible amplified pain. She explained that (and I apologize if I don't get this 100% right) when the body is not growing right, the cells do not multiply as quickly as they should. Those cells help the body to heal, thereby reducing pain. IE: if one is not growing, not only is their body out of whack but their pain can be greater because it does not have what it needs to heal. I explained this, and the fact that it allowed her son to get off of a considerable amount of medicines! If we have to add something natural to get off of something(s) unnatural, it is well worth trying. So we are looking for 4 new doctors. Apparently pediatric endocrinologists are hard to find also, or we would have seen one while we were inpatient. At least I feel like we are back on the right road, and we will hopefully be back up soon. One thing that was beautiful was having so many people check up on us while we were inpatient via phone call, text or Facebook messages. Thank you all for your love & support!<br />
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One last note- I had gotten the camp email saying that she was placed on a waiting list because she had already been to summer camp several times. She was devastated at first, but she decided that since they could call at any time, she may have a chance. The following week I received a call from camp. Due to the severity of her disease they thought that she needed to go anyway! I tell you, that was exactly what she needed. She needed something wonderful to look forward to. Thank you, <a href="http://www.boggycreek.org/" target="_blank">Camp Boggy Creek</a>!!! They really helped her when she needed it most. I was sobbing on the phone. LOL! Thank God!!!<br />
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*I apologize in advance for anything that doesn't make sense. I worked a long day, and it is now past my bedtime, not to mention it is a LOT to process. Back to work in the morning! Have a fantastic day! :)<br />
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<br />Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-43595047710739533262013-04-01T12:00:00.000-04:002013-04-01T12:00:06.231-04:00Prayers needed (long)Right now, every time that I sit down to write, something else comes up that makes me think that I should wait for an answer. However, since writing helps me to think, I am better off just writing.<br />
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Last Friday we went for the requested MRI's to figure out why Emily's head has been hurting so much, for a month or two without relief. While she seemed so prepared, once we were in the room with the machines, the tech mentioned that he would have to poke her for contrast. This started an uncontrollable wave of crying that lasted about a half an hour. It made him very nervous. She finally calmed down enough to try the jaw MRI. When the time came for the tech to try the contrast, he couldn't get a vein. Two tries and she was so upset that he did not push. It was draining and terrible. In the end, he showed us clips of her brain. I thought that was really cool & sweet of him. He didn't have to.<br />
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We went to the hospital on Monday. I was hoping that we would have an opportunity to really sit down with the doctor and talk for quite a while. What I didn't count on was spring break. While there are usually 3 doctors, two Advanced Registered Nurse Practitioners and an RN, this week there was only one doctor and her secretary. She barely had time to breathe, though she did order a Pulminary Function Test when I mentioned that Emily was having a hard time breathing and her chest hurt. I was planning on getting a plan for exactly how long it would take to wean off of Prednisone, but instead I just got a "we are working on it". Ok, I get that. Things happen, we may need to increase, etc. I may not like it, but I understand. It's hard to push when she still hurts in so many joints. I am not convinced that Actemra is right for her, but here is to hoping that it kicks in soon. I was hoping that we would have MRI results, but no such luck. She couldn't find them. We didn't officially get PFT results either, but I did receive a comparison with last time which tells me that everything there is ok for now. Oh, and we got a prescription for the *occasional use* of Xanax. This way she hopefully doesn't make another tech nervous. I didn't have nearly enough time with her, for the most part.<br />
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This time on our overnight, the pharmacist came by to go over meds; we never even saw a resident. I actually like it better that way. It's nice to cut out the middleman. For the first time we got a room that was not properly cleaned, but they brought up a dinner tray- something that we usually don't see- and it was what she wanted. Bonus!<br />
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When we got home I started preparing for the appointment with the oral surgeon. I had debated on whether or not to cancel this, but in the end I decided to keep it because if her headaches were caused by arthritis of the TMJ joints, we would need an oral surgeon. I had the panoramic from the dentist, the CT results that suggested the molar roots in the maxillary sinus cavity, and the paperwork. I arranged to also pick up copies of the MRI's from Radiology Associates. I was not prepared for the report.<br />
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They had done 2 MRI's- one of her jaw and sinuses, and one of her brain. The one of her jaw apparently was not that fantastic. She moved and they did not get good images. They did not even mention the sinuses. Of course they ask me some questions, as well as get a report from the doctor. We checked yes to headaches, tinnitus, dizziness, feeling off-balance. We discussed MCTD, Dermatomyositis and the intricacies of rheumatic diseases. I mentioned that vasculitis had been thrown around here and there, but it never went further than that. Then I get the report.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDw81mLYDnpOX4AzxvBP273cwAFKGdG-RDOH6kmri4TkFL463jNBo071jXLTi6YDK6qiZN5ux0WQ7QCu7QREcTpKioUT0DY4sMZQ1zLzzuj3MtRNE4sXrw_IrU3lJYiHg7qPOp3XWVqfA/s1600/Altered+Brain+MRI+March+2013012.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDw81mLYDnpOX4AzxvBP273cwAFKGdG-RDOH6kmri4TkFL463jNBo071jXLTi6YDK6qiZN5ux0WQ7QCu7QREcTpKioUT0DY4sMZQ1zLzzuj3MtRNE4sXrw_IrU3lJYiHg7qPOp3XWVqfA/s400/Altered+Brain+MRI+March+2013012.jpg" width="308" /></a></div>
Sometimes it is a beautiful thing to be blissfully ignorant. I have somewhat looked up vasculitis before, but since it was never (in my eyes) an official thing, I didn't worry about it, so it struck me at the bottom there- "history stated CNS vasculitis". Whose history? Presumably from the doctor's since I never said that. So, what else would I do? I google. And I find this: <i><b>"<span style="background-color: white; color: #363534; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 16px;"><a href="http://my.clevelandclinic.org/disorders/vasculitis/hic_central_nervous_system_vasculitis.aspx" target="_blank">If a blood vessel with vasculitis is small, the vessel may break and produce tiny areas of bleeding in the body. These areas will appear as small red or purple dots on the skin. If a larger vessel is inflamed, it may swell and produce a nodule (lump or mass of tissue), which may be felt if the blood vessel is close to the skin surface.</a>" </span></b></i><br />
<span style="font-family: Times, Times New Roman, serif;"><span style="line-height: 16px;">I had asked in the past what those red spots on her hands were, but I guess I just didn't really put two and two together. She also pointed out on Friday that she has a "nodule". I wasn't convinced that it was a nodule, but I guess it may be, or it may be vasculitis. Yes, this is why the MRI was supposed to have contrast. So, that floored me, but only later. What <i><u>really</u> </i>got me was the Chiari I Malformation.</span></span><br />
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<span style="font-family: Times, Times New Roman, serif;"><span style="line-height: 16px;">I had heard of this before, so it wasn't a completely foreign term. I had even studied it briefly at one point, just because it sounded interesting, and a Facebook friend had one. I'm pretty sure my heart stopped when I read that, though. My first conscious thought was "it has to be from the damn steroids!" Apparently not. They say that it is genetic. Hmmm. Of course, I read. As soon as we got into the oral surgeon's office I <a href="http://www.mayoclinic.com/health/chiari-malformation/DS00839/DSECTION=symptoms" target="_blank">googled Chiari</a>, and was stunned to find that she really does have many of the symptoms. On my phone that was the best I could find very quickly, but she has many of those symptoms. It even explains her chest pain. I also read that it is usually diagnosed off of symptoms and an MRI, so my guess is that she will be diagnosed as soon as we get into a neurologist, though I want to speak to an endocrinologist to make sure that it isn't cysts affecting her growth. (Thanks again, KM!) In an effort to expedite things, I popped by her pediatrician's office and left a copy of that report. I am hoping that <i style="font-weight: bold;">somebody</i> should call me back no later than Tuesday. </span></span><br />
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<span style="font-family: Times, Times New Roman, serif;"><span style="line-height: 16px;">And the oral surgeon didn't have the greatest news, either. Pretty much, she does not technically have TMJ, but the muscles that support the joints are weak and sore, which is causing that pain, though it is also possible to have pain there from a Chiari I malformation. He said that given her history, this is likely an early warning sign of TMJ arthritis. He pointed out that her bottom jaw is not growing the way that it should; it is a little small, so when she is 16 they will likely yank a few teeth to make room for her molars and give her braces to help extend the jaw. Hopefully by that point she will have grown, and maybe her jaw will catch up by then. The roots are <b><i>NOT</i></b> in the maxillary sinuses- just close to. However, those are only her 2nd molars, and there is no room for them. </span></span><br />
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<span style="font-family: Times, Times New Roman, serif;"><span style="line-height: 16px;">So, yeah, pretty much in a nutshell, Friday sucked. The icing on the cake for me was finding out that they messed up when they did our taxes, and we are getting back $300 less than what we were told. Yeah, and that refund check will definitely not be here by this week. We should have had our refund by now, but this is how we roll.<span style="color: #363534;"> </span></span></span><br />
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There is so much to process, and figure out. Hopefully we can get the ball rolling this week. If she wasn't in pain daily, not able to concentrate, than I would maybe not worry about it. They say that most people that have a Chiari I malformation have no idea that it is there, but of course she does. It really makes me sad that everything happens to her. I now cling to the knowledge that she may go into remission on the MCTD front later on in adulthood. She really needs a break. Please pray for Emily that we get all of this taken care of without the need for surgery. Thank you.<br />
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<br />Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0tag:blogger.com,1999:blog-8028594537813006872.post-23094313947060912862013-03-22T12:00:00.000-04:002013-04-01T02:02:42.834-04:00Hoping for real answers on MondayIt seems like it has been a long time since I have posted. I don't know where my days go! <br />
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Overall, Zach is still doing pretty well. We have noticed that he simply cannot handle being on his feet for long before his heels and ankles begin to hurt. It isn't the end of the world, but it isn't fair to him when we go places, like <i>Lego Land</i> with our favorite arthritis families! It was so wonderful to see so many of our extended family members, as well as meet a few whom I have been typing to for years! It was tough on Zach, though. I never think to get him a wheelchair. We should have. Next time.<br />
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I'm not really certain where to start with Emily. The easiest part is Actemra. The first three doses seemed to give so much promise; they all bought her about eight mostly pain-free days. She has had five doses now, I think, but the last one only worked for about two days. We have spoken to our rheumy group about that, but for the moment they want to see if it will kick in. If it does not, I am not sure what our next step will be. She consistently hurts in her knees, hips, back, ankle, and shoulders. This is the worst that she has felt in quite some time. She is moving around less and less, because it is so difficult and her balance is off.<br />
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The other problem with her right now is the continuous headache. We have been on the runaround, which I am putting a halt to. I had mentioned it to our rheumy group the past month or two, but at the time it wasn't significant. More recently, she started pressing the issue more, so we have delved deeper. Our pediatrician had sent her for a CT of her sinuses. The CT came back that she was still congested, but also it claimed that her molar roots were spreading into her maxillary sinuses. Next step was the dentist. We had a panoramic done, which our dentist does not think looks as though the roots are an issue. He referred us to an oral surgeon. All of that is lovely and all, but I still did not have a reason, so we decided to see our pediatrician. She concluded that it is <i>likely</i> her TMJ joints in her jaw- the <i>only</i> joints that did not "seem" to be affected prior to this. <sigh> So, in desperation I called our rheumies. Because the scheduler's had messed up our appointment times this past month, we skipped seeing a doctor when we were there. (I should have bugged our rheumy at <i>Lego Land</i>, but even then I did not realize how much these headaches were affecting her!) I left a detailed voice mail on Friday afternoon which likely held a note of desperation. They called me back fairly early on Monday. Tomorrow we are going locally for two head MRI's. Hopefully one will be MRI and one will be MRA. The MRI's will be of her sinuses and TMJ joints, and the other will be of her brain to (hopefully) rule out vasculitis. These headaches have consistently been about a 4 for her for at least the past month. Nothing that we do here helps. Antibiotics had no effect. She can have 325mgs of Tylenol, but that's it since she is on Mobic. She needs the Mobic more for her joints right now. Tylenol does help her joints a bit, but not her head.</sigh><br />
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She also popped out here a bit ago to tell me that her chest is hurting again. We have established that it hurts when she breathes, so tomorrow we will dig out our nebulizer again. I will have to add that to the list of things that we discuss on Monday at the hospital. The wonderful thing about having the MRI locally is that we should have answers to our questions about her head on Monday- at least some! Hopefully they will be able to listen to her chest then, also. She is already on Symbicort and Singulair daily. I would like to add Spirulina, the natural blue/green algae. I have to make sure that it will not interact with her other meds.<br />
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Please keep us in your prayers, if you would. This has been a tough time. She doesn't want to do anything or go anywhere. I really feel that having our puppy is such a blessing to her. He has been so great lately, and he really helps to take her mind off of things, or at least he gives her something good to focus on. <br />
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One last thing: Zachary will be ten on Sunday! I am not sure where the time went, but he is so sweet, so smart, so funny and loving. I am so thrilled that he is my boy. <!--3-->Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com7tag:blogger.com,1999:blog-8028594537813006872.post-41663942084231721102013-02-22T12:00:00.000-05:002013-02-22T12:00:01.170-05:00Appointment for Zach, and test results for Em.We had an early morning today. On the happier side, we saw two hot air balloons on our way to the hospital! It was a really neat experience for the kids! By the time we got to the interstate, we had come fairly close to one of them, certainly closer than they had ever come before to one.<br />
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I'll start with Emily because our month has been difficult with her. She had gotten a sinus infection just before we went for her meds two weeks ago. We started her on antibiotics only a day or two before. I wasn't overly worried because she was receiving her IViG that week. Usually that would boost her immune system up enough to kick an infection. I was surprised to see that her IgG count (immune system) was up around 700- normal. Hmmm... I thought that surely with a good IgG and added IViG, she would be just fine pretty quickly. That was a Thursday and Friday hospital visit. We also finally had the hand MRI done during that stay, though only for one hand. <br />
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By Monday she felt worse. We went back to her pediatrician, who increased her Augmentin from 1.5 teaspoons to 2. She also insisted that we give Emily Xopenex in her breathing chamber every six hours. The very next day her pedi called me on my cell phone, from her cell phone, on her day off to make sure Em was doing ok. She informed me then that her breathing was so bad that she considered sending us to the ER, but opted instead to check up on us, and ask us to start using the nebulizer. I had lent that to my parents, so I borrowed it back from them. Em was seen that Wednesday. Her breathing sounded much better after 4 rounds of albuterol in the nebulizer. Phew! Not out of the woods yet, we were asked to bring her in on Friday for a CT scan of her sinuses. We couldn't get a Friday appointment, but we were able to have them done on Saturday morning. I am so glad that we did! By this Wednesday, since she still wasn't feeling any better, I called our rheumies, wondering what we should do about her infusion the next day? I also called our pediatrician and had them fax the CT results to our rheumies. I had six calls to and from the hospital, between the nurses from the infusion room, to the RN that helps keep the rheumies on the same page.<br />
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The end result for this was an infusion of IV antibiotics before her Actemra. The RN had at one point called me and said that her head was still so full that she didn't feel comfortable telling us to come in, but the doctor's ordering the antibiotic changed the game. She also said that apparently, the roots from Emily's molars are growing into the maxilliary sinuses. I found that to be rather interesting. She had a CT of her sinuses a few months ago, and nothing was said about that then. On my list of questions for next time I will have to ask if this is possibly a result of the stunted growth from her steroids. I am assuming that her face and jaw are not growing as well as they should be, so this would make sense. Thinking about the advice of a friend, I believe we will ask them to refer us to an endocrinologist. (Thanks, KPM!) I hope to have more answers on Monday when we go back to the hospital to see the ENT. I have no clue what the answer will be to the molars getting into her sinuses. As my husband said, that explains the pain that she has had in her jaw lately. On the bright side, she can now feel the Actemra working. She was wiped out, but she felt better last night.<br />
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The other thing with her is the MRI of her hands. I was extremely happy to see that there is no joint deterioration, but there is tenosynovitis. At least now we know why they hurt so badly so much of the time. We received her TENS unit this week. We will have to use this to help that. <br />
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Zach's appointment was much less complicated. The end result with him is, while there continues to be signs of progression, there is not enough cause to change medicines. I am happy with this. I really do not want to try Humira, mostly because of the burn. He is experiencing swelling in his right knee and left ankle, but not really any pain. Occasionally his knee will hurt, but his ankles are worse. He also has a spot in his back, but it doesn't bother him often. However, they are not bad enough yet, which is fine with me!!! His psoriasis isn't so bad either. He has a spot on both elbows, and his head is starting a bit, but I also held his meds this week because he has been sick, too. I am glad that one of them is stable. <br />
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The funny thing about having two sick kids is that, since Zach is so much more well than Emily, it is hard sometimes to remember that he is sick, too! It would be lovely if he would hit remission. We will never lose hope.Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com3tag:blogger.com,1999:blog-8028594537813006872.post-59303359398906438372013-01-28T12:00:00.000-05:002013-01-28T12:37:21.687-05:00Little updateOur little roller coaster is rollin' along. We went for Emily's first round of Actemra on Thursday. She says that she doesn't really feel a difference yet, but I think that she is moving better. We got our hopes up because I found an article that stated many kids can feel the Actemra working within a few hours. I thought for sure that Em would be one of those kids; usually if a medicine is going to work for her, she feels it almost immediately. I still have high hopes that this will work- it just isn't happening as quickly as I would like. Her hands and toes have been extremely bad, but her knees, hips, back and wrists have been kicking in as well. She has been back on Mobic every day. Hopefully when she goes back in two weeks, that round will help. Actemra is a bi-weekly infusion, which is a pain, but if it works....<br />
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Last time, they had ordered labs, then later in the evening they ordered more labs. I had seen the report from the first set, but I had not seen the report from the last set. Not only were her inflammation counts down, her muscle enzymes were low. For a child with Dermatomyositis that had muscle pain and active rash when those labs were drawn, a low Aldolase is weird. I'm not arguing, mind you. They took it twice that day. The first time it was 4.9; the second time is was 3.2. I still have things to research here, as soon as I can find some time. They ran another Scleroderma panel. Something like 62% of people with Scleroderma are negative for the antibody, so I'm not very surprised that she has so many symptoms but she's negative. Hopefully her MCTD won't turn into full-blown Scleroderma. We can deal much easier with just "features".<br />
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We were home on Friday when my son goes limping behind me in the kitchen. He was trying to slide by without me noticing, but it's hard not to notice him limping. His knee was swollen and sore. <sigh> It was feeling better by the next day, but still... His knees never bothered him before. I am hoping it was a fluke and not new joint involvement.</sigh><br />
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And yet, through all of this I think about how happy my family is together. I think about how we may be if it wasn't for crazy health problems. Would we be well if we hadn't had mold in the house? Would we get along at all if Kevin and 2/3 kids weren't sick? I am pretty sure that I wouldn't have had the confidence in myself to go back to school. I certainly wouldn't have the same motivation that I have. We wouldn't be homeschooling, which I think is really cool! And we probably wouldn't have a cute new furry member of our family. (Even though he is a bitey little puppy, he's very loved!) Yeah, Kevin and I have had a few rough years that I don't know how we got through, but overall I am so happy to see him come home every night. Who would have thought some 19 years after meeting him that I would still love him? Or even like him? :) Yup, he is my rock and an awesome father. I thank God for him and the kids every day, multiple times. I would be lost without those 4.<br />
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And of course there are always those that have it worse than us... no matter who you are or what you are going through. I have shared on my Facebook the story of a boy named Cameron. About a year and a half ago, Cameron began having seizures. They couldn't get them to stop, or figure out why he was having them. I believe it was 21 days before he was stabilized, but he was left having to relearn many, many things. There was some permanent brain damage. He went home and began the long recovery process. Just as he was about to "graduate" out of physical and occupational therapy, he was hit with another round. This past Christmas morning, he began to seize violently. This time, they had a much more difficult time figuring out how to stop his seizures. He was on quadruple the amounts of medicines than he should be, but what else could they do? They finally did stop the seizures. When they went to take him off of the ventilator, his lung collapsed. They discovered he had an infection, so he is on antibiotics and they re-intubated him. They are weaning him off of the ventilator. However, the doctors still have no idea why this has happened. He has now defied the odds twice, though he's not totally out of the woods this time. Please pray for this boy- that he recovers, that he retains his fighting spirit, that he does not give up. Please pray for strength for him as well as his family. He has a twin brother. Can you imagine being that brother??? I can't. Please pray for him and their other siblings. I believe that boy is still alive because of the awesome power of prayer.Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com1tag:blogger.com,1999:blog-8028594537813006872.post-67009179986904807582013-01-12T12:00:00.000-05:002013-01-12T12:00:04.518-05:00Another new med coming our wayThis appointment went a little more like I expected last time would be. We have three different rheumatologists working out of our clinic. We have pretty consistently seen the one male doctor the for the past year, mostly because of the days that we have made our scheduling. We don't play favorites- I think that they are all fantastic. However, sometimes there are situations that I feel one really needs to see the doctor with the most experience for, or at least get a second set of eyes for. <br />
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This past six weeks Emily just went downhill. No, it wasn't nearly as bad as 2010 when she was too tired to roll over in bed and crawling to the bathroom, but it was the worst flare that she's had in a while as far as joints and muscles are concerned. I am just happy that we got her throat stuff under control before this flare hit. Every day for the past six weeks something new has hurt. The pain in her hands- most notably her thumbs- has been the most significant. One of our occupational therapists had ordered her new splints, and started wrapping her in <a href="http://www.kttape.com/" target="_blank">KT tape</a> to give her added support. She has still felt pain badly enough to want to rip off her thumbs and toes. Then her ankle, thighs, knee, shoulders, and wrists decided to kick in, with the occasional shout out from her hips. The month was miserable for her. <br />
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I had hoped that we would see the head doctor this time, but I didn't expect it because she has been doing a lot of research related work. I was so thrilled to see her come our way! I have missed her. :) She's just so sweet and caring. (They all are, really.) She agreed immediately that <a href="http://www.orencia.com/index.aspx" target="_blank">Orencia</a> isn't cutting it. We are going to give <a href="http://www.actemra.com/" target="_blank">Actemra </a>a try. I had expected this before we started Orencia, honestly. Actemra was first approved for the Still's Disease (SJIA) kids; recently it was proven effective and approved for poly JA kids. Since Emily is a mix of things, I am hoping that this works well. She should be set to start it in two weeks.<br />
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The hands are posing more than the usual concern. We had an MRI scheduled for her hands, but they said that it would be 1 A.M.- a day and a half after the order was sent to them. We stayed all day today waiting for it, but we just couldn't wait for them anymore. We're already changing meds so it won't affect treatment; they just wanted to see why they are such a mess. Our other doc says that her hands are much more scleroderma now than arthritis. <sigh> Not what I wanted to hear. It makes sense, I know. I would just be more comfortable thinking it was "just" arthritis. </sigh><br />
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One thing that I found interesting through this is that her labs look <i>awesome</i>. You would think that as much pain as she is in, as much stiffness as she has, as much as the rash is coming back out in her knees, elbows and around her eyes, her labs don't show it at all. I asked the doctor if it was just because we were two weeks later on the IViG this time than usual, and he said likely so. But one would think her labs would show it. No elevated inflammatory markers, no elevated muscle enzymes. Weird. Awesome, but weird. This is good to know for future reference. I know that many adult rheumies assume that if your labs don't show inflammation, you don't have any. <br />
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So, we go back in two weeks to try Actemra, and we hope that the MRI works out in the near future. And for now, I am going to pass out in my own bed. I have to be at work in a few hours. I'll keep ya'll posted!Amadayhttp://www.blogger.com/profile/07951303205524536934noreply@blogger.com0