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!
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!
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.
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!
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!
Showing posts with label Autoimmune diseases. Show all posts
Showing posts with label Autoimmune diseases. Show all posts
Monday, December 15, 2014
Sunday, May 19, 2013
Our 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.
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 wants 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.
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.
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 as we are packing up to take her to the ER 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..
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.
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. He has warned me that it may not work as well the second time around, but we had nothing to lose by trying.
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.
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 never gotten nasty, mean, angry, or moody. And I mentioned endocrinologist.
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!
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, Camp Boggy Creek!!! They really helped her when she needed it most. I was sobbing on the phone. LOL! Thank God!!!
*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! :)
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 wants 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.
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.
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 as we are packing up to take her to the ER 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.
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.
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.
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.
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 never gotten nasty, mean, angry, or moody. And I mentioned endocrinologist.
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!
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, Camp Boggy Creek!!! They really helped her when she needed it most. I was sobbing on the phone. LOL! Thank God!!!
*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! :)
Friday, March 22, 2013
Hoping for real answers on Monday
It seems like it has been a long time since I have posted. I don't know where my days go!
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 Lego Land 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.
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.
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 likely her TMJ joints in her jaw- the only joints that did not "seem" to be affected prior to this. 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 Lego Land, 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.
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.
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.
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.
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 Lego Land 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.
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.
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 likely her TMJ joints in her jaw- the only joints that did not "seem" to be affected prior to this.
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.
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.
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.
Thursday, May 3, 2012
World Autoimmune Arthritis Day is coming!
Are you looking for more information on forms of Autoimmune Arthritis? Are you wondering what the heck it is? Are you or a loved one affected? Well, if so, you have found this post at the right time! www.worldautoimmunearthritisday.org is hosting this FREE event for a total of 47 hours so that it will span across the world! It's coming your way on May 20! If you would like to register click here to head over to the registration page.
I'm changing my format a bit tonight. This post is intended to be a "take away" from this event. This is to go along with my presentation. I will be speaking about how to cope with having a child with autoimmune arthritis. I touch briefly on what juvenile autoimmune arthritis is, some things to watch out for, how to find a doctor... that type of thing.
There are some things that I have found important that I did not cover in my presentation, and one that I just can't stress enough. Having one autoimmune disease opens a person up to developing more. I was so blind at first with my daughter. I truly think that she had JA from a very, very young age, but we didn't figure out what it was until she was 5. It took months to get into a pediatric rheumatologist, and another year for her to start to feel good. Once she was on the right medicine combination she did so well that many days it was almost like she wasn't ill. I naively thought "my child will never flare. We're past that now." I have since learned through making friends with a few hundred parents of JA children that most kids don't outgrow this. I'm sure that there are some, but not many. Eventually medicines will stop working. You will be on a quest to find a new medicine. That is terribly frightening... making decisions that may alter your child's health. You look at the warnings and you are terrified. Such decisions have to be weighed carefully. Do I let him or her suffer and risk more severe damage or try something that may cause other problems?
Hopefully your child will be a "simple" case. Maybe a nice oligo (less than 4 joints) with no eye problems. However, JA can look like simple arthritis but actually just be the first signs of other diseases. In my case, my daughter has Mixed Connective Tissue Disease. It started with the arthritis but within about six months of treatment we noticed that she started turning blue. Yes- blue. The pictures below are actually a Raynaud's Phenomenon episode. The blood vessels overreact to the cold. True Raynaud's has a 3 phase color show. Blue as the hands start to get really cold, white as the blood stops flowing and red as the blood starts flowing again. Raynaud's can be its own disease but it is actually worse as a secondary. It is associated with MCTD, Lupus and Scleroderma. It takes almost nothing to trigger a flare. My daughter developed frostbite inside of the school cafeteria! That's when you start to make life-altering changes. She wasn't allowed to wear shorts or skirts, she had to keep jackets, mittens and hand warmers with her at all times and she had to wear 2 undershirts under her clothes until she was finally started on medicine for it.
We had a very hard time researching MCTD. It is basically overlap. There is a long list of symptoms that it can include, and every affected person has a slightly different case. What did we learn from this? With an autoimmune disease, crazy things can happen. Weird rashes can be a sign of an unrecognized disease. The blue hands can mean Raynaud's. Watch your child carefully, chart pain, stiffness, and any unusual symptoms. My favorite thing to do is take pictures! Yes, I have taken pictures of just about every strange occurance that we've had. Maybe your doctor won't see how big your child's knee can swell in person, but they have to appreciate the picture! And bring up anything that seems unusual to you. Sometimes it's the little things that don't make any sense that can change a diagnosis. For instance, pain in the heels or toes can be attributed to Spondyilitis.
They say that usually siblings don't get diagnosed but I personally believe that their figures are flawed. I am on several JA boards and between those and my couple hundred parents on my Facebook, we see many siblings becoming affected. I would try hard not to get paranoid but always be on the lookout for symptoms.
As for helpful hints, these are some things that we do.
-Talk to your child, and tell them as much as you can to help them to understand what is happening to them. Put yourself in their position. If you were 5, 10, 15 and just starting to go through something like arthritis, how scared would you be? They need to understand some of what is happening. Also, help them to know what medicines they are taking. If they are hospitalized and you are not in the room when they get their meds, they may be over or under medicated. (Yes, that has happened to us, but thankfully Emily knows what to take and she stopped it!)
There are some things that I have found important that I did not cover in my presentation, and one that I just can't stress enough. Having one autoimmune disease opens a person up to developing more. I was so blind at first with my daughter. I truly think that she had JA from a very, very young age, but we didn't figure out what it was until she was 5. It took months to get into a pediatric rheumatologist, and another year for her to start to feel good. Once she was on the right medicine combination she did so well that many days it was almost like she wasn't ill. I naively thought "my child will never flare. We're past that now." I have since learned through making friends with a few hundred parents of JA children that most kids don't outgrow this. I'm sure that there are some, but not many. Eventually medicines will stop working. You will be on a quest to find a new medicine. That is terribly frightening... making decisions that may alter your child's health. You look at the warnings and you are terrified. Such decisions have to be weighed carefully. Do I let him or her suffer and risk more severe damage or try something that may cause other problems?
Hopefully your child will be a "simple" case. Maybe a nice oligo (less than 4 joints) with no eye problems. However, JA can look like simple arthritis but actually just be the first signs of other diseases. In my case, my daughter has Mixed Connective Tissue Disease. It started with the arthritis but within about six months of treatment we noticed that she started turning blue. Yes- blue. The pictures below are actually a Raynaud's Phenomenon episode. The blood vessels overreact to the cold. True Raynaud's has a 3 phase color show. Blue as the hands start to get really cold, white as the blood stops flowing and red as the blood starts flowing again. Raynaud's can be its own disease but it is actually worse as a secondary. It is associated with MCTD, Lupus and Scleroderma. It takes almost nothing to trigger a flare. My daughter developed frostbite inside of the school cafeteria! That's when you start to make life-altering changes. She wasn't allowed to wear shorts or skirts, she had to keep jackets, mittens and hand warmers with her at all times and she had to wear 2 undershirts under her clothes until she was finally started on medicine for it.
They say that usually siblings don't get diagnosed but I personally believe that their figures are flawed. I am on several JA boards and between those and my couple hundred parents on my Facebook, we see many siblings becoming affected. I would try hard not to get paranoid but always be on the lookout for symptoms.
As for helpful hints, these are some things that we do.
-For
injections, ask your doctor to prescribe numbing cream. This numbs the area so your child doesn’t
feel the sting. This has been a miracle for us. You may try to use it for lab work also, but it can make the veins roll or "hide".
-Welts
or itching after injections: always consult doctor but often a small dose of
allergy medicine will help lessen the itch. My kids like to use ice after an injection, also. We make sure to warm the medicine up with body heat first before injecting, but have an ice pack nearby for after.
-A
heated mattress pad can take away much of the morning stiffness. This can be used year-round. This was another huge miracle for us. (NOTE: Do not
sleep with a heating pad for safety purposes.)
-A
heating pad will help a lot, but if you can’t take one with you, make a sock
filled with rice. This can be heated in
the microwave for a minute and placed in lieu of a heating pad. There are also small hand warming pads that are disposable that can be used as a heating pad. They don't get as hot but they are much more portable!
-A
nice hot bath can do wonders for stiffness and pain. There are some bath additives out there labeled to help with pain!
- We had a friend that told us about magnet therapy. Emily swears by magnet therapy. She always keeps an anklet with magnets on for her ankle and knee. She swears that it works. I couldn't tell you how, but she's convinced.
- We had a friend that told us about magnet therapy. Emily swears by magnet therapy. She always keeps an anklet with magnets on for her ankle and knee. She swears that it works. I couldn't tell you how, but she's convinced.
-Peppermint
can help with nausea
-Sleep
disturbances- We haven't really figured out anything good for this yet. Emily does pretty well just settling herself back down now. In the past before she was on a prescribed NSAID (non- steroidal anti-inflammatory) we used to give her a little pain relief on the bad nights.
-Relaxing the jaw- We only just started dealing with jaw issues in the past few months. Thankfully, so far so good with that. I was told in the Juvenile Arthritis Conference session on jaw JA that up to 83% of the kids actually have jaw arthritis but it's silent (painless) until it becomes very bad. I was extremely grateful to hear that, because when my son told me two months later that his jaw hurt, I got the ball rolling! (He currently has the Juvenile Psoriatic Arthritis diagnosis.)
-Research everything as much as you can!!! Knowledge is power, and the more you know that more of a help you can be to your child. The doctors are human- they will not always be correct. Doing your own research can make your family less of a victim and more empowered.
-Get copies of any tests and add them to a thumb drive or disk. This makes it easier if you are hospitalized or if you have to see another doctor. Also, look over your labwork reports. Just because a doctor orders blood work to be done doesn't mean that they are seeing it! If you see something that doesn't look right, bring it up to your doctor.
-Get copies of any tests and add them to a thumb drive or disk. This makes it easier if you are hospitalized or if you have to see another doctor. Also, look over your labwork reports. Just because a doctor orders blood work to be done doesn't mean that they are seeing it! If you see something that doesn't look right, bring it up to your doctor.
-Talk to your child, and tell them as much as you can to help them to understand what is happening to them. Put yourself in their position. If you were 5, 10, 15 and just starting to go through something like arthritis, how scared would you be? They need to understand some of what is happening. Also, help them to know what medicines they are taking. If they are hospitalized and you are not in the room when they get their meds, they may be over or under medicated. (Yes, that has happened to us, but thankfully Emily knows what to take and she stopped it!)
-Your child should be pretty free to do whatever sport he or she would like to do as long as they can. If it hurts they should stop or slow down, but moving the joints will help to lubricate them. They should be free to set their own limits within reason.
-If your child has arthritis in the hands have them take little tiny toys (like the kind you find in gumball machines) in their pockets to play with all day. Play Doh and squishy balls are also good for hand exercises.
-If they can stand the heat, get a paraffin bath. That can really help the hands a lot.
And if you have any questions that I haven't covered, please feel free to ask them! Here are some links that I have used to get better information.
And if you have any questions that I haven't covered, please feel free to ask them! Here are some links that I have used to get better information.
Tuesday, March 27, 2012
March doctor & IV appointment
Before I talk about our day and the general health of my family, I would like to ask for prayers for all of our juvenile arthritis friends. Some are suffering from severe systemic affects of the disease, some are suffering from psychological affects, and some from related conditions (because dontcha know that having one autoimmune condition can open up a whole new can of worms). One friend who is only around Emily's age is having his colon removed. He's only between 10-12. We have friends who suffer from more autoimmune diseases than you have fingers on your hands. Painful GI related diseases, and of course other systemic diseases. The worst that we have seen is Dermatomyositis, which is horrible, but I know that some suffer more than what we've seen.
Emily asked me yesterday what would have happened if she didn't get treated for her DM, if they didn't know what it was or if we hadn't changed doctors. I had to explain to her that not only can it affect your internal organs but it can also affect swallowing and breathing. She did have some esophogeal dysphasia (weakened throat muscles). If she wasn't treated shortly after she was, she likely would have required a breathing tube until the inflammation was under control and the muscle tissue was rebuilt. This is what DM kids face, and while there aren't a few million of them, there are too many kids suffering. Please pray for all children with autoimmune diseases. They are a terrible way to have to live.
We are very blessed that, while Emily has her share of challenges and hard times, she isn't suffering the way that many kids are right now. Not to say that she has it easy- she does not. But she's not doubled over in pain 24/7 or losing blood constantly, she can eat and sleep and walk. That's a pretty good day right there. We continue to deal with the chronic sinus infections. She has another few days of antibiotics. Our hope is that this round of IViG will kick in and boost her immune system up more. Her Igg counts on her labs from yesterday looked pretty good, but next month when she gets her Rituxan next (along with Remicade & IViG all in one day, likely overnight) they will drop so it's important to continue to boost her Igg. This is how it works a bit: Remicade blocks anti-TNF alpha, Rituxan wipes out the 'B' cells. The combination wipe out the immune system. IViG builds the immune system back up. Things like the particular form of sinus infection that she has are caused by the immune system being too low. If we can boost it enough she may shake this thing yet. They ran the IViG over 4 hours again so I'm a bit worried, but it's a different dose & a different brand. Apparently they use one brand for outpatient & one for inpatient. Outpatient's get the brand that causes fewer side effects. Here's hoping. If she's going to react then it should happen between 3-5 today.
Otherwise she looks good. She's had some back, ankle, knee, shoulder and toe pain, but they are not visibly swollen or red. We discussed her Prednisone taper and the scare that we had, and we are now working on going from 1.25mls to 1ml. (3mgs).
Camp called us today to talk about our applications. They said that they won't release who is accepted until May 1st but I don't think they called me last year, the only year that Emily didn't get in. They confirmed that they received all of our paperwork from us, our pedi & our rheumy's, so hopefully they will both be accepted! As much as we'll miss them we know how good it is for them. I love them so much my heart melts! And that's about it for now. I have to steal a quick nap. The day after hospital wipes us both out. Good day to ya :)
Emily asked me yesterday what would have happened if she didn't get treated for her DM, if they didn't know what it was or if we hadn't changed doctors. I had to explain to her that not only can it affect your internal organs but it can also affect swallowing and breathing. She did have some esophogeal dysphasia (weakened throat muscles). If she wasn't treated shortly after she was, she likely would have required a breathing tube until the inflammation was under control and the muscle tissue was rebuilt. This is what DM kids face, and while there aren't a few million of them, there are too many kids suffering. Please pray for all children with autoimmune diseases. They are a terrible way to have to live.
We are very blessed that, while Emily has her share of challenges and hard times, she isn't suffering the way that many kids are right now. Not to say that she has it easy- she does not. But she's not doubled over in pain 24/7 or losing blood constantly, she can eat and sleep and walk. That's a pretty good day right there. We continue to deal with the chronic sinus infections. She has another few days of antibiotics. Our hope is that this round of IViG will kick in and boost her immune system up more. Her Igg counts on her labs from yesterday looked pretty good, but next month when she gets her Rituxan next (along with Remicade & IViG all in one day, likely overnight) they will drop so it's important to continue to boost her Igg. This is how it works a bit: Remicade blocks anti-TNF alpha, Rituxan wipes out the 'B' cells. The combination wipe out the immune system. IViG builds the immune system back up. Things like the particular form of sinus infection that she has are caused by the immune system being too low. If we can boost it enough she may shake this thing yet. They ran the IViG over 4 hours again so I'm a bit worried, but it's a different dose & a different brand. Apparently they use one brand for outpatient & one for inpatient. Outpatient's get the brand that causes fewer side effects. Here's hoping. If she's going to react then it should happen between 3-5 today.
Otherwise she looks good. She's had some back, ankle, knee, shoulder and toe pain, but they are not visibly swollen or red. We discussed her Prednisone taper and the scare that we had, and we are now working on going from 1.25mls to 1ml. (3mgs).
Camp called us today to talk about our applications. They said that they won't release who is accepted until May 1st but I don't think they called me last year, the only year that Emily didn't get in. They confirmed that they received all of our paperwork from us, our pedi & our rheumy's, so hopefully they will both be accepted! As much as we'll miss them we know how good it is for them. I love them so much my heart melts! And that's about it for now. I have to steal a quick nap. The day after hospital wipes us both out. Good day to ya :)
Thursday, March 1, 2012
Our new plan!
Ok, so again I am completely exhausted. Forgive me if this doesn't make any sense, but I want to get it out before I forget it all. We had another crazy day. Hospital time runs at a totally different speed than real time. It really seemed like I woke up, blinked, and the day was gone. I didn't even get time to just chill out on Facebook. Emily got quite a bit done. She was up early, got some TV time in, went to the playroom for a while, found a book to read that she enjoyed, played some video games, made some creations and watched a couple of movies.
I started my day by running 2 toys that were given to us to take to the infusion room. I figured that while I was there I would get a copy of her labs. I figured that they may be off a little, but I didn't expect them to be completely out of whack. I was shocked at how many exclamation points there were. (They indicate levels out of range.) Her inflammatory markers are elevated, but with an infection that is to be expected. Her urine was all messed up, but they said that looked more like a contaminated sample. (Phew!) Her liver enzymes (used to measure her muscle activity) look fantastic! Those running amok is one of my biggest fears. Almost everything else was off, though. That worried me, of course. I patiently waited for a few hours to see a doctor. Praise the Lord, we have been through enough of this to not worry just because something looks like it may be a problem. Problems usually seem to not be so glaringly obvious with us.
Towards the end of the day one of the doctors came in. Before I go further, let me say that one thing that I love about our rheumy group is that they don't just treat what looks rheumatological and hope someone else will deal with the "other stuff". Dr. E asked the Infectious Disease doctor to come talk to us. Let me tell you- I was soooo excited to see her. Dr. E had told Dr. V that she had ordered the Rocephin antibiotic because it's very good for sinus infections. We explained once again how the past few months have gone, listing each antibiotic and the amount of time prescribed. We established that I need to be more firm with these other doctors when it comes to prescribing antibiotics for an actual infection. I admit, that's not something that I'm good at. I feel that, while I do probably know more about rheumatology than they do, it's not my place to tell them how to do their jobs, and while I should have a medical degree, I don't actually. We talked about that for a while. She said that she would never prescribe less than a 21 day course of antibiotics for anyone for a sinus infection- never mind an immune suppressed child! I will now be more firm on that.
Despite me asking the ENT's to send over her file, despite me signing paperwork on Monday for them to do just that, they haven't done it yet. Dr. E had her nurse practitioner working on it, too. That said, they could only rely on what I was told by the ENT's from the first culture, which was that it was weak to Augmentin. Knowing that Augmentin was the only antibiotic that seemed to do anything (except for a few days before her scraping when it seemed to stop working) they prescribed a 21 day course. They also want us to keep doing IViG monthly to boost her immune system back up and then maintain it. Yesterday's labwork showed her Igg at 435. They usually do IViG for levels that fall below 500. I feel a huge sense of relief with this.
As I said in yesterday's post, we will wait two weeks to resume her Methotrexate, and then it will be at a lowered dose to begin with. She's one of the few kids that loves her Methotrexate because it helps her to not be so itchy. Dermatomyositis can cause severe itchiness, and even though hers is much better now than it was since her muscles aren't flaring, it's still annoying. I'm more excited about the Prednisone decrease!!! Again, a drop from 4.5mgs (1.5mls) to 3mgs (1ml) is huge!!! She'll have two weeks on 1.25mls, but that's ok. It's been so long since she's had a decrease. I realize that the slower the decrease the less chance of flaring so I wasn't complaining, but perhaps on the new dose she'll be able to lose some more water weight. She is still so self-conscious. And that should help her growth to get back to a more normal rate.
Last but not least, we had a roommate this time. Bless her heart, the girl has Crohn's Disease. She was given the option between trying Remicade via IV or trying a feeding tube at night with formula that would help to heal her colon. She really thought that the tube would be a good idea. That poor girl cried and cried, begging her mom to take it out. Before we left she decided that she would try Remicade- despite having a huge fear of needles. We were able to help them feel more confident about their decision, and give them some idea on what to expect. God puts people where they need to be. I truly think that we may have helped them a bit tonight. I hope so!!! I am hoping that Emily feels much better in the morning, too!
*Written at 12:04 A.M.*
I started my day by running 2 toys that were given to us to take to the infusion room. I figured that while I was there I would get a copy of her labs. I figured that they may be off a little, but I didn't expect them to be completely out of whack. I was shocked at how many exclamation points there were. (They indicate levels out of range.) Her inflammatory markers are elevated, but with an infection that is to be expected. Her urine was all messed up, but they said that looked more like a contaminated sample. (Phew!) Her liver enzymes (used to measure her muscle activity) look fantastic! Those running amok is one of my biggest fears. Almost everything else was off, though. That worried me, of course. I patiently waited for a few hours to see a doctor. Praise the Lord, we have been through enough of this to not worry just because something looks like it may be a problem. Problems usually seem to not be so glaringly obvious with us.
Towards the end of the day one of the doctors came in. Before I go further, let me say that one thing that I love about our rheumy group is that they don't just treat what looks rheumatological and hope someone else will deal with the "other stuff". Dr. E asked the Infectious Disease doctor to come talk to us. Let me tell you- I was soooo excited to see her. Dr. E had told Dr. V that she had ordered the Rocephin antibiotic because it's very good for sinus infections. We explained once again how the past few months have gone, listing each antibiotic and the amount of time prescribed. We established that I need to be more firm with these other doctors when it comes to prescribing antibiotics for an actual infection. I admit, that's not something that I'm good at. I feel that, while I do probably know more about rheumatology than they do, it's not my place to tell them how to do their jobs, and while I should have a medical degree, I don't actually. We talked about that for a while. She said that she would never prescribe less than a 21 day course of antibiotics for anyone for a sinus infection- never mind an immune suppressed child! I will now be more firm on that.
Despite me asking the ENT's to send over her file, despite me signing paperwork on Monday for them to do just that, they haven't done it yet. Dr. E had her nurse practitioner working on it, too. That said, they could only rely on what I was told by the ENT's from the first culture, which was that it was weak to Augmentin. Knowing that Augmentin was the only antibiotic that seemed to do anything (except for a few days before her scraping when it seemed to stop working) they prescribed a 21 day course. They also want us to keep doing IViG monthly to boost her immune system back up and then maintain it. Yesterday's labwork showed her Igg at 435. They usually do IViG for levels that fall below 500. I feel a huge sense of relief with this.
As I said in yesterday's post, we will wait two weeks to resume her Methotrexate, and then it will be at a lowered dose to begin with. She's one of the few kids that loves her Methotrexate because it helps her to not be so itchy. Dermatomyositis can cause severe itchiness, and even though hers is much better now than it was since her muscles aren't flaring, it's still annoying. I'm more excited about the Prednisone decrease!!! Again, a drop from 4.5mgs (1.5mls) to 3mgs (1ml) is huge!!! She'll have two weeks on 1.25mls, but that's ok. It's been so long since she's had a decrease. I realize that the slower the decrease the less chance of flaring so I wasn't complaining, but perhaps on the new dose she'll be able to lose some more water weight. She is still so self-conscious. And that should help her growth to get back to a more normal rate.
Last but not least, we had a roommate this time. Bless her heart, the girl has Crohn's Disease. She was given the option between trying Remicade via IV or trying a feeding tube at night with formula that would help to heal her colon. She really thought that the tube would be a good idea. That poor girl cried and cried, begging her mom to take it out. Before we left she decided that she would try Remicade- despite having a huge fear of needles. We were able to help them feel more confident about their decision, and give them some idea on what to expect. God puts people where they need to be. I truly think that we may have helped them a bit tonight. I hope so!!! I am hoping that Emily feels much better in the morning, too!
*Written at 12:04 A.M.*
Monday, February 27, 2012
Frustrated
While I try very, very hard to remain positive 99% of the time, I am far from immune to rough weeks. This has been one of them. This week I find myself simply discouraged. For once, I look around and see more negative than positive. I hate that. I am trying very hard to build myself back up, but it's not been easy.
I had spoken to our ENT's office twice last week. First because Em was more stuffy than she was after the first week on antibiotics. Granted, she didn't have a fever, but that is pretty normal for her. She had been draining a LOT still- more than I though was normal. They told me to just keep using saline. I was having a hard time expressing myself with this. I couldn't prove that she was sick, but sure seemed to be doing about what she was when she was sick. When they called to confirm our appointment I brought it up again. I didn't think that she could wait until today, but she did!
Friday morning I had a very hard time getting her up. She was struggling, teary-eyed, and not very with it. She was coughing. A lot. And, just when it was time to leave, my son yells to me, "MOM! Emily is vomiting mucus". Woot! She spent about ten minutes vomiting. This is seriously just not fair to her, and it's breaking my heart. All that she wants is to get better. She agreed to the surgery because it is supposed to help.
Today we went back for stage II of the surgery. By this point her eyes are all bloodshot, around her eyes is bright red, she has what looks like a popped blood vessel- all from coughing. She sounds all junky, and she's still very sniffly. I knew that they wouldn't declare her "fixed". I wasn't expecting more non-answers. (Not their fault- they want scientific evidence.) They did a culture to make sure that there is no lingering infection. They told me today that, while she is still congested, she's not really junked-up in the sinus cavities. The inside of her nose is still very inflamed. He said that usually this type on inflammation is more of a systemic reaction, often from other problems like reflux. Well, I can rule reflux out since she's on an adult dose of Prilosec as it is.
I had pretty much figured that I would be calling her rheumatologists shortly after our appointment, but I wasn't really expecting to tell them that this may be arthritis-related. So, I called them to tell them about the nasal inflammation, beg them for IViG (to help boost her immune system) and also to tell them about her brand new jaw pain. I was really, really hoping this would be the result of blocked sinuses or another infection. The ENT checked her ears, analyzed the sinus drainage, felt her jaw, and determined that this isn't his department. Her lymph nodes are swollen, too. Fortunately, her rheumie's office called me back tonight. We are staying at the hospital tomorrow night for her IViG. She didn't technically have an appointment scheduled to see the doctor, but they are going to look at her given how much is going wrong right now. For that I am very grateful. I just feel so helpless right now. One thing that people don't understand is how great the risk of infection is for these kids. She is at a much higher risk of dying from a silly little infection that healthy people can shake off without a thought. Another reason why we strive to gain awareness: this is much more serious than people often realize, and it can be very deadly.
So, currently I am frustrated with this stupid sinus infection that is really messing with her. I am frustrated that I don't have a medical degree so that doctor's that don't really know me will listen to me. And I am frustrated that I can't keep her home on days like Friday when she really needs to be home, away from kids that are germy and sent to school anyway. It makes me feel so terrible for her! I also feel that perhaps both of my kids would be doing better in school if I could home school them. We are working on it. I know that things will work out. I just would like that to happen now, please!!!
I had spoken to our ENT's office twice last week. First because Em was more stuffy than she was after the first week on antibiotics. Granted, she didn't have a fever, but that is pretty normal for her. She had been draining a LOT still- more than I though was normal. They told me to just keep using saline. I was having a hard time expressing myself with this. I couldn't prove that she was sick, but sure seemed to be doing about what she was when she was sick. When they called to confirm our appointment I brought it up again. I didn't think that she could wait until today, but she did!
Friday morning I had a very hard time getting her up. She was struggling, teary-eyed, and not very with it. She was coughing. A lot. And, just when it was time to leave, my son yells to me, "MOM! Emily is vomiting mucus". Woot! She spent about ten minutes vomiting. This is seriously just not fair to her, and it's breaking my heart. All that she wants is to get better. She agreed to the surgery because it is supposed to help.
Today we went back for stage II of the surgery. By this point her eyes are all bloodshot, around her eyes is bright red, she has what looks like a popped blood vessel- all from coughing. She sounds all junky, and she's still very sniffly. I knew that they wouldn't declare her "fixed". I wasn't expecting more non-answers. (Not their fault- they want scientific evidence.) They did a culture to make sure that there is no lingering infection. They told me today that, while she is still congested, she's not really junked-up in the sinus cavities. The inside of her nose is still very inflamed. He said that usually this type on inflammation is more of a systemic reaction, often from other problems like reflux. Well, I can rule reflux out since she's on an adult dose of Prilosec as it is.
I had pretty much figured that I would be calling her rheumatologists shortly after our appointment, but I wasn't really expecting to tell them that this may be arthritis-related. So, I called them to tell them about the nasal inflammation, beg them for IViG (to help boost her immune system) and also to tell them about her brand new jaw pain. I was really, really hoping this would be the result of blocked sinuses or another infection. The ENT checked her ears, analyzed the sinus drainage, felt her jaw, and determined that this isn't his department. Her lymph nodes are swollen, too.
So, currently I am frustrated with this stupid sinus infection that is really messing with her. I am frustrated that I don't have a medical degree so that doctor's that don't really know me will listen to me. And I am frustrated that I can't keep her home on days like Friday when she really needs to be home, away from kids that are germy and sent to school anyway. It makes me feel so terrible for her! I also feel that perhaps both of my kids would be doing better in school if I could home school them. We are working on it. I know that things will work out. I just would like that to happen now, please!!!
Tuesday, January 31, 2012
Another good rheumy appointment for both
Yesterday was a very long but good day. Taking two kids to the hospital for 8 hours isn't really my idea of a good time. It's rushed and crazy when you're taking one child, but two presents a whole new challenge. Thankfully I have some really great kids, but it's still difficult. Filling out everyone's paperwork, getting drinks and snacks, just getting settled! I brought the laptop, foolishly thinking that I could get some work done. In reality my son used it more than I did. It was a great distraction since he was kind of driving me crazy.
For once we stayed at a hotel. I didn't want to have to get up at 4 A.M. to drive up. Not with 2 kids. The morning went just as planned, except that I didn't sleep. Emily's new antibiotic isn't doing a whole lot, so she was coughing most of the night, which kept me up. I was afraid that it was waking her up, but in reality she actually slept. We got up on time, packed up, had time for breakfast and got to the hospital with time to spare.
The doctor saw Zachary first. Despite us keeping the other staff in the loop, he didn't know that Zach had only just received his Enbrel in the mail. He had thought that he would have had 2 full months on it by this point, but in reality he only had one full dose. We could see that the Methotrexate is doing what it's supposed to be doing. His jaw pain has been minimal, and the psoriasis plaques look much less angry. Still present, but not terrible. Again the doctor noted that Zach's hands look like Emily's... without the steroid swelling. It really is curious. I pointed out that the psoriasis is trying to take over his joints. He didn't really say much about that other than agreeing with me. We agreed to keep on the same track with him as we are, making sure we get him in to the opthamologist and have his labs repeated in two months. His liver enzymes are up. His ALP and Sodium are off, too. In reading up, it looks as though a low ALP often shows a Vitamin D deficiency, and many people with autoimmune issues are vitamin D deficient.
Emily requires much more time, so he left and came back to us. That gave me some time to call her ENT and see if we have a surgery date yet. Apparently they hadn't thought about that yet, so they scheduled it with me on the phone. We are set for February 22nd for the first procedure and March 13th for the second. Our rheumy was upset that she hasn't consistently been on one antibiotic for 21 days. I need to make sure if either of my 2 little children has an actual sinus infection that they stay on antibiotics for a full 21 days. I pointed out the red dots that she keeps getting. It's really strange. He said that these spots look like spots that some people get when their white cells crash, but hers look good. Very odd. Thanks to the ENT's calling for surgical clearance, they ran the immune system panel. Honestly, I feel that she should probably be on monthly IViG, but I don't want to bring it up. I don't want to pump more into her than we have to, and she's already on a ton of medicine. We discussed that her ankles, knees, hips, wrists and back have been flaring mildly in the joints. Praise the Lord her muscles are quiet!!! We also discussed her sinus problems.
So, I am blessed with pediatricians that realize that I know what's going on. They LISTEN to me. They may not always agree which is fine- they have the medical degree, so we try it their way. But they listen. Since November Emily has been on :
Septra- (Sulfamethoxazole-TMP) January 27, 2012
Augmentin 600MG - January 19, 2012
Omnicef 250MG- January 13, 2012 (Again did nothing but make her more sick)
Augmentin 600- December 28, 2011
Clindamycin HCL- December 14, 2011
Omnicef 250MG- December 11, 2011 (Did nothing- she got sicker)
Augmentin 600MG - November 28, 2011
When the last round of Augmentin stopped working midway through, I called and begged them to please give her one more round of a different antibiotic to hold us until her surgery. Foolishly, I thought the surgery would be a week or two. Knowing that Augmentin wouldn't work, nor would Omnicef, I asked for either Clindamycin or Septra. I prefer Clindamycin for 2 reasons: because Zach & I are allergic to Septra and because Septra can increase the toxicity of Methotrexate. In English that means that this antibiotic could make her one arthritis/ myositis med work too well, like at a higher concentration. So, I told them that I would be willing to discontinue her MTX if they prescribed Septra. It is a triple antibiotic, and she hasn't used it ever, I think. Our rheumy's biggest concern was that it wasn't prescribed for long enough. I asked him if I should give her the MTX at a half dose, but he said not to worry because she has so many other meds going. Of course, she actually likes her MTX, unlike most kids. (Dermatomyositis causes severe itching, but the MTX decreased it a lot.) Moral of the story- he gave us another prescription for 15 more days of Septra. He believes that her arthritis is acting up because of the sinus infection, and once that finally clears she should be better. I had figured that, too. It's nice to be on the same page. And that was about the gist of it.
Today, we were all exhausted. It's a very long day, especially because first they do pre-meds, then SoluMedrol takes about an hour to infuse, Remicade takes about 3-4 hours, and Rituxan is set for 4 hours. She's wiped the next day, but so am I. Even Zach was wiped. We did almost nothing today, but I did make her go to therapy. And she cried a little because stretching is so hard, but overall she did very well today.
I can't tell you how amazed I am with her, how in awe of her I am. She will correct you if you call her medicines the wrong name, she will spout off the list of her meds, she will talk to you like she's a doctor, but at the end of the day she's acting like a cute squirrel that just wants to be petted. She is truly such a joy, so sweet, so wise. I am so blessed. <3
For once we stayed at a hotel. I didn't want to have to get up at 4 A.M. to drive up. Not with 2 kids. The morning went just as planned, except that I didn't sleep. Emily's new antibiotic isn't doing a whole lot, so she was coughing most of the night, which kept me up. I was afraid that it was waking her up, but in reality she actually slept. We got up on time, packed up, had time for breakfast and got to the hospital with time to spare.
The doctor saw Zachary first. Despite us keeping the other staff in the loop, he didn't know that Zach had only just received his Enbrel in the mail. He had thought that he would have had 2 full months on it by this point, but in reality he only had one full dose. We could see that the Methotrexate is doing what it's supposed to be doing. His jaw pain has been minimal, and the psoriasis plaques look much less angry. Still present, but not terrible. Again the doctor noted that Zach's hands look like Emily's... without the steroid swelling. It really is curious. I pointed out that the psoriasis is trying to take over his joints. He didn't really say much about that other than agreeing with me. We agreed to keep on the same track with him as we are, making sure we get him in to the opthamologist and have his labs repeated in two months. His liver enzymes are up. His ALP and Sodium are off, too. In reading up, it looks as though a low ALP often shows a Vitamin D deficiency, and many people with autoimmune issues are vitamin D deficient.
Emily requires much more time, so he left and came back to us. That gave me some time to call her ENT and see if we have a surgery date yet. Apparently they hadn't thought about that yet, so they scheduled it with me on the phone. We are set for February 22nd for the first procedure and March 13th for the second. Our rheumy was upset that she hasn't consistently been on one antibiotic for 21 days. I need to make sure if either of my 2 little children has an actual sinus infection that they stay on antibiotics for a full 21 days. I pointed out the red dots that she keeps getting. It's really strange. He said that these spots look like spots that some people get when their white cells crash, but hers look good. Very odd. Thanks to the ENT's calling for surgical clearance, they ran the immune system panel. Honestly, I feel that she should probably be on monthly IViG, but I don't want to bring it up. I don't want to pump more into her than we have to, and she's already on a ton of medicine. We discussed that her ankles, knees, hips, wrists and back have been flaring mildly in the joints. Praise the Lord her muscles are quiet!!! We also discussed her sinus problems.
So, I am blessed with pediatricians that realize that I know what's going on. They LISTEN to me. They may not always agree which is fine- they have the medical degree, so we try it their way. But they listen. Since November Emily has been on :
Septra- (Sulfamethoxazole-TMP) January 27, 2012
Augmentin 600MG - January 19, 2012
Omnicef 250MG- January 13, 2012 (Again did nothing but make her more sick)
Augmentin 600- December 28, 2011
Clindamycin HCL- December 14, 2011
Omnicef 250MG- December 11, 2011 (Did nothing- she got sicker)
Augmentin 600MG - November 28, 2011
When the last round of Augmentin stopped working midway through, I called and begged them to please give her one more round of a different antibiotic to hold us until her surgery. Foolishly, I thought the surgery would be a week or two. Knowing that Augmentin wouldn't work, nor would Omnicef, I asked for either Clindamycin or Septra. I prefer Clindamycin for 2 reasons: because Zach & I are allergic to Septra and because Septra can increase the toxicity of Methotrexate. In English that means that this antibiotic could make her one arthritis/ myositis med work too well, like at a higher concentration. So, I told them that I would be willing to discontinue her MTX if they prescribed Septra. It is a triple antibiotic, and she hasn't used it ever, I think. Our rheumy's biggest concern was that it wasn't prescribed for long enough. I asked him if I should give her the MTX at a half dose, but he said not to worry because she has so many other meds going. Of course, she actually likes her MTX, unlike most kids. (Dermatomyositis causes severe itching, but the MTX decreased it a lot.) Moral of the story- he gave us another prescription for 15 more days of Septra. He believes that her arthritis is acting up because of the sinus infection, and once that finally clears she should be better. I had figured that, too. It's nice to be on the same page. And that was about the gist of it.
Today, we were all exhausted. It's a very long day, especially because first they do pre-meds, then SoluMedrol takes about an hour to infuse, Remicade takes about 3-4 hours, and Rituxan is set for 4 hours. She's wiped the next day, but so am I. Even Zach was wiped. We did almost nothing today, but I did make her go to therapy. And she cried a little because stretching is so hard, but overall she did very well today.
I can't tell you how amazed I am with her, how in awe of her I am. She will correct you if you call her medicines the wrong name, she will spout off the list of her meds, she will talk to you like she's a doctor, but at the end of the day she's acting like a cute squirrel that just wants to be petted. She is truly such a joy, so sweet, so wise. I am so blessed. <3
Saturday, January 14, 2012
Arthritis is FINALLY getting some press!
For years now, many of our arthritis parents have felt that we needed a celebrity to speak out, to help us to champion the cause. As Christine Schwab says in her new book "Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me", arthritis has such a stigma associated with it; it is taboo in Hollywood. People are so into their stereotyping of the disease that they try not to look at it... what little they see of it is with blinders on. Because it is associated with aging and the elderly and Hollywood is all about being young and perfect, no one wants to acknowledge it. This has robbed us of money that a celebrity could raise for research. A cure will never be found if no one is researching.
As a parent, dealing with the stigma is very hard. You have people that don't believe you when you say that your child has arthritis. You have people that assume that you must be doing something wrong as parents. People look at a child on steroids... and judge that child and the parents. It is a heartbreaking cycle. This is why I choose to speak out. After a year on steroids, my daughter is still so embarrassed that she doesn't want her pictures taken, she doesn't want to be on stage or in a position where people will be looking at her. For a ten year old, what she has been going through is very, very tough. She handles her life with a positive attitude, confidence in herself, and a deeper wisdom that a hard life teaches you. There is something about these sick kids...
Anyway, back to my point. Christine Schwab was asked to appear on an episode of "The Doctors" show! She spoke about Rheumatoid Arthritis and the stigma associated with it. You can watch her episode here. We are so excited by what Christine is doing! Fighting this battle for 20 years herself, she fully understands what we are going through. She is becoming quite the advocate for our children, and we are so thrilled. This truly is an exciting time to have RA or any form of arthritis. There are so many people striving to gain awareness, like Kelly the RA Warrior, & Rheumatoid Arthritis Guy. There are new drugs that are being looked at; there have been so many amazing drugs that have been approved that are making some serious differences. My favorite always has and likely always will be Enbrel. No, it doesn't work for everyone, but it was a miracle for Emily. While we continue to wait for the green light from insurance to use it for my son, we pray that it will be a miracle for Zachary as well.
They still have no idea how autoimmune arthritis happens. There seem to be different triggers for everyone. Some people have severe food allergies or sensitivities. (For those people, drastically changing diet seems to work well.) For some people, serious infections like strep seem to do it. There are environmental triggers. They believe that it's like flipping a switch; once the trigger is released, the arthritis starts.
Some people have done very well by drastically changing their diet. Most don't. Some people benefit from glucosamine. Some people swear by long-term antibiotic use. Most people find their relief instead from drugs like Enbrel, Humira, Remicade, Rituxan, Actemra, and Symponi. These drugs are incredibly expensive, but they work. For most. But this isn't enough. We need more answers. We need a CURE.
As a parent, dealing with the stigma is very hard. You have people that don't believe you when you say that your child has arthritis. You have people that assume that you must be doing something wrong as parents. People look at a child on steroids... and judge that child and the parents. It is a heartbreaking cycle. This is why I choose to speak out. After a year on steroids, my daughter is still so embarrassed that she doesn't want her pictures taken, she doesn't want to be on stage or in a position where people will be looking at her. For a ten year old, what she has been going through is very, very tough. She handles her life with a positive attitude, confidence in herself, and a deeper wisdom that a hard life teaches you. There is something about these sick kids...
Anyway, back to my point. Christine Schwab was asked to appear on an episode of "The Doctors" show! She spoke about Rheumatoid Arthritis and the stigma associated with it. You can watch her episode here. We are so excited by what Christine is doing! Fighting this battle for 20 years herself, she fully understands what we are going through. She is becoming quite the advocate for our children, and we are so thrilled. This truly is an exciting time to have RA or any form of arthritis. There are so many people striving to gain awareness, like Kelly the RA Warrior, & Rheumatoid Arthritis Guy. There are new drugs that are being looked at; there have been so many amazing drugs that have been approved that are making some serious differences. My favorite always has and likely always will be Enbrel. No, it doesn't work for everyone, but it was a miracle for Emily. While we continue to wait for the green light from insurance to use it for my son, we pray that it will be a miracle for Zachary as well.
They still have no idea how autoimmune arthritis happens. There seem to be different triggers for everyone. Some people have severe food allergies or sensitivities. (For those people, drastically changing diet seems to work well.) For some people, serious infections like strep seem to do it. There are environmental triggers. They believe that it's like flipping a switch; once the trigger is released, the arthritis starts.
Some people have done very well by drastically changing their diet. Most don't. Some people benefit from glucosamine. Some people swear by long-term antibiotic use. Most people find their relief instead from drugs like Enbrel, Humira, Remicade, Rituxan, Actemra, and Symponi. These drugs are incredibly expensive, but they work. For most. But this isn't enough. We need more answers. We need a CURE.
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