Stable!

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.

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. 

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!

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. 

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. 

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. 

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

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!  :)

Prayers 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.

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.

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.

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!

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.

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.

  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:  "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."  
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 really got me was the Chiari I Malformation.

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 googled Chiari, 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 somebody should call me back no later than Tuesday.  

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 NOT in the maxillary sinuses- just close to.  However, those are only her 2nd molars, and there is no room for them.    

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.  

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.

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.  

Thankful

Back in 2007 before my children were diagnosed, I was a wreck.  I was extremely depressed.  Nothing in the world could make me happy.  I was crying on my way to work every day.  Yeah- every day.  Aside from trying to raise my family, I had no idea of what else to do with my life- no clear direction.  I was a mess.

After Emily was unofficially diagnosed with Juvenile Arthritis, I was lost... for a while.  I felt hopeless.  Until I stopped feeling sorry for myself and started thinking of how Emily must feel.  After all, she was the one hurting... not me!  I started researching, trying to understand this madness.  At that time, she could barely walk.  Almost every joint was affected.  Her anxieties were extremely high.  She didn't want anyone to touch her.  She couldn't sit on the floor because she couldn't get up. Her kindergarten teacher carried her around school.  Getting out of bed was a huge challenge.  She spent more time in the bath than anywhere else.  And she didn't know what it was like to spend a day out of pain.

Starting Naproxen gave her the first taste of normalacy.  Not that it was enough, mind you.  It took another 8 months to really feel what it was like to be free.  It took 7 months of Methotrexate and then starting Enbrel to help her.  Around that time, the Raynaud's started.  This and some skin tightening made her rheumy feel that perhaps she had Scleroderma.   Oddly enough, this was her good time.  This was the closest she has ever come to remission.  It lasted about a year.

This was also around the time that I realized that she really isn't mine; she was given to me, entrusted to us as parents.  We all belong to God, like it or not.  This is when I learned how to let go, and to trust.  It was pretty tough.  We faced her mortality in a way that no parent should have to.  It was also around this time that suddenly, all around me, I was finding blogs of parents whose children had brain tumors.  I didn't go out of my way looking for them;  they found me.   This helped me to see how blessed we were.  This was also around the time that the little peeps and I went back to church, the only place I can go to cry.  I felt that this was all a way of leading me back home to Him, and bringing the little ones to Him, too.  He was showing me how He was taking care of us.

Emily's diseases have helped our family in so many ways.  We went from being lost and out of touch with each other to being closer than almost any other families that we know.  No, it didn't happen overnight.  It took a lot of work and a lot of pain.  We count our blessings.  We look for the good in everything, because we know that time isn't guaranteed.  The longer she is sick, the more medicines get added to her already long list.  The longer she is sick, the more systemic effects pop up.  The throat issue really scares me.  I have heard of people that require surgery to reopen their throats.  I hope to God that it doesn't come to that.  I refuse to worry about things now until I know for sure that it needs to happen.  We go day-by-day, and we have for so long that it is just habit now.

We expect the possibility that one of the kids will be sick daily, or too tired or sore to go out.  It isn't because they don't want to go places, because they are usually disappointed when they have to miss out, or we rely on her wheelchair.  They have learned to deal with it, and enjoy the good days.  We embrace the good days, and just get through the lousy ones. I truly never know how any day will be.  She is so complex.  He isn't so much, but we need to be careful not to downplay his problems because hers are so much more severe.  I try hard not to trample on his feelings.  My sweet little man.  <3 p="p">
In the midst of this, we have met some of the most amazing families!  This has led me to having some of the coolest friends that I could ever imagine.  Some I have never actually met in person!  My Facebook friends that also have kids with similar problems have become like family.  It is so wonderful to have these people in my life... even if I rarely get the chance to chat with anyone right now!  (This, too, shall pass.)

I never thought that I would ever go to college, or even know what I wanted to do with my life.  Now I have clear direction, and I am empowered by how much I have learned through my research.   I would never have researched if first Emily, then Zachary, didn't get sick.  I have learned all about Dermatomyositis, which took me months to pronounce, as well as Lupus, Scleroderma, Raynaud's, Psoriasis, Psoriatic Arthritis, Spondylitis, and other little things.  I learned what patulous meant,  (spreading widely from a center patulous 
branches, according to Merriam Webster),  and I've learned about esophageal dysmotility and lung changes that warn of pulminary fibrosis.  As crappy as this might be, it has given me a confidence that I never before had, as well as a drive and motivation that I did not have before.  I made a vow to myself to be able to speak with the doctors on their level.  I am 95% there. I am so much stronger than I ever thought that I could be.  Ever.  And the kids?  They are way stronger than I am.
I never, EVER thought that I would be the type to homeschool my children, and yet here I am.  Granted, it is out of necessity, but still... There is no way that she could continue on in public school.  Just simply no way.  She had such a difficult time last year, but that has led to such a great adventure!  Now we have our butterfly garden, crabs and fish.  We have science everywhere!  Everything leads to learning.  I love it!!!  And we are in this together since I am also in school.  We appreciate each other and love each other like we may not have long, because you just never know.  I could get hit by a bus tomorrow.  What regrets would I have?  None.  Could you say the same thing?  Do you have your priorities straight?  Life is too short to worry about competitions and material things when it comes to family.  Drama is way over-rated.  Who needs it?  I don't have time for drama.  We are ecstatic that October wasn't spent with a long stay in the hospital for a third year in a row.  That rocks!!!  Yeah!  We are happy just to be here, just to be together.  That is what matters, and I am thankful and blessed.  Every. Single. Day.

Tough day

While most days I can manage to get through without seriously contemplating the kids' medical issues, for whatever reason, the drive to and from the hospital is where I really feel the stress of the situation. Even now with Em having a port, it is easier but once we're there and ready for them to access she really panics. Just thinking about the fact that they need to access my child is freaky, isn't it? I guess it's because going makes it all more real. Funny, really, since I'm with her when she's miserable or can't walk too, but that isn't as real as hanging at the hospital. Even now I have days where I mourn for my sweet tiny little bean pole that isn't anymore, thanks to steroids.  It seems awfully unfair sometimes, but we move on.

This trip started with the Pulminary Function Test. Now that it doesn't scare her, she actually enjoys it. I thinks she's a little crazy but hey, at least she does it without trauma. She did very well doing the test, & while the doctor hadn't seen the final report, he said the preliminary report looked great. The tech scared me a bit; he asked me with a concerned tone in his voice if we were seeing her doctor that day.  It was the way he said it that made me think, "uh-oh", but it really does seem to be ok.

Later, things were okay in the infusion room after she was hooked up. She screamed bloody murder first, but she calmed down soon after the needle went in. I guess she will always have major anxiety. I really had hoped that it would get better, but it just doesn't.  She screams like they're trying to kill her- flailing her arms and all- until the needle is in; then she relaxes.  She got her Orencia first, soon followed by her Rituxan. That is a huge relief since Rituxan is what helps her the most. I finally got to speak with someone about scheduling the swallow study. Naturally when they called me back, Em was screaming and I missed the call, but I managed to get them while still in the infusion room. They wanted to schedule the study for the 17th, when we already have appointments up that way on the 21st & the 27th.  If they weren't 2.5 hours away that would be fine. She hung up & called me back to tell me that they could do the swallow study while she is inpatient, but it needed a different referral than the outpatient one. That led to another round of calls because the check-in desk at the hospital doesn't document the way that the other staff does, so I actually had to call the doctor's office even though she sees them there. The funny thing is that not long after the person I left a message for found us in the infusion room. She said she'd find out & let me know what was up. That's the last time I spoke with her. That's cool- as long as it gets to the doctors I don't care. Long story short, they scheduled it for Thursday. That would have worked much better if pharmacy had sent her pre-meds up a few hours earlier. Instead of starting her IViG around 6, it was started at ten.

The plan was to finish the IViG as inpatient, then move to the infusion room for Remicade, while hopefully squeezing in the upper GI somewhere. Eventually they got her scheduled for her testing at two. They also ordered an x-ray for her arm because for once, Ms. Careful fell out of bed onto her arm! I really thought that she broke it. She never gets this upset!  And yes, I was pretty ticked off about that.  She fell while leaning out of her bed to pick something up off of the floor.  I had just told her that if she needed anything to let me know, and the nurse had just walked out of the room.  She'll make sure to ask next time, I'm sure. 

So they tell me that the plan was upper GI & x-rays at two, then Remicade. I pointed out that this would allow her 2 hours for a five hour infusion. (4 for Remicade, one for Solumedrol.). That is how we dropped Remicade & decided to go back to Enbrel. Yeah. Personally, I think it's a better move. I don't think Remicade has been as good for her as Enbrel was so I'm good with that. And we had talked about dropping it after if the Orencia worked for her, but we still have another month or two before it would be considered fully in effect.  That's why the Enbrel is back- probably.  He wants us to wait to see if she will really need it.  Again, I'm good with that.  Enbrel seemed to do more for her before anyway, but also this will allow us to go back to simple 5 hour infusions on the months that she doesn't need Rituxan.  That is awesome because staying overnight isn't really too much fun for anyone.  Benlysta was also thrown at me as a replacement for Rituxan.  I have read up quite a bit, and while I still have a lot more research to do, I think that we will stay with Rituxan.  Rituxan is an awesome medicine for her.  She feels it wearing off about a week before it is due, which is why they discussed switching.  From what I've read, people that do extremely well on Rituxan don't seem to do nearly as well on Benlysta.  It's like a downgrade.  Why go backwards? 

And then there was the upper GI.  She totally freaked out for it. She wanted x-rays of the arm so she was perfect for that but she was scared to death for the rest. The doctor wanted to reschedule but I begged them to do the test.  She just got herself so wound up.  I knew that if we put it off this would only happen again, but probably worse.  I know how she is, and she would be thinking about it every day for the next month until it happened, and then she would have had more time to make it worse in her head.  It needed to happen today for that, because she's been having a hard time eating lately, and because I feel that she's starting a Dermatomyositis flare.  I've seen the red dots reappear, I know she's had some muscle aches lately.  Knowing that she had the "air-filled esophagus" on the chest CT at least helped me to prepare for this.

So, I don't have any official results yet, but what I can tell you is that there is something going on. For those that haven't done this before, all that she had to do is swallow strawberry flavored barium while under a big camera.  The camera is like a video camera; they can watch the barium flow through her esophagus and into her stomach.  The problem is that it really didn't.  Yes, some flowed down, but quite a bit didn't.  And some of what did go down passed out of her stomach, but much of that stayed, too.  They called in an additional doctor to ask what to do.  In the end, we waited about ten minutes and they took one last picture of the barium that was still in her esophagus and stomach.  Is it from JDM, MCTD, possibly Scleroderma or from something different?  Not a clue.  I hope to find that out soon, along with what to do about it.  I'm just so glad that we did the test today.  I just knew that something was wrong.  I really hope that we don't have to go back up on her steroids.  That would really kill us.

We were told that we could go home right after, but we waited around to make sure that the x-rays didn't show a break.  I asked them to give her some pain meds, so they gave me a prescription.  Since they wrote for something that my CVS doesn't usually have, I filled it there.  They told me 30 minutes.  No worries.  After 45 minutes of waiting, I asked them if there was a problem.  They didn't have the correct insurance info right there.  So, instead of calling the cell phone number that I wrote on the scrip, they figured they would just wait until I wandered over there, then they told me it would be another ten minutes.  I was so mad!  I didn't say anything but I was fuming.  We ended up getting our meds as we were leaving, with me pushing her chair and carrying a suitcase, with 2 pillows and a bunch of our bags hanging from the chair.  (Laptop, sleeping bag, blankets, etc...)  I was not happy.  But we're home.  I am so glad that we're home.  Hopefully we will find out more soon.  I will keep everyone posted.  Prayers would be wonderful, please.  Especially for her throat issues and for no flare to hit.  Thank you to anyone that prays for us.  I am off to dreamland now.  I will leave you with the words to a Natalie Grant song that Emily loves off of Natalie's "Relentless" album.  The part that I have in bold I just can't even sing.  It tears me up every time.

"Our Hope Endures"

You would think only so much can go wrong
Calamity only strikes once
And you assume this one has suffered her share
Life will be kinder from here
Oh, but sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?

But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged

How do we comprehend peace within pain?
Or joy at a good man's wake?
Walk a mile with the woman whose body is torn
With illness but she marches on
Oh, 'cause sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?

But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged

Emmanuel, God is with us
El Shaddai, all sufficient
We never walk alone
And this is our hope

But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged

Quiet time

It's been a good week for me and Zach, but a rough one for Emily. Monday her shoulder and ankle hurt. By Tuesday, despite several rub downs, BioFreeze and a hot bath, the shoulder was really bad. Her occupational therapist rubbed it out. Em cried, she begged her to stop. We all knew that the benefit would outweigh the pain. Sure enough, she woke Wednesday able to move it with little pain. Her knees have been "tired" and her thighs have hurt. The thighs worry me the most. The thought of her JM coming back sends fear ripping through us all. Not as badly this time. The storms that we had in June threw our monthly med schedule off. While 2 of her meds are monthly, Rituxan is every 3 months. So far, it has been the drug that helps her the most. We would normally have gone for meds this week, so I'm sure that is why she is hurting.

We had placement testing yesterday for school. She got lucky; she wasn't entered into the computer yet, & the person that normally does it was in a meeting 2 hours away. She will be able to take it at home soon. We need to set up an IEP meeting for her before she's 100% clear. Zach is all set, complete with passwords for the online part.

Em has been determined to go to the beach for a while. Where our summers usually have a brief daily storm & usually drought levels, this year we have had more rain than we can believe. We finally got to the beach this evening. With her JM, a sunburn can cause her disease to flare, so we go when the threat is less. I'm sitting here at the beach now, watching them play, watching the sun go down. There is a constant breeze as I listen to the crash of the waves and the kids playing. It is a perfect end to my week. She's feeling good today, and the kids are so happy here.

Emily & Zach have such a special relationship. I love sharing their lives with them. I am in awe of them. I kept catching them hugging each other. So much love!

Oh, & on a last, different note, I am so proud of them. They have been sitting in my church services with me. While some adults may talk all through the service, my kids are clasping their hands & bowing their heads in prayer. I am just so proud of the people they are becoming. I am so ready to start homeschooling! I am so blessed to have this opportunity to be with them more. <3

Unexpected tests and such

I swear, sometimes I jinx us.  Just the other day I posted on new research that points a bigger finger towards developing Scleroderma for patients with Mixed Connective Tissue Disease.  The funny thing is that, while she has had the sclerodactyl hands and some wrist involvement with the skin on her wristsfor years now, it hasn't really been brought up at all by our current rheumy group.  Until yesterday.  And it wasn't that Dr. S was saying by any means that this is turning; it was more like, "we need to run these specific tests every year so that we catch any disease progression just in case it turns into Scleroderma."  Now, I know that having MCTD puts her at a much higher risk of pulminary fibrosis than almost anyone else, but this is the first time that Scleroderma has been brought up.  So, last night she had a chest CT with contrast, and an EKG.  She had an echocardiogram a little while ago, and she's supposed to be scheduled for another Pulminary Function Test.  It was just surprising.  She did NOT like the echo.  I truly didn't think it would be a big deal, but she said that the ultrasound probes hurt her. She didn't like the contrast for the CT, either.  She spent quite a long time in tears about that, despite my explaining that it was just a dye.  At least they are both over now, done for a year or so.

Leaving for the hospital, I knew that there was something important that I was forgetting.  I knew we had another concern to bring up but I could not remember what it was until after the doctor left.  Her hearing!  Lately we've noticed that her hearing is not that great.  There are many things that she doesn't hear correctly.  I know that, while it's very rare, there are actually joints in the ear that can cause hearing loss.  I believe that it could be the sinus pressure is starting to build once again.  I can't believe that we forgot about that!  I did have a chance to ask the immunologist about it (because he is the one covering for rheumatology today).  He didn't say too much about it because he couldn't see any problems.  But, he does feel that we should schedule a hearing test.  I assumed that would be the case.

The other thing that we were curious about was her current rash.  She's had one like this before.  It starts out with one or two areas that look like mosquito bites, but more keep coming.  They are just red spots.  When she itches a lot, the middle gets a little speck of blood.  They don't respond to Benadryl.  I hadn't even thought to try cortizone on them.  Dr. S agreed that it is likely an autoimmune rash.  He said that often with rashes that are associated with an autoimmune disease that is being treated, they don't look the same as they would in non-treated disease, so it is more difficult to know what to attribute it to.  MCTD'ers are more likely to break out in different types of rashes than people with JA or RA alone.  She's had more vasculitis-type rashes on her face and hands, too.  She gets spots that look like small pink blotches in those areas.  On the bright side, he was showing a medical student what he looks for when looking for dermatomyositis.  He explained that he can't show her much because he sees no active disease!  That made my day!  :)  At onset, she had the speckled capillairies, the pink elbows and knees, more spots on her hands (they didn't look like Groton's Pauples to me, but I guess they were), and she had the classic heliotrope rash around her eyes.  Right now, she looks darn good! 

I am not used to her needing Zofran before Methotrexate yet, and we both forgot about it! So at 1:30 A.M. she was still awake with a sore tummy.  The nurse called the doctor, who added Zofran in.  She was able to sleep after that, at least.  Of course, respiratory came in at 6 to give her Symbicort, along with vitals every 4 hours.  She's tired, and she just wants to go home but she's doing well.  At least now we're in the home stretch.  She's got her Remicade going now; when it is done, we are free to leave.  I had originally thought we would be home by now.  Ah, well.  At least she's got chips and TV.  She's comfy, so it's all good. 

Due to the holiday, I'm not sure when we will have her test results, but I will post more once we have some answers.

Now what? (Cuz' I have NO idea....)

So, to recap for anyone that hasn't kept up with us, in September Emily had the port placed.  In October and November she was inpatient for staph in the port for three weeks.  She was home for about a week when she got the sinus infection.  After trying all of the normal antibiotics, after having her sinuses scraped, then re-suctioned two weeks later, another 31 days on Augmentin, it's back.  We went to our pediatrician on Monday.  She ordered Zithromax, despite my protests.  Our infectious disease doctor at Shands had said that Zithromax doesn't really help sinus infections and it's a waste to try.  So, I had called them to see what else we could do.  They called in a prescription for Ceftin (Cefuroxime) for her.  She had her first dose Monday night.  She was fine that night and Tuesday.  Yesterday I was called to come pick her up from school.  Her stomach was killing her.  So, because I am a pharmacy by now, I had some Zofran to give her.  About a half hour later she vomited.  So, I ran and got the Zithromax anyway.

When I spoke to the ID docs, they had said that really if the Ceftin didn't work then we'd probably have to have a new culture.  That would mean dealing with the ENT's again, but ours doesn't really seem to understand the whole immune suppression thing.  They were under the impression that ten days of antibiotics would be enough and they wouldn't believe the infection was still there until they cultured it again.  So I'm not too thrilled about the idea of talking to them, but ID had really only gotten into this mess because they work so closely with our rheumies.  So what to do?  We have another appointment with our pedi today, but I'm not really expecting much.  Maybe if I just tell people "Ok, her Remicade  wipes out her T-cells AND her Rituxan wipes out her B-cells", maybe they'll understand better?  This is why I really need to become a doctor.  Soooo frustrating! 

In the meantime, we've been tapering her Prednisone down.  Her doctor wanted her down to 3mgs last month, but because her thighs kept hurting we didn't want to jump into it.  We just spaced it out more and tried to "trick" her body into accepting it by doing 3mgs for two days then back up to 3.25 mgs for two days.  We did that for about two weeks.  She seems to be accepting it well.  Her thighs and knees have been stiff and tired, telling me that nothing is under control yet, her ankle has been hurting and she's having back issues.  I think the back issues are from the steroid taper.  Our PT explained that since she went from no curve in her back to too much curve from the steroid belly, her back would be affected when the weight started to drop off.  Even getting better hurts with these damn diseases!!!  Then again, she also doesn't think her Remicade is working.  I hate to mention that to the doctors because we are running out of options.  I believe that our only other option would be Actemra, but knowing so many other kids that were on that and failed it, I don't really consider that a serious option. 

The bright light in all of this is that I told my husband the other night that I WILL be homeschooling them next year.  We will find a way to make it work.  She has missed 57 days of school this school year, mostly due to her infections and hospitalizations.  Because of my work schedule, she knew that she had to go to school unless she was contagious or really just couldn't make it.  She knew that she could call me out of work, but I had to at least try to go to work.  She would have missed a LOT more if I didn't have to work.  So, we're going to sacrifice.  If I can work ten hour days on Saturday and Sunday then we can make it, and they'll be home with me.  Zachary has been begging me to homeschool him for the whole year!  He's doing well, but he is definitely getting sick more often since starting Enbrel.  He's had some headaches but that's about it.

Please, let me know what the heck you would do on the doctor situation!!!  I am lost for once!  Thank you! 

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  :)

How are your kids doing?

Every day I have people ask me how my children are doing.  I truly appreciate this.  It can help me loosen up a little bit, just knowing that someone cares enough to ask!  However, here's the catch:  I never really know day to day.   Emily is the hardest to tell.  She'll complain for a week about a cold sore, but she won't complain about the fact that she can't walk.  That was exactly the case in October 2010 when she was officially diagnosed with JDM.  She'll complain about a scrape, but not because her head hurts from having her sinuses scraped.  She tends to complain more when there is much less pain.  The worse she feels, the less she says.  When you ask her how she is feeling, the automatic response is "Good".  Sometimes we can pick up cues.  Other times we truly are left to guess.

Zach is more vocal right now.  He's much more quick to tell you when something is wrong.  BUT, the worst parts of the disease are what you can't see, so how can I really know for sure?

I have also had several people lately ask me if this could be because of environmental factors, diet, etc.  I will try to make this easy to understand, but it's difficult subject matter, and the scientists aren't 100% sure yet.  Say you have an electrical circuit that is working fine.  Everything is working as intended.  Suddenly, something happens- a trigger is pulled, a lever or switch.  That opens the circuit up, right?  Until that circuit is closed, it won't be right, it will cause problems.  The immune system is the same way.  Here's the problem- the "switch" in this case is invisible.  It leaves no trace.  And you may not  even know that the circuit is open for many years.  Some people have symptoms many, many years before the disease hits.  Once it hits however... Some people are lucky enough to be well managed with just one or two treatments.  Others never seem to be able to find anything that helps.  For a small percentage a significant diet change will help and heal them forever.  Most people find no relief through diet change.  And, if it's an environmental trigger, removing the trigger doesn't help.  We had mold in our wall that went undetected until 3 out of 5 of us got very sick.  We had NO clue that we had mold.  It was hiding up in the rafters of the attic above our kitchen and bathroom.  It was removed, and I know it's gone (because I am extremely sensitive to mold).  That doesn't seem to matter.  Other triggers are bacteria like strep.  Strep and pneumonia can set off autoimmune diseases like RA.  Again, once that trigger is pulled there is no going back.

When I tell people about my kids' situations they often ask me "Are you sure you don't have mold in the house?"  Yes, but even if we did it wouldn't change this either way at this point.  Oh, it may speed it up if we still had mold, but it won't magically reverse.

My kids "good" is different from other people's.  If I don't know how to answer you, please don't think it's anything more than just "I don't know".  As lame as it may sound,  we just don't know.  Some days bring severe fatigue.  Some days bring severe pain.  Other days bring stiffness, and still others bring all of the above.  For my kids, most of the time their pain is lessened.  Em does pretty darn well.  I think it's actually more because she has gotten used to the pain.  Also, remember that a simple cold can become a huge ordeal because their immune systems are suppressed.  This means that, while you & I can fight off a cold or have a simple round of antibiotics "cure" us, this often isn't the case with immune suppressed people.  They fight and fight but it doesn't always work without a LOT of intervention.  This is our life.  We make the best out of it.

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

Would you help if you had the opportunity?

Do you have RA?  Or does your child have JA?  Are you tired of hearing things like "Oh, I have arthritis, too!  In my pinky sometimes", or "Oh yeah, Aleve really helps me", or better yet, "Kids can't get arthritis!  Are you sure that's what's wrong?"  Have you ever wanted to find a way to help but, Arthritis Foundation walks aside, you haven't been able to find a way to help?

I've said recently that it's an exciting time to have arthritis.  People are getting tired of hearing those comments.  People are tired of doctors not understanding.  People are really thinking that Rheumatoid Arthritis should never have been called arthritis.  WE are tired of the stereotypes, the stigma associated with it.  We are demanding change.  Do you want to help?  Here's how. 

 I volunteer with a new non-profit, the International Autoimmune Arthritis Movement. We are recruiting volunteers to help with tasks- all by using your computer.  We are trying to get the phrase "Autoimmune Arthritis" out there.  The first step to coining a phrase is to actually get people to use it!  This will help a lot.  But there are other things, too.  Do you also write an arthritis blog?  You can be a blog leader!  Or at least allow a link to your blog.  Are you great with researching?  There have been opportunities for that.  There are so many things that can be done- all by sitting in your home at your desk, or wherever you are.

Also, right now we are looking for all sorts of pictures for the newest venture.  Pictures of body parts, people (adults and kids) getting infusions or injections, rashes from your autoimmune disease, or anything else that can help to accurately portray the real faces of arthritis. Does this sound interesting?  The first step is to email Tiffany at tiffany@iaamovement.org.  She really asks for very little of your time, but that little bit can make a big difference. 

***Thank you SH for reminding me about the pictures!

A birthday & a new diagnosis...

It's time to change the title of the blog again!  My 9 year old is now an old ten year old lady!  I can't believe it's been ten years.  I feel blessed every day to have these kids.  Today was a good day.  She was very tired from her meds yesterday, so she stayed home today.  I ran her brother to school, ran to the grocery store to pick up her cake, ran back home, and then had to run back out to take my oldest to the doctor.  After a trip to CVS for more meds, we were back home.  She had kept telling me over the past month "I can't wait to go to therapy on my birthday!  Miss L.A. will have to wish me happy birthday!"  She was too tired to go today.  She requested pizza for dinner, so I ran back out for pizza.  We all had a nice night laughing, having a hug war, and just enjoying each other.  I also noticed tonight that her pants are falling down.  Why is this significant?  She is definitely losing a LOT of Pred pounds lately.  She's lost about 10 steroid pounds in the past couple of months.  The only way that we can tell is by looking at how her clothes hang on her.  Shirts that we bought last November that she was popping out of by the end of that month are now looking more like dresses.  I know that it's not going as quickly as she'd like, but there is true progress.

So, we had appointments yesterday.  She has done pretty well without an NSAID over the past two months.  She has had some days with a back ache, or knee pain, or a bad elbow day, but overall she's done very well.  Well enough that she didn't want to try another NSAID.  Works for me  :)  However, she did notice that she has 2 new bumps- one on each hand.  She told me that they were rheumatoid nodules. (There's a switch!  LOL!)  We remembered to ask the doctor yesterday and he confirmed it.  All of us are pretty surprised.  She hasn't had any nodules since she started Enbrel in late 2008.  They seemed to only pop up when her JA was active, and right now it's actually been pretty quiet.  Well, maybe not as quiet as we thought.  Where the past few months have showed low inflammatory markers, yesterday showed that her SED Rate  is creeping up.  The ranges for kids vary, but the range our hospital uses shows the normal range ends at 20.  Her SED was 22 yesterday.  No, not significant, not the 39 that it was last October when she was diagnosed with JDM, or the 79 that it was at one point last year, but significant enough that we'll need to keep a close eye out for more symptoms.  I really don't want to take her off of Remicade.  I don't want to have to make another change.  This combo seemed to be working so well!  I'm not going to panic.  We'll just watch for now.  He felt that her ankle was warm, and her Raynaud's is getting a little worse again, but otherwise she is doing well.

And then there's my son.  People that know me well will tell you that I have little patience for drama.  I try to be as realistic as possible.  I hope and pray for the best, but I expect the worst in a realistic fashion.  I have excellent intuition.  There are many things that I know, though I couldn't explain how or why & it probably wouldn't make sense, anyway.  I just know.  I have always known that the idea of my oldest having arthritis is preposterous.  It would make as much sense to worry about her having arthritis as it would worrying about my little people running away to join the circus.  But my son.... I've been waiting for it.  I've held my breath hoping that I would be wrong, maybe just paranoid because pretty much every ounce of my spare time has some sort of arthritis involvement.  But I knew that one day he would be diagnosed.  Yesterday was that day. 

A little background.  Em was diagnosed with JA in January 2008.  By May 2008 Zachary had developed psoriasis.  Of course, "kids don't get psoriasis" was what our first dermatologist claimed, even after we had him scratch tested for allergies and the allergist wrote a note saying it had to be psoriasis.  This guy claimed it was impetego, a fungal infection, ringworm, eczema, a yeast infection... everything but psoriasis.  We switched dermatologists after we did some reading up, and realized that it was psoriasis.  He had a classic case.  It started by taking over his ear, then it moved to his head, forehead, cheeks, chin, and eyelids and eventually everywhere.  We have never been able to gain any control over it.  Not really, anyway.  He did have a short period of time that he was mostly clear, but then it came back with a vengeance.  I'm not good at guesstimating, but if I had to, I'd say he has about 70% coverage right now.  It's bad.  It's not comfortable.  It's very visible.  It's very out of control.  Aside from the vat of oily, greasy Aquaphor, nothing helps.  So, I read.  I look for things.  I know what to look for.  From the MCTD, Emily has what they call "sclerodactyl" hands.  I have read that people with PsA get the "dactyl" hands.  Well, I took a shot in the dark and figured out that the two were probably pretty close.  I figured that Em's was different mainly because of mild scleroderma features, which is what makes her fingers look tight and shiny.  Take away the scleroderma part of that and... well, you know where I'm going with this.  Of course, right now hers still look like overstuffed grapes that are going to explode any second, but that's also from the steroid swelling.  Take that away, and I knew that his hands look dactyl.  That bothered me.  I've watched his nails turn yellow, pit, look horrible.  Those are signs of PsA.  He's had heel pain- a sign of Spondylitis, the type of arthritis most often associated with PsA.  I begged his pedi's to test him back in 2009.  Everything was negative, but I was sure it was wrong.  I was totally going to enjoy him not having any pain, but I knew that it was just a matter of time.  So, this past August when he came to tell me that his jaw hurt and was clicking, my heart stopped.  Again, I just knew.  I hoped I was wrong.  I hoped it was TMJ.  But I knew it wasn't.  Of course, Kevin was still unemployed then, so when our dentist wanted $100 for a panoramic x-ray, I wasn't thrilled.  I also knew that arthritis would likely not be picked up on a panoramic.  Generally they run MRI's.  I knew that I had to get him in to our rheumy's.  I took advantage of one of our docs volunteering at our JA Family camp.  I asked her to look at him.  She agreed that he needed to be seen.  I then set about trying to get our pedi's to run those same labs I asked for in 2009, but with an ANA and an HLA (spondy) series thrown in with a CRP & ESR/ SED rate.  Thankfully, they love us and they know that we are not trying to scam or hallucinate problems.  While not being seen as early as I wanted him to be since Emily was stuck inpatient while he was supposed to have his appointment, I finally got Zachary in yesterday.

We saw the new doctor.  He isn't really new to me; we saw him more the time that Emily was inpatient than anyone else.  We really grew to like him and his wife that week.  He was originally thinking about ordering the MRI for his jaw, but he can feel the arthritis in there.  He also said that it would be very unusual for him to NOT have something more with as much psoriasis coverage as he has.  He was intrigued by his fingers, too.  He saw the dactyl look of them right away, and noted that they are all tight.  I'm not nearly as fazed as I probably should be.  Maybe I'm just in shock, but I think it's really because I was that certain that he would one day be diagnosed.  I've had so many reasons that I've just tucked away up in a corner of my brain, waiting for more puzzle pieces to fall into place.  If anything, I'm relieved.  No, I certainly don't want him to have arthritis, but I do understand that these things are much easier to control the earlier you start trying.  I have seen kids that took so long to get diagnosed that they can't get under good disease control.  I wasn't about to let that happen.  And that is why I'm relieved.  We're just waiting on our Enbrel prescription to work its way through our insurance.  I've already picked up his Methotrexate.  He'll have his first dose on Friday night.  We're starting him easy- he'll be on the pills, mostly only because Enbrel works better with MTX.  Hopefully this will be what he needs to help his jaw and calm his skin down.  It's so bad that, when he gets up from my desk after using my computer for a while, there's dead skin all over my chair, desk and keyboard.  How can that be comfortable???   So, we keep breathing.  One day at a time...