Sunday, April 7, 2013

HOME with Happiness in Our Hearts

Ever since Parker’s last hospital stay, his health has been a struggle.  We literally had to call him in sick to hospital/homebound teleclasses for the last month.  Thank goodness they were able to freeze his grades.  For the pass month, he has complained that his bones hurt and it feels like they are going to break and he has slept the days away.  We could barely wake him to take meds and eat.

We kept thinking he would bounce back because we would give him the rilonacept shot each week and he would be a bit better for a day or two…but then it would just continue to get worse and worse.  He was taking daily Epson baths and crawling back into bed.  He wasn’t even up for playing his Xbox (this is huge).
We kept trying to encourage him to get up and succeeded a few times only to see him make it to the couch and fall asleep again.  As I expressed to his doctors, this was really starting to concern me.  As I got to thinking (sometimes thinking is dangerous), I realized that it had been 9 months since he started rilonacept and I began to fear the worst…another biologic failing.  All other biologics that we had tried failed between 6 and 9 months.  And the last time he was on the verge of MAS (macrophage activation syndrome – a very dangerous complication that some kids with systemic on-set JA get), he acted similar.  So as a mom and dad, we were quite concerned about how he was presenting and behaving.  So of course, I contacted his primary pediatric rheumatologist and we were advised to come to the hospital. 

They did blood work, an MRI of his hips/groin, and meds were started.  That first night, I did lots of thinking (this time, not so dangerous…).  I realized that he has gotten worse since adding one of his two newest meds, prograf and baclofen.  So, the next day I asked if flushing and being extremely lethargic were side effects of either of his new meds.  Yes!  Prograf causes flushing and the baclofen could cause lethargy.  Then, while reviewing his labs and MRI results, we got marvelous news.  Our prayers had been answered…the rilonacept and hizentra are definitely working.  All his lab numbers look better…way better and his hips also looked good.  The meds are doing what we had hoped and are stopping this darn JA from progressing!  After further discussion, we also realized that Parker could not handle the baclofen at the dose he was at and also it shouldn’t be given with one of his other meds, which we have since discontinued.  We are already seeing a huge difference.  His is AWAKE, interacting, playing, and chitter chattering up a storm.
His doc also told us that she is re-checking his vitamin D.  Those results should come in tomorrow.  When children have extreme D deficiency it can literally feel like their bones are going to break.  So if that is the case, we simply need to increase his D.  Another great solution!  We are so happy to be home and to see our Parker looking better and feeling more alert.

Now we can focus on getting him better and better, getting back on track with school, having some fun and getting ready for the upcoming walk!  Thank you to all of you who continue to cheer Parker on and who send us positive vibes, prayers, and a giggle from time to time.  We are so fortunate to be surrounded by love.


  1. Yeah! Best news that I heard all day! I am so thrilled that you got GOOD news, and that you solved the mystery! Doesn't it make you feel like, "oh! how did I not think about that?" But of course, we're not doctors.... Anyway, I am so glad that for once it was a simple solution. I will be thinking about you guys for the Vitamin D (and always just because :)

  2. I am so glad to hear such wonderful news! I am so sorry I haven't gotten back to you. I feel like I fell off the planet for a bit. I don't know where all those days even went! I am here tho for you always. I am reading what you post everyday and always praying. All of our prayers worked I guess! I am glad that the medication combo is working for him...finally! I will chat with you this week about everything. I promise. I want to be around more for you. Blessings and CONTINUED Healing, Dana

  3. THANK YOU GOD ! GO Prograf ! GOD BLESS PARKER ! I Know you will be better,very soonnnnn
    everybody send a lot of POSSITIVE wishes and prayers to your way !and your Dear Family ! Thanks for the GOOD NEWS!I love u guys Coach Liz