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.
