So, when I say Daniel began to improve within 24 hours of being on treatment, what I meant by that is clinically he began to get better, he was placed on a daily dose of a protein injection known as anakinra to treat his unknown auto inflammatory disorder. The doctors confirmed that he does in fact have an auto inflammatory disorder just WHICH one they weren’t sure of, the anakinra injection helped with his fever, juvenile rheumatoid arthritis, and rash.
Within 24 hours the fever he had fought for 32 days was now gone. They also started him on a large pulse of steroids to treat the impending MAS, and tracked his blood work daily. They were thrilled to see the numbers steadily decrease. To put it in perspective the inflammatory markers in a normal persons blood (so for you or I) looks like the #60, Daniel’s inflammatory markers at the time of the MAS was #15,000. Like I previously mentioned getting ahead of this syndrome is often times difficult, and we know that being covered in constant prayer and the skill of Dr Schneider and his team was an incredible blessing to us and Daniel.
Our little boy was pulling through, and by the Grace of God it looked like we might get to eventually go home, we had, and still have, a long road ahead of us but to be able to feel somewhat normal and sleep in our own beds would be a real gift.
Dr. Schneider explained that the confirmed auto inflammatory disorder would mean that Daniel would need to be on the anakinra for the rest of his life. There are two things about this that made it somewhat complicated.
- Will and I would need to learn how to give injections to Daniel
- We needed to pray it would be covered by our health insurance benefits!!
The thing about anakinra is that it works great and is not harmful to Daniel in anyway, it really is just a protein that our body naturally makes that because of his genetic mutation his body does not make. So if given this injection he is no different than any other normal kid. Even if for some crazy weird instance Will or I or anyone else for some reason accidentally got injected by it, it would do nothing – have no side effects, since its just a natural substance our bodies already create. So it is harmless to us, and life saving for Daniel.
However, (and everyone remembers from English class that’s just a fancy word for BUT) because auto inflammatory disorder is rare, meaning there are approximately about 4 million confirmed cases in the world, and CAPS disease has approximately 1 in a million cases confirmed – referenced nomidalliance.org (auto inflammatory alliance) – and even less for children, anakinra has been FDA approved but not Health Canada approved, yet! And the dosage is not set for children either.
The doctors explained that Daniel’s dose costs approximately $70 per day!
Every day for the rest of his life.
Will and I are so thankful that God put us in the jobs that he did both at Western University and Compassion Canada that provide full coverage health plans, but we still needed to wait for approval as to whether or not this would be covered or not. The doctors at Sick kids did not want to discharge Daniel without knowing this medication would be covered.
This was and IS another big prayer request.
The doctors intended for us to stay at Sick Kids for as long as need be for us to get coverage for this medication as Daniel’s life was in danger without it. The nurses at Sick Kids worked diligently with us to teach us how to properly give Daniel the injection. And we waited patiently after filling out a lot of paperwork to hear if his medication would be approved.
In the meantime Daniel also continued on the steroids for the MAS, and we began to face the side effects of those steroids. For anyone who is familiar with steroids, you will know that side effects of this medication can mean restless sleep (or complete inability to sleep) constant feelings of hunger, weight gain and water retention, roid rage and more. In our case these are the most common side effects in Daniel. With out the steroids he was at risk of organ failure and potentially death, but on them he was transformed into this angry Jekyl and Hyde like character, constantly hungry, angry and exhausted. It really was choosing a lesser of two evils.
Doctors began to refer to Daniel’s steroid self as Dexter (yes, like the serial killer) because of the crazy look in his eyes he would get in a fit of rage. But the steroids were working and we were successfully battling the MAS!
After what felt like an eternity we were contacted by the insurance companies the first company (coverage through Will’s work) was denied, our doctors worked diligently with us to resubmit our claim, but we couldn’t help but feel somewhat discouraged. But the second company (through my work) was approved with conditions…
We were approved for coverage until July but than our claims would need to be resubmitted. We were thrilled, and so thankful this could mean we might get to go home.