Monday, January 30, 2017
So much has happened and yet it feels a little like time stands still. Since Thanksgiving, Parker has been struggling. Even with his multiple nerve ablations, he still has much lower back pain. In addition, he is incredibly fatigued. He did repeat MRIs and unfortunately, since March, this darn JA has progressed even more. He officially received an additional diagnosis in November of Anklyosing Spondylitis (AS). The doctor is very concerned that while we have been treating his systemic JA, the AS has progressed. So she started talking about a change in treatment. Of course, any time there are med changes it is scary.
In the meantime, 2 labs were not too good. Prograf (anti-organ rejection drug) has been working really well for the past 3 years, but now it is affecting his kidney. So, we had to stop it. He is now on otezla and they have seen some kids with psoriatic features do well on this. So we are giving it a try. In addition, his immunoglobulins were low, even with the IVIG he gets monthly (infusion of blood plasma). So they increased the amount. We are hoping this helps boost his immune system.
Then in December, Parker had blood and mucus in his stools. And we had an appendicitis scare, that was actually swollen stomach lymph nodes. This has happened before. For some reason, the systemic JA tends to attack his lymph nodes. In addition, the lymph nodes in his neck have been large. We did an ultra sound and it was confirmed. There was also concern about his thyroid, but that looked ok on the ultra sound. Endocrine is now running thyroid labs and glucose labs (because those were elevated last round).
So, in early January, Parker saw a GI specialist who immediately did a scope. The scope came back good with no explanation for the blood. The only issue was his esophigils were elevated, which may mean that his body is responding to the corn he has been eating. Allergist cleared him as no longer being allergic to corn, but now those labs have been added to his list of tests. It might be an intolerance response. Although inflammatory bowel diseases did not come up on the scope, we are going to keep an eye on this because he is at risk with all his issues.
Finally, we thankfully got approval for the new biologic, cosentyx, which is going to target this AS issues. We are hoping that it will somehow help his systemic JA as we don’t know if it will or not. It is an IL-17 drug…for those of you who are wondering. It looks like he may have to stop Ilaris which has been keeping his systemic internal organ issues with his heart and lungs, fairly quiet.
So all of this has been going on while I had an MS scare. After 3 docs said I could have MS I went through a series of tests and I don’t. Thank God! They believe that I have been experiencing something called Hoshimotos encephalopathy. In addition, I was on B12 injections from when my Graves disease was active, and now I am in Hoshimotos mode. My body had too much B12 and that is not good. Since stopping it, some of my symptoms are much better. My thyroid has not been nice and neither has my own RA. So if I have not gotten back to you…all of this is why. I so apologize. I am working on removing as much stress as possible for myself and inserting as much JOY as possible for Parker and our family. Love you all and thank each of you for never giving up on us.