18 months ago, Cooper went through about a 3 month period where he was in extreme pain. Whether it was walking, going on the stairs, or playing, it hurt to move. He spent a great deal of his day crying in pain just wanting to snuggle up on the couch. During that time we saw a variety of doctors, but still found no answers.
Cooper is having another one of those flare ups. It's been going on for a couple of months now. This time we saw a Rheumatologist. She has diagnosed him with Lupus. I went to her because I was told by other doctors that she has the ability to think outside the box. This certainly is an outside of the box diagnosis.
Lupus means you have an over-active immune system that is making antibodies to attack healthy tissue, causing pain and joint inflammation in Cooper's case.
Lupus is not a disease affiliated with Sanfilippo. Apparenty, Lupus typically occurs in women and even early onset is late teens and 20's. Not a 5-year old little boy. The cause is not known, however it has been said by the geneticist that the transplant really affects your immune-system. Hmmm. There is the one thing that sets Cooper apart from others. Could it be the one thing we did in hopes of helping Cooper has in turn caused another disease? Like having Sanfilippo isn't enough?
I know many other Sanfilippo kids that have been transplanted have had 'Lupus-like symptoms', but not diagnosed with Lupus. Perhaps other doctors never checked for Lupus because it seemed inconceivable. Check.
Cooper is not tolerating one of the medications well. We are looking into our options. Aside from the inflammation, I want to treat the pain. It is absolutely heartbreaking seeing your child in such constant agony, walking around like an 80-year old man, and crying.
Please keep Cooper in your prayers. We are to take a special trip to Disney in a few weeks and really want Cooper feeling like his old self and enjoying every minute.
