Hi Judy, Shelley & everyone else......yes, it has been awhile since I posted. I do email Shelley occasionally and she tells me to write the group, but I never get around to it.
Gareth had a horrible first part of 2014....not Sclero related, though. He went into anaphylactic shock last Dec, while getting his monthly IV Ig. Last BP yelled by the nurse was 48/24. Thank goodness he was in the Med/Surgical unit!! Anyway, they didn't believe it was from the IV Ig, since it is a human/natural product, and they tried again in Jan. Again, his BP started to nosedive. They stopped the infusions and, by April, he was on constant antibiotics from ear/sinus/lung infections. He's immune deficient in IgG 2/4 they fight bacterial infections. Anyway, by July they are doing Mastoid surgery, 2nd time, and they find he's got a nickel size hole eaten from the Mastoid process into the brain all due to an infectious cyst. I didn't know infection can eat through bone.
In Aug, they sent him to an Infectious control doctor who tried another IV Ig/steroid/benadryll concoction. He has tolerated that for two months. Tomorrow will be his third time with this concoction. Now that he's back on the infusions, he's healthy. You've got to love modern medicine!!
I do read the forums....just never reply. You guys are all a great source of information. Wouldn't know what to do without your insights.
Take care, Everyone.
Mom to Gareth, 26 years old, DS/ASD