Its been a long while since I have posted. My DS12 has the Gtube, refuses to eat, also Immune Deficient. Has been battling PANDAS for many years. I just wanted to give other families a glimmer of hope. My son was on high doses if Clindamycin prior to starting HdIvIg in July. It was not working. After 6 months of Ivig, my Jt is motor Tic free! Coprolalia hasn't left yet. Darn. He is happy, playful, sarcastic! Able to do schoolwork. The fog has lifted. The most important part, he is eating!! For the first time, in 2 years! Has maintained his weight with no tube feeds over the last month.
This is a miracle. He has grown several inches, now taller than me, and stronger.
For all the parents out there struggling, I was there, I still am. I have a daughter that was diagnosed 6 months ago, that has been sick for over a year now. THERE IS HOPE!! YOUR CHILD WILL BEAT THIS!! Ivig for him was a "abx are no longer, lets see if this does" option. For all the naysayers out there, IvIg is a viable treatment option, it saved my child! A year ago, he tried to kill himself....in a few days, he will be opening Christmas presents with a joy this year, instead of rage. I would like to wish everyone a Merry Christmas. A special thank you to DrT for pointing us in the right direction. And our special Angel on Earth Dr Carl Barr, in Orlando, without you, we would be lost.