Jump to content
ACN Latitudes Forums

There is HOPE


Recommended Posts

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.

Link to comment
Share on other sites

I am so happy for your DS12 and your family, I am so sorry your dd is now battling the monster. I too have a DS12, it's been just over a year of ...well, you know. My boy has had IVIg 3 times, the first time in July but he was Strep A positive, so we don't count that one, HD IVIg again at the end of Aug and again the end of Sept. I have seen some slowing down of the Exorcist Syndrome and lessoning in severity of tics, but he's still miserable. How often is/was your boy getting infusions? We were going to go again last week but he HATES it so much and he's so severly depressed we decided to wait until January so he could have some enjoyment at Christmas. Did your boy feel worse or did any of his symptoms get worse after IVig?

Thank you so much for the positive words, they are so important to hear~Happy Holidays

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Create New...