tics worse since IVIG

[anonymous0121]

Hi all, my son finally got IVIG (40 G so just over 800 mg/kg) a few weeks ago and his tics are way worse. I know it has been a rough full moon too so that might be it but it is so aweful for him, he has had explosive barking/girgling noises for 10 months now and they get worse with the moon but now it is pretty much non stop... immunologist approve to go up to 45 G but he doesn't have knowledge of the HD or PANS. Anyone know where I can find the presentation materials from the last conference and some research. The tics are stressing him so bad his rages are worse too, he is miserable.

 

anyone have suggestions on what infections to test and treat for for these tics?

 

deborah

[JoyBop]

http://www.nepandasparents.com/resourcesandnews.html

[airial95]

I know of another family (not on these forums) whose daughter got much worse with LD IVIG. Once she started HD again, she has improved significantly. HD is considered 1.5-2.0g/kg

[Cleopatra]

Hi that's my dd. She got way worse as a result of LD ivig. It gave her very bad compulsions where there were none before. And I do mean gave. LD activated her immune system in a bad way whereas HD overwhelmed her own antibodies and washed them out, overcame them in a good way. **some extreme problems began within hours of LD ivig. They remain after 6 months but hd is decreasing them.