7 weeks post ivig

[Jaal]

Ds7 is 7 weeks post ivig.

Interesting pattern...1st week he was actually very good....the following 3 weeks very bad (tics, behavior, sensory).

The last few weeks he is only exhibiting symptoms he had when he was 4-5 years old (lots of sensory and OCD, no tics or fire (our name for excess energy and movement).

 

I have read some posts that said Dr. K refers to this as peeling back the layers.

 

Has anyone else experienced this or read about it?

[nicklemama]

Yes we've experienced this.....twice. It's a typical post IVIG reaction for my son. Slowly, the symptoms/behaviors fade away.

[norcalmom]

In Brain on Fire, a book about a young woman with NMDA encephalitis ( where rouge antibodies to a specific receptor on neuronal tissue get through the BBB and attack the brain- usually after an illness and sometimes assiciared with ovarian cancer) the doctor and author describe "getting better in reverse order if symptoms".

 

I like Dr Ks - turning back the pages annalogy better!

And- this disorder is also treated with IVIG. Many similarities to pandas.

[Mary M]

This was very much our experience. It can be painful to relive the symptoms...however, it is reassuring to know that the IVIg is working.