More IVIG questions

[Joan Pandas Mom]

Buster, I'm so sorry to hear that. I know quite a few have done 2 or 3 IVIG's. Do you think you will do another one? We are having our first one Mid May. My son is suffering so bad right now.

 

Hi Joan Pandas Mom,

 

are you saying your daughter is back to where she was before the IVIG?

 

Yes, after 6 months of no symptoms post IVIG, our daughter got sick again with a fever of 102. We do not think it was GABHS but it is difficult to tell. After the fever, symptoms reemerged following our classic exacerbation pattern of escalation for 2 weeks, plateau for 1 week and fall off for 3 weeks. Unfortunately, her remission was not complete post-illness and held steady at the pre-IVIG baseline. We tried increasing azith and had improvement in mood, but vocal tic, handwriting abnormalities, measurement rituals and eating restriction were now part of her new baseline. We tried a prednisone burst and saw some improvement but these were not sustained post-prednisone.

 

I'm sorry to post this news but wanted folks to know.

 

Do you feel the IVIG was helpful?

Absolutely we had 6 months of calm and had our daughter back. We really thought we were done -- frankly this is why I started writing everything up (PANDAS FACT sheet, FAQ post, research summaries, ...) because I thought we were putting this behind us.

 

IVIG was incredibly beneficial -- but (at least in our case) a new infection seems to have retriggered the same reaction.

 

Buster

[Tenacity]

Buster --

 

Like Joan, I wonder what you plan to do next. Will you take your daughter for another IVIG treatment?

 

Tenacity

[Tenacity]

Just reposting this question at the end of the thread, in case it got lost in the middle...

 

Buster -- Have you and your wife decided what to do next to try to help your daughter, since the benefits of IVIG were undone by another illness? Will you take her for a second round of IVIG?

 

Tenacity