IVIG

[Guest pandas16]

I was wondering why some kids have a bad reaction/turning of the pages to IVIG? I know I read that the lower dosages often cause more problems because they do not "shut off" the immune system. However, if you have a bad reaction to the higher dosage what does that mean? Do people only have a bad reaction if they in fact have a "co-infection"?

[dcmom]

This is a question I would love to know the answer to. I am not sure that there is one answer.... This worse before better issue has held me back from seeking IVIG for my kids.

I have been reading a bit about MS treatments lately, and many MS docs seem to give IV steroid with the IVIG- I wonder if this could help our kids avoid a flare up?

[EAMom]

I was wondering why some kids have a bad reaction/turning of the pages to IVIG? I know I read that the lower dosages often cause more problems because they do not "shut off" the immune system. However, if you have a bad reaction to the higher dosage what does that mean? Do people only have a bad reaction if they in fact have a "co-infection"?

 

For some reason, I vaguely remember someone saying (Dr. K.?) said those kids that had more "turning back the pages" actually reponded better to IVIG in the long run. (I don't know if there is any real proof of this.) But, I wouldn't be discouraged by a temporary "bad reaction"/"turning back the pages".

[Phasmid]

I only know that our doc said the side effects are very common. As far as a "turning back of pages" (coined by Dr. K?), where the present or recent symptoms get worse or come back briefly, I don't understand. I don't think anyone really has a good grasp of this, because the way that IVIG helps PANDAS isn't fully understood yet. However, we did see this in our case just this month. Son's low dose IVIG was on Jan. 6. His symptoms that were present, the most disturbing ones, all of a sudden got much worse at one week post infusion! Nothing catastrophic, but disturbing. This lasted for about one week. Then, suddenly, as if a switch was flipped, it all stopped! It was almost ridiculous and made me think I was losing my mind! But now, three weeks after infusion, he's fine! This was the classic situation that I have read explained by Dr. K. Honestly, I didn't before believe a word of it! It's crazy stuff!