Roller coaster post IVIG

[sebrown1126]

Our son had IVIG five weeks ago. After a rough week days initially, we've had a really great month. He was exposed to strep about a week ago, and now is regressing. It's hard to know if the regression is part of the post IVIG roller coaster others have experienced, or a problem related to the strep exposure.

 

We are doing ABX and have stepped it up a bit. Here are my questions:

 

Could we have "ruined" the IVIG benefits by being exposed to strep?

 

What do we do to get past these post IVIG regressions? It would be easier to cope if we understood why. It just doesn't make sense. Why a couple good weeks and then downhill again? Does the herxing coming in waves?

 

Any guidance appreciated. We are really hoping that the IVIG we fought insurance for wasn't all for nothing. Thanks.

[lmkmip67]

I can so understand your frustration. My son had IVIG about 6 weeks ago and we have seen NO improvement. He is actually worse.I am not sure if this is still part of the "herxing" or what. But hope is waning fast. I know we have had srep going around out school, too. But Dr. B said he was fine to go on with his regular activities. we are on antibiotics too, but so far have seen no improvement, and he has developed tics where he wasn't even ticing before. Your not alone in wondering, let me tell you! I hope both of our children improve soon!

[SSS]

Our son had IVIG five weeks ago. After a rough week days initially, we've had a really great month. He was exposed to strep about a week ago, and now is regressing. It's hard to know if the regression is part of the post IVIG roller coaster others have experienced, or a problem related to the strep exposure.

 

We are doing ABX and have stepped it up a bit. Here are my questions:

 

Could we have "ruined" the IVIG benefits by being exposed to strep?

 

What do we do to get past these post IVIG regressions? It would be easier to cope if we understood why. It just doesn't make sense. Why a couple good weeks and then downhill again? Does the herxing coming in waves?

 

Any guidance appreciated. We are really hoping that the IVIG we fought insurance for wasn't all for nothing. Thanks.

 

 

This happened to us: 1st HD-IVIG, the first few weeks were really hard! Then she settled, it seemed, and around week 5, while on daily Azith., 4-7 kids in her K class dropped out/came down with strep. I kept her going, because she seemed to be doing great, we were on the antibx., at the end of the week, bam! it seemed all things pandas were back, even though she did not get the actual strep infection- just being around it kicked up the autoimmune part, apparently. Panicked, not knowing if she would ever pull out again, I scheduled another HD-IVIG (patience I lack) and right before we went, she DID start to pull out.

Anyway, we did the 2nd (and last, looks like) IVIG, and while we have had some bumpy weeks, overall, much better. And, I pulled her from school for the last 5 weeks. I am learning as we go, she does pull back out- and the 'bumps' are shorter lived. Really, I have no choice but to wait it out, keep her on the antibiotics, try to keep the stress down...

[butterflymom]

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Edited October 8, 2015 by tampicc