Regression with multiple IVIG's

[LaurenK]

Anyone done well with the first couple IVIG's and later during treatment after the 3rd or 4th, had a regression?

[T_Anna]

I would be curious about this too as we are planning to do another IVIG this week to help boost DS's immune system post-PEX. We are still waiting for big improvements, but have seen som mood improvements and appetite too so we're still waiting.

 

Thanks for any responses.

 

T.Anna

DS15

 

Diagnosed 11/2012 trigger strep with co-infections mycoP, coxsackie

Taken Augmentin, Doxcycline,Azithromycin, Valtrex, Clindomycin, Diflucan, etc.

IVIG 2/13 & 3/13

PEX 7/30-8/3

[NancyD]

I would put my DD in this category. She did well with initial IVIg infusion at 1.5 g/kg but then did poorly with subsequent lower dose monthly infusions (ranging from .4 g/kg to 1 g/kg. This was 5 years ago. In hindsight, I wish we had done one infusion and left it at that, perhaps do another HD infusion 6 months or a year later.

 

In 2010 we tried 2 more HD infusions (one 30 days after the other) but they did not help at all. Shortly thereafter we discovered DD had other underlying infections that needed to be treated (MycoP, Lyme, Bart, etc.) plus she was homozygous for MTHFR. I have no regrets about doing IVIg as it gave us a solid year in remission. Plus (and this was a BIG plus), it completely eliminated DD's vocal and motor tics and they NEVER ever came back. It's been 4 years since she's had any tics. Wish I could say the same about her anxiety/OCD as that only got progressively worse. Treatments are so individual!

[LaurenK]

Nancy, I was reading your previous posts, but I'm curious, did you do the .4g before the 1 gram. You had told me that 1 gram made her worse, but I'm reading that this is still considered a relatively high dose. Could it be the .4 just aggravated things and the 1 didn't help? Did the very first IVIG help her OCD at all?

[NancyD]

She did 1.5 first, followed by several monthly infusions at .4, .75, and 1 (jn that order). We were not able to recapture the initial success we had at 1.5 until we went back a year later and did another infusion at 1.5. I can only speculate that .4 might have aggravated her and 1 did not help.

 

None of the infusions ever helped her anxiety/OCD. In fact, they made it worse. I believe her anxiety/OCD may have been caused by Bart, but we are still treating that so I can't say for sure. Interestingly enough though, we were told by Dr. K...at her age (12 at the time of her first infusion) not to expect IVIg to help her tics since they were the most difficult to eradicate. Yet was what we had the most success with.

 

Nancy, I was reading your previous posts, but I'm curious, did you do the .4g before the 1 gram. You had told me that 1 gram made her worse, but I'm reading that this is still considered a relatively high dose. Could it be the .4 just aggravated things and the 1 didn't help? Did the very first IVIG help her OCD at all?

[LaurenK]

Thanks Nancy, I think that is a very important detail.