2 month IVIG update

[pmoreno]

It has been 2 months since Gaby's IVIG and although the first 2 weeks were awesome (with 80% remission of symptoms), I have to say that she has now been in a holding pattern for the last month or more with behaviors that are not as bad as her first episode last year, but a little worse than what she was having just before the IVIG. I am not seeing these periodic episodes that are supposed to be like "turning back the pages", but rather consistent behavior that is spacey, difficulty concentrating, following simple directions, very poor memory, inability to perform academically close to her age level, talking to herself, occasional outbursts of anger or paranoia, continued waking periods at night. She has been on augmentin prophylactically since IVIG, but I think we'll switch to zith this weekend - her ASO titers were 311 (with a normal ref. range of o-250) just a little less than she had about 3 or 4 months ago. Not sure if its strep exposure that's keeping these symptoms around or just that IVIG was not really effective for her. I've heard some people say that even with the higher doses, you get good relief for short periods only (since IVIG has a half-life of only 30 days). Although, Dr. K does seem to think that this is a long road back to recovery and eventually (maybe within a year) we will see everything clear up. I hope so, but am not terribly optimistic at this point. I was really expecting that things would slowly, but steadily improve, with just a few bumps in the road here or there. I am going to try the zith with her, even though some people have posted on here that they've had good luck with it in the beginning and then with exposure the symptoms seem to come through again. The thing is, she really hasn't been sick since August when she had a mild upper resp. infect. that preceded the PANDAS symptoms coming back. Since then - not even a sniffle - not an allery - nothing.

 

The other thing that I will try probably within the next week or so is the kavinace, which I've heard so much about and which really makes a lot of sense. I know that it won't actually fix the problem with the immune system, but if it will at least balance the neurotransmitters, it should decrease anxiety and that's half the battle.

[Worried_Dad]

Hi, y'all:

 

Our son (12) had IVIG at the same time as Pat's daughter there in Chicago with Dr. K. Overall, things are much better than they were before IVIG... but he was in the worst shape ever at that point. I'd say we're about 60% back to where he was before this whole nightmare started.

 

In the past 2 weeks, though, progress has slowed to a crawl, and things have regressed in a few areas. The OCD contamination fears are still pretty severe, and this really interferes with "normal" activities. More worrying, he developed a brand-new symptom - a shrill, high-pitched, Tourette's style bark that has evolved into a screech - that showed up 2 weeks ago and hasn't gone away. These are the biggest problems for him right now as we try to get him back to school for the 1st time in a year and a half.

 

On the positive side: anorexia is completely gone and he's eating like a horse now. No more violent emotional outbursts or crying jags. No more suicidal talk. His general mood and attitude are much improved, and he smiles, laughs, and jokes more than he has in a very long time.

 

So, for our son, the IVIG has made a big difference... but we haven't come as far, as fast as we had hoped based on Dr. K's initial expectations.

 

Diana has shared some post-IVIG success stories with us where it took 6-12 months for kids to fully recover, so we're trying to stay positive. But, sometimes, that's really hard. Seems like we've been "waiting for recovery" forever (counting the pre-IVIG months that dragged on and on).

 

Hope to share better news someday soon. That would be the best Christmas gift ever!!!