LaurenK

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We are in our 9th week post IVIG and things look good!!! OF these 9 weeks, my ds only had 5 bad days. Which mostly happened during week 7 or so....As of this moment, my ds has gone 14 straight days of NO Panda's symptoms AT ALL. One thing I did not expect to happen so fast was recover of short term memory. This has been a rather, "WHAT!", kind of moment for me. I have always just sort of thought of my son as a kindred "space cadet". But sure enough, recently he is remembering where he has put his things, able to better account for his day at camp, things like that...very interesting. The only thing that still is hanging around a bit is some bedwetting. However, I think at this point since it has gone on for so long now, his brain/body is no longer trained to wake-up. So I am going to buy him an alarm clock....if this is all we ever have to be concerned about...YIPEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 
Anyway, I just wanted to share our experience so far with you all, since I know when I was researching I was very interested in any info I could get about IVIG experiences..
 
Thoughts and Prayers for all....

Not a bad review of mycoplasma and it's extra-plumonary complications and autoimmune implications. Use of steroids, immunotherapies, etc reviewed.
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-0691.2007.01834.x/full

Thorne Vitamin E is a huge help to me. There's actually a drug that's in clinical trials for tourettes that is based from vitamin E. I read about it not that long ago. I only take that and CoQ10 and I'm good.

Ibuprofen around the clock for 4 days prevents a major downfall for me.. also large doses of daily probiotics have helped with re activity and IVIG.

Laurenk,
Did dr.give you any idea why you mave have relapsed? Does he consider it a relapse or something news?
I am curious, as my daughter has had strong positive response to pex and steroids, yet relapsed again this spring. she began to improve at 3 months post IVIG & still has some problems but generally is better. I do feel like she is walking a tightrope between major spiral down and normalcy. my other daughter is now about 2 years after her last treatment( pex and ivig) & is 100% better.
just curious if you've gained any insight from Dr N about relapse.

Hi Surfmom,
 
Can elaborate a little bit more on the condition that your daughter has? Does she only have PANDAS? Sounds like she has a very severe case. Have you tried higher dosages of IVIG? I believe that higher dosages are what currently are being tested in the clinical trial?

I always get the Cunningham Panel done before and after treatment so that it in my medical file. Its documentation that autoimmune treatments work and that an autoimmune illness is going on vs a chemical imbalance. Also helps getting insurance coverage, one extra thing to submit.

I always get the Cunningham Panel done before and after treatment so that it in my medical file. Its documentation that autoimmune treatments work and that an autoimmune illness is going on vs a chemical imbalance. Also helps getting insurance coverage, one extra thing to submit.

May I suggest, as a person with PANDAS who will have to bear the stigma of whatever thist story turns out to be, that we possibly close this discussion/carry it on in private until we know the details of what was really going on in this young man's life?
 
We are jumping to conclusions and it will not help him, or any of us who are non-violent PANDAS-sufferers, to draw too many connections to a dangerous and violent person (mentally ill or not) before we know if they really exist.
 
Please think about those of us who have to live with this disorder. I have already had to ask all of my friends to remain tight-lipped when discussing this news story so as not to draw attention to my having PANDAS. This is very scary for me, and I imagine you feel the same fear for your children's reputations as well.