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IVIG please write your success stories


Kathy4Him
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My DS 23 was supposed to have IVIG last week, Nov 12. but had a severe panic attack over having donor antibodies put into his body. Needless to say, he has not done it yet. If your children have done IVIG with success can you please post stories so I can show him. His counselor thinks it will help him to see positive results in others. Thanks so much! Happy Thanksgiving.

Kathy

Edited by Kathy N
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My dd, then 11, had to get through the IVIG despite intense needle fears, as well as general blood/contamination fears. At the time of her IVIG she'd been debilitated for seven months from an exacerbation. She had been misdiagnosed for years and had previously suffered many severe exacerbations. Within 3-4 weeks of IVIG the improvement began and a couple of months out her life had turned completely around. At thirteen, she's had a few blips here and there, but all have been successfully addressed. She is happy and thriving, and if you didn't know her you'd never know what she'd been through, or that she suffered terribly with OCD for months, and was unable to dress regularly or participate in usual life activities. She has an immune deficiency and may need another IVIG for that at some point, but so far, so good. My ds (8) just had his first IVIG. He, too, had been misdx'd and had unchecked PANDAS for years-- docs think since toddlerhood. I didn't expect to see anything for at least several weeks (based on dd's experience and what others have reported), but we've already seen considerable improvement. At first I didn't want to acknowledge the signs that he was improving, or read too much into them, but at this point it's too much to chalk up, and the changes so obvious, that I feel safe claiming it. He came to me ready and wanting to work on his OCD (with ERP), he's much happier, experiencing far fewer OCD problems in the day, and his expressive language seems to be improving, as well as his level of engagement, the range of interests and activities he's able to pursue (his PANDAS has really limited him), and he just seems more like himself, more like the little kid he is and should be able to be. He only completed his IVIG 11 days ago-- so we are encouraged and hopeful.

 

HTH

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I have two children that have both received IVIG probably 6 times each. I asked their infectious disease doctor what she thought-if I should be worried. She said it is riskier for them to get steroids for poison ivy than to get IVIG. She said it is safe it is just risky to the wallet:)

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Wish I had time to type more but...IVIG was the kick start to DD10 healing for sure!! It "brought her back" so to speak. She had IVIG Feb 2012 with Dr K. I discovered PANDAS/PANS January 24th 2012 and we got IVIG in Feb. DD10 was basically nonfunctioning. (Had been a high functioning, highly intelligent, curious, creative, strong, talkative, compassionate, amazing writer and more). The IVIG stopped the headstands and writhing movements by the end of the 2nd infusion!!! The tics disappeared over a week or so. The OCD remained. We then discovered, treated and got rid of co-infections -- and she is 9 months out and doing the best she has done in a year!!! She had one flare in June 2012 (this is when we discovered co-infections). She had her infected yukky tonsils and adenoids out in July 2012. She is a work in progress but I say we would not be where we are without having done IVIG!!!

There are almost zero compulsions - really just reassurance seeking which we are able to be in intense CBT/ERP now. (She is kicking butt!) We ask ourselves if it is even OCD anymore??!!

I am sending good positive thoughts your way!!!

Also check out this book if you haven't already:

Helping Your Anxious Child: A Step by Step Guide for Parents.

((hugs))

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My dd12 just had her fourth IVIG done. The first IVIG got her to 100% for 5 weeks, the second one to about 90% for 8 weeks, the third one didn't do very much (was about 80% for 9 weeks), and the fourth one is too soon to tell. We just found out that Lyme came back so we are thinking that is why the third one wasn't as effective. IVIGs are very easy and my daughter looks forward to them. She finds it relaxing and it helps her feel better.

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  • 2 years later...

Wondering if anyone can recommend an IVIG friendly doctor in the North/South Carolina area? My doctors agree it would be a good thing to try but aren't familiar with the protocol and therefore don't want to prescribe.

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