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Well my 15 year old son now has had IVIG as well. We were blessed to have a cooperative hospital nearby and as long as a doctor prescribes it, they do it with the hospitalist signing off on it. Their scale must be funky though. I know my son weighs 150 but they said he weighs 170 which gave him more like 1.7 per kilo of weight. Any way, he had it Mon and Tues, slight headache yesterday till night, then it became much worse. Very nauseous today. My daughter too had those symptoms in spite of taking 40 grams of pred, benedryl and motrin, so I'm wondering. Since she's doing very well pretty quickly (about 1.6 per kilo) do kids who get sick after do better? I imagine it's really cleaning house in his brain, so maybe the sickness is a good sign? Just wondering if kids who have side effects heal any differently than kids who don't? Daughter had IVIG 3 weeks ago and is doing amazing.

 

Nancy

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Hmmm..I hope so since my daughter got sick and had a bad headache as well. She had IVIG with Dr. K exactly 2 weeks ago today but I have not yet noticed any improvements. When did you start to see changes? I've been down in the dumps this week because she has been so plagued with symptoms.

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We did 3 rounds of IVIG with Dr. K. During one of the procedures, he told me that - for some reason - his PANDAS kids who get sicker post-IVIG (headache, nausea, etc.) also seem to respond better in the long run. Said he wasn't sure why, but that was the pattern he had observed with his patients. So Nancy, maybe that bodes well for your ds!

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