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AmbersMommy

Response to IVIG - Questions

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Hi,

 

My daughter was diagnosed with PANDAS and Lyme back in 2010. We had IVIG treatments for a year. Her worst symptoms including hallucinations, OCD and sensitivities to light and sound all but disappeared. However, we had and still have major issues with her ability to pay attention. She also has started laughing uncontrollably and can't really tell us what she is laughing at. Her teachers say they aren't able to teach her anything at this point. She started IVIG treatments again this year. She has had 5 of them. The laughing has gotten worse. One thing that has improved greatly is her stamina, and she doesn't have pain in her knees and feet anymore. So, what is going on with her????? She can't concentrate on anything anymore and the uncontrollable laughing is awful. It isn't constant, but it does prevent her from learning. I was having her read to me tonight and she just kept laughing. Could this be a side-affect of IVIG treatment. Does this mean it isn't working? Any insight would be greatly appreciated.

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A friend whom was a part of a NIH study for Pandas was told by Dr. Swedo that ADHD is often a co-morbid condition to this disorder. Is it caused by it? Maybe. She did say that it does need to be treated, the ADHD separately.

 

Do you have her on a gluten/Dairy free diet? I cant speak to this personally, but I have a ADD son, an I am finally starting to address it from this perspective. I have had much positive feedback regarding how helpful/important this aspect is.

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My son has had phases of these uncontrollable fits of laughter for 8-1/2 years since that fateful day he came home from school psychotic. He's currently so sick he's undergoing rituximab therapy and has the same fits of laughter. It's not the IVIG it's definitely pandas. But unfortunately we've never found a treatment to manage those symptoms. If she is otherwise stable, I'd just wait for them to abate. One other thought, I know for a fact his are worst in the spring. Not sure where you are but if you go on pollen.com and check local pollen counts that could be a clue.

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Do you have a doctor that might run a neurotransmitters test? My son had one about 6 months ago and his glutamate, histimine, norephrinphine levels were very high. If neurotransmiters are out of balance this could be causing some problems for your daughter.

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Ditto on all of bradsmom comment.

My daughter , after continual monthly ivig, cellcept, solumedrol and rituximab has very few symptoms remaining.

The psychotic-sounding fits of laughter are gone and have been for months!

 

Def pans (or AE) & not an IVIG symptom.

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