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Update on IVIG study


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Just want to let you all know I spoke with one of the NIMH researchers about the IVIG trial. He said they're about a year out from completion, need a couple more kids and results should be published shortly there-after. (Not soon enough for me! Currently fighting ins for it)

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My 9-year-old son is going to participate in the IVIG study at NIH. I'm hoping to connect with other parents who have taken their children there or plan to. Please contact me if you have any personal knowledge.

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My Ds 7 1/2 yrs just went thru nih study at NIH. First ivig about 2 Weeks ago. He seems better on some behaviors but worse on others. I have read that his symptoMs are normal for others that have gone thru ivig. Trying to wait it out.....he still experiences crying fits, tantrums, brain talk, and some anxiety. He is also on a short fuse as dar as temper.

 

Has anyone else had this reaction with ivig? The waiting ig out is hard when you see your child still suffering. I pray every night for him!

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Thank you for all your support!

My DS had symptoms/side effects of getting the real thing (vs the placebo), such as back ache, joint pain in hips, headaches, & vomiting.

I know this is a journey, & I am thankful to the NIH for sponsoring this study. I hope that we will see results from the IVIG in my DS as time goes on.

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  • 3 weeks later...

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