Kiera Posted April 5, 2012 Report Posted April 5, 2012 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)
trggirl Posted April 5, 2012 Report Posted April 5, 2012 Thanks for the update. I'm looking forward to the results too!
Lor Posted April 10, 2012 Report Posted April 10, 2012 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.
Kiera Posted April 10, 2012 Author Report Posted April 10, 2012 PMed you. Look in top right hand cornor.
Kimiejoe Posted April 11, 2012 Report Posted April 11, 2012 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!
nicklemama Posted April 12, 2012 Report Posted April 12, 2012 The first 6 wks post IVIG, my DS was ticcing pretty bad, then it all went away. At 90 days out, he was doing great. It takes time to see results of IVIG. It was a slow and steady process.
NancyD Posted April 12, 2012 Report Posted April 12, 2012 For my DD it always took 7-9 weeks to see results and then the results were huge.
bulldog24 Posted April 12, 2012 Report Posted April 12, 2012 Remember the first infusion could be ivig OR placebo. You dont know for a few months
Kimiejoe Posted April 12, 2012 Report Posted April 12, 2012 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.
Kimiejoe Posted May 3, 2012 Report Posted May 3, 2012 Next IVIG in about a week. Should be the real thing this time. How are others in the NIH study doing on IVIG? Has it helped?
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