My son is 9 and got diagnosed last month
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May 12, 2013 at 6:49 pm
Hi,
My name is Sarah. I live in NJ,US. My son is the 9 and got diagnosedwith CIDP. What is your story He got his first dose of IVIG and we are still waiting to see if he walks better. Please let’s get in touch. So scared and confused. He was fine in Feb and in March everything went downhill. -
May 13, 2013 at 3:31 am
I have CIDP, but I am 66 years old. There have been some contributors here with children who have CIDP, but I haven’t seen their posts in awhile. I hope they are still following this site and respond.
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May 13, 2013 at 1:58 pm
So sorry to hear about your son, I do understand. On a good note, the fact that your son relapsed after IVIG is proof that it does work for him. That is half the battle, not everyone responds and some people get the wrong diagnosis, so you are ahead of the game. Now you have to find a schedule and dosage amount that works for your son. If possible, could we communicate via email or phone? I would love to give you any info we have so that you don’t have to go through the mistakes that we did. I will check back later today.
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May 13, 2013 at 6:10 pm
Hi dawn my email is intaglio82@hotmail.com. Thanks so much for responding and I will send you my cell no via email.
Sarah -
May 13, 2013 at 6:11 pm
and thanks GH ..:) I found the person I was looking for……
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