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Back from NIH study


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I am so glad we went. Everyone was super helpful and compassionate. It was a relief to be around people who knew what PANDAS was. If anyone has q's please pm me.

 

How does everyone deal with the ever present danger of being exposed to strep?

Within an hour of being home, we had to take out oldest to the ER because her throat looked like strep. Luckily, she tested rapid negative and the er doc had at least half a brain and heart and put her on meds anyway.

 

I have ocd and its mostly germ related, but how do you all deal with exposing your child like sending them to school?

I seriously would like to put my son in a bubble. I dont want to send him to school :(

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I am so glad that it went great for you

My dd she is 7 has had ivig twice with Dr.k we THINK HOPE AND PRAY that we are on the right track

BUT I am homeschooling her this year because we think that is why she failed the first ivig..

and I am so glad that I am she is not very happy about it BUT she also knows that as much as she loves Dr.k she never wants to see him again :)

So we have 9 months under our belt and holding our breath eveyday

I wish we could had been in the IVIG study..

Where do they do it at?

anyway keep us posted..

Tracie

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