New updates on S/P IVIG

[pmoreno]

Hello all,

It has been 1 week and a day since Gaby had her IVIG and I have been seeing general improvements right along. Yesterday and today she was extremely social and interactive with other kids (a first in a long time). I still hear an occasional odd comment or unusual worry maybe once or twice a day, but her concentration is sooooo much better and so is her mood. No more angry outbursts at this point - still no re-occurence of any tics. I'm almost afraid to relax and enjoy this - afraid it will all disappear. That is my greatest fear - that all this wonderful change will be short-lived and that sometime in the future we'll be dealing with this again. I'm such a skeptic. Anyway - so far so good.

 

Linda, if you read this, if you're thinking of going to Florida instead of Chicago - you would be very happy if you went to Creation's Own in Melbourne and saw Scott Smith the P.A. for Dr. Bradstreet - they're wonderful there and would do IVIG if you want. Also, they're extremely informative about PANDAS, are very up-to-date on diagnostic tools and don't believe in covering symptoms with a lot of psychotrophic meds.

Pat

[amy s]

Pat,

So good to hear your news about your child. Thank you for posting an update.

[bmom]

Thanks for keeping us updated Pat. I pray that you never have to worry about this again.

[bmom]

Pat, I have a question on your daughter: The tics she was doing, were they frequent like tourettes and did they ever change or always stay the same. I know you mentioned her hands in a claw. My son does this or a hand clench. He also does hard blinks and small cough, but they have changed over the last few months and I was just wondering about your daughters as we will be doing IVIG soon too. Also, did you ever notice the dilated eyes and have these gone away?

[Dedee]

Pat,

 

I am so happy to hear that Gaby is doing better. Whenever I hear of a child receiving treatment that is helpful, I rejoice. It's great that we have this forum to share information. I am sure your experience will help someone else. My hope is that there will soon be a recognized plan of care for these children, and we are getting there one child at a time. Thanks for sharing.

 

Dedee

[amy s]

Pat,

How is your dd doing now? I hope so much that you still have progress! Keep us posted when you get a chance.