9 months post IVIg

[amy s]

Hi all,

Just wanted to post an update regarding my dd who had IVIg after a very severe bout with PANDAS lasting about a year or so. You can go back and read my other posts to hear about her symptoms, but I'm guessing most of you on here are familiar with our story.

 

She is doing great, back in school, literally, back in school, daycare, everything is back to normal.....almost.

 

In early July we took a family vacation and just before we left we believe she was exposed to strep. For about a week these are the things we saw....which even though extremely mild...we knew it was NOT her usual self.

 

motion sickness out of the blue

urinary issues

hyperfocus on things she likes

hand tremors return

one day after daycare the first day back from our vacation and she started 'telling on herself' again. Well, that was it-- for sure I knew it was back. I asked her pediatrician to give her full strength antibiotics and a full dose of steroid burst. Currently she is on 250mg Augmentin and the full dose for her was 1700 daily for 10 days. I decided to wait on the steriod burst to see if that would help and sure enough, the antibiotics alone helped so we will save steroid bursts for the ace in the hole when upping the antibiotics doesn't help, if/when there is a next time.

 

She has had NO OCD no RAGES no psychatric issues at all. She is really doing so good and I can't believe how much of her came back to us after IVIg.

 

I want to wish you all good luck with your children and families. We are still working through our issues here, after the horrors of dealing with pandas. Luckily she seems fine from it all....but it's the rest of us who have to move on. Take care all.

regards,

amy s

 

ps. I see they have postponed the release of "The Boy Who Caught OCD", by about a week or so. I had preordered it from Amazon and they sent me a notice.

[chrisw]

Amy,

SOOO HAPPY to hear of your daughter's continued improvement!!!!!!!! You and your daughter give me and others much hope. Take care.

 

Christie