Ali Claypoole's photo.
Two weeks ago our brave child spent two days hooked up to an IV receiving donor antibodies that we hope will retrain his own antibodies to not attack his brain*. On the third afternoon, all the meds included seemed to wear off and he spent a lot of time in my bed with a massive headache and camping out on the bathroom floor in between vomiting bouts.
Ali Claypoole's photo.
 He then took Tylenol, Motrin, and Zofran (anti-nausea) for three days and seemed better after just that one rough evening.
Our hope is for a 2 steps forward, one step back recovery over the next few months. Our doctor told us it could be like turning back the pages-so we may see some symptoms we haven’t had for a while. They also told us to expect a flare-up of symptoms in 2-3 weeks and not to despair, that is a normal part of the post IVIG time. Then the zig-zag recovery should continue and it may take up to 6 months till we see the full results.

Ali Claypoole's photo.

We finally did IVIG because despite the gains and good periods of time, we always had setbacks and backsliding. His separation anxiety is still so debilitating, leaving him with someone other than Chris or I is a major trauma (for all involved). We can’t figure out how we were able to go to Paris a couple of months ago as just going to the store without him is now major trauma. Our hope is that this treatment will help him take back his personality and childhood.

Last week we had a major, public tantrum (I may post a description about that… still debating). But overall he seems back to the baseline of where he was before IVIG, maybe a little better. We’re getting him to sleep a little earlier. Although, bedtime drama continues-we think it’s the separation. And I took him for a pizza lunch recently where he ate without washing his hands or using hand sanitizer. I know, weird for a family terrified about germs, but HUGE for someone who had anorexia from OCD earlier this year! I swear, he’d just washed them before we got there anyway. And he wore sweat pants… epic in our house. Only. Ever. Wears. Jeans. So we think these may be little signs of progress.

Ali Claypoole's photo.

It’s also been nice to have his sister home for a day off school recently and now some snow days. They play and play (even giving mama time to blog). Often, I think she is the best medicine. After the months of mistreatment from him during the worst PANDAS anxiety and OCD, it melts my heart daily to see her have her big brother back and him able to enjoy their special friendship.

So, we are bracing ourselves for a possible rough patch now that we’re 2 weeks in and then we’ll continue eagerly hoping for more healing!


*To learn more about IVIG, click HERE

1 Comment on IVIG

  1. Andrea
    January 27, 2016 at 1:05 pm (2 years ago)

    So glad things are stabilizing and we can await better things to come. The brother-sister love just melts my heart!!


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