Monday, March 16, 2015

Allergic Reaction. Ugh.

We were on Day 11 of Augmentin,  and things were going so well. Still tics and fears of eating, but she was so happy again!

And then she got a huge hivey, bumpy rash on her stomach,  legs, arms and face. Her eyelids were swollen.

We stopped the meds and are waiting for the doc to call and tell us what to do next.

Sunday, March 8, 2015

"Diagnosis"

We saw two PANDAS specialists this week, both of whom stated our daughter fits the criteria for PANDAS quite well. In fact, the second one said our daughter could be the "poster child" for PANDAS. But diagnosing PANDAS is difficult because it is a syndrome with a clinical diagnosis based on history, reaction to meds, blood tests, and many other things. There isn't a single definitive test that can be run. 

The second doctor we saw said, "I'm sorry to meet you. Your story sucks." I guess it's good he didn't sugar coat anything. But he also said it's good we are starting to treat this when she is so young, because it is easier to treat the little ones.

There is hope. But that doesn't always make it easier.

Case Studies & Medical Journal

The Journal of Childhood and Adolescent Psychopharmacology has an issue about PANDAS/PANS, and it's full of interesting studies and information. The articles feature studies done by, among other physicians, Dr. Swedo from the National Institute of Health, and one of the leading experts on PANDAS and PANS.

In one of the articles there's a case study of a child whose sudden onset of OCD caused her to carry a plastic bucket everywhere with her due to extreme fear of vomiting. It's amazing how our story is almost identical to so many out there!

I don't know if these articles will be free forever, but they are for now. Definitely good to read, save, and print for your own records and information.