Pizza

Can I tell you how excited I am that she ate pizza today? And yesterday? Her love for Target pizza (the individual sized Pizza Hut ones they sell in the café) is back, at least for now. It sounds so strange to celebrate my daughter eating junk food, but it's a new food! And it has fat in it! And she asked for it! And she has a ton of weight to gain, so eat up, little girl.

Next Steps

We went to see the PANDAS doctor yesterday. He's great. A few things from the appointment:

- He was disappointed, as were we, that she didn't have a more significant reaction to being on steroids. He said generally speaking, kids who show drastic improvement on steroids tend to improve more dramatically after IVIG as well. That doesn't mean it won't work, but it's still hard to hear.

- Next week, after being off steroids for two weeks, we'll get labs drawn. Then we'll start seven days of antibiotics + steroids (higher dose) at the same time to see what happens. (This will be HORRIBLE, both the blood draw and the multiple meds, because it's so hard to get her to take medications. We'll have to have some super duper bribes ready. It's time to start breaking the piggy banks.)

- She starts Motrin twice a day starting today. Motrin is supposed to help reduce inflammation in the brain of PANDAS kids, making their symptoms lessen.

- He's very concerned about her weight. (We are too.) She's only 33 pounds at 5 years, 8 months old. That puts her well under the 10th percentile. It's so hard to get her to gain when she only eats four foods.

- We'll follow up with the doc at the end of June, in about a month and a half.

Current symptoms: Lots of tics more frequently. Still asking series of questions before eating/drinking anything. Only eats: McDonald's pancakes, Pringles, hotdogs and pretzels. Only drinks: water. Needs to gain LOTS of weight.

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.

"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.