- 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.
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