Saturday, February 2, 2008

Children's Hopsital

N had his appointment at the Children's Hospital on Thursday. T, N and I traveled there together. The team spent three hours with us. I couldn't believe it! They weighed N and took his vitals and did a physical check. We met with the gastroenterologist who took N's history and then responded to any physical concerns. We also discussed any possible strep connections with the doctor. [His response was so different from the local pediatric infectious disease doctor we saw earlier.] He had such an open, interested-in-research attitude. He wanted to explore any possibilities along those lines (and was intrigued by the possible connection). By the time we were done, he had already mentally identified a doctor or two specializing in strep and maybe another working on PANDAS with whom he wanted to talk. We also met with a social worker. I'm still not sure what her roll is. And then we met with a dietician.

They poured information into us. Most things we had already learned along the way. Most of the best information had already come from the parent-support forum at It just reminded me how much we really needed all of this support five months ago when we felt like we were drowning. They were all very supportive of Maudsley's refeeding.

I differed with them only on one main point. They suggested that N was already "weight-restored." On their scales, he was weighing 90 lbs (59 1/4 inches). The goal weight that I set, based on his past height (58 3/4 inches) and his own past percentiles was more like 95 lbs. I've heard so many parents at talk about the need to aim higher than just at the 50th percentile. That is where N is right now. In fact, even at his lowest weight, he was maybe around the 15th or 25th percentile (still normal weight-range to all the doctors). I realize that N may still need time for his brain to become fully renourished, but I feel like his weight needs to be a bit higher. I disagree especially because I see the anorexic behavior decreasing with each pound gained. He has come so far -- why would we stop?

In almost every other way, we were all on the same page. They are good doctors and their team approach is refreshing. We're scheduled to go back in March. They were going to be contacting and communicating with N's therapist, which is fantastic. I'm going to work planning N's meals with more heart-healthy foods. I already know that will be a challenge. I've struggled to find sufficient foods for him that won't fill him up too fast, yet are nutritionally dense.

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