Tuesday, September 12, 2006


I thought I should explain a bit about the clinics I mentioned taking her to. First of all, I am not unhappy with her surgeon. We have been thinking of taking her to a clinic anyway, because we are not happy with her leg braces, which we believe are not helping her as much as they should be. This opinion was seconded by her physical therapist recently as well. While her surgeon is responsible for ordering her braces, the details are up to the people who make and fit them, who have had a hard time fitting them properly. I am not sure who should have informed us earlier that we had other options for bracing that might work better or might have been used in tandem with what she has, but now we know. Her surgeon was very receptive to the idea that we see someone else for an opinion about her hip, because he is very perplexed as to why this happened and he is quite a perfectionist. The problem may be not with him, but with her anatomy. She may just have a hip that won't stay in. We are hoping not.

An arthrogryposis clinic brings all the specialists together in one room--a surgeon, physical therapist, occupational therapist, orthotics maker, and sometimes other specialists. Because treatment is so interdependent, a short time together is very important. Here, her PT, OT, and speech therapists meet regularly to discuss her case, but the surgeon and orthotics people do not get involved. I have always felt this is a problem, because her therapists are so dependent on what the other two do in order to make progress, that it is just really difficult to communicate.

The other benefit of a clinic is that they see so many kids with AMC. Peanut's PT has been working with kids over 30 years, and has had only about 5 patients with it. While AMC has aspects that are similar to other conditions like cerebral palsy, they are in fact rather unique. For example, her clubfoot treatment followed the standard protocols in most areas, except that instead of changing casts every 5 days, we did it every 10 days, because the tissue of her foot is much stiffer than the average patient. Her foot will revert back in a different pattern than in a child with CP, so the splints she wears has to be different. But orthotics makers see many more children with CP than AMC, so they are not always aware of the slight adjustment that needs to be made to the splint to make it work for a kid with AMC--Peanut's wasn't.

The premier facility is considered to be the University of Washington Children's Hospital clinic in Seattle. The woman who literally wrote the book on arthrogryposis, Dr. Judith Hall, worked out of that hospital. The other very highly recommended clinic is at the Alfred I. DuPont Hospital for Children in Wilmington, Delaware. I 've yet to hear anything bad about that place. We have secured an appointment with them (Seattle never called back-must not need the money), but it isn't until January. There are other clinics, in New York City, Houston, and Ann Arbor, MI, that are also well-thought of (and have the benefit of having people we know and love living in the cities). Most Shriner's Hospitals have a multidisciplinary approach as well from what I understand (and there's one in Chicago, which would certainly be convenient), but these are our first two choices. Because we couldn't make things easy or anything. I will be seeing if we can get in somewhere else sooner, though, so all bets may be off. I'm impatient that way.

Okay, now that I've done that, maybe my thoughts can stop swimming through my head in a whirlpool and I can go to sleep.

***The painting is The Club Foot, by Jose de Ribera (1642). While he has clubfeet, he also appears to have the hand positioning of someone with AMC.


elswhere said...

If Seattle Children's ever calls back and you decide to come out here, let me know. I'd love to meet you and you're welcome to crash with us for a few days!

email me if it comes up?
e l s w h e r e at gmail dot com

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jen said...

If you do end up in Ann Arbor, let me know -- we're right here and would love to help out if we could.

DDM said...

I'm another Seattle mom who is fluent in Seattle's Children's hospital. My son has been seen there since he was 8 months old, and had Neurosurgery in January of this year. We know it WELL. I'm having my own scheduling issues with them right now, so sadly I'm not surprised that you haven't been contacted. The hospital has been through a recent massive renovation. Let's blame that. :-) I, like elswhere, would be more than happy to meet you and provide you with a place to stay.