questions about rhett syndrome

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in the day program that I work in there is a young woman who I belive has rhett syndrom (her charts list MR and failour to thrive) she exhibits most of the objective symptoms, though a genetic test would show whether or not the variation on Mecp2 (or something like that) is present. really my question had to do with broaching the subject with her parents. I know that they have been looking to various professionals for answers, and I would like to tell them to challenge their doctors to tell them why this isn't valid in her case (because I don't think they will be able to). She presents in a somewhat atypical mannor (is verbal, though barely wispers outside of home) Is there anyone out there who has this dx that I could email with, I see what both she and her parents go through and want to be able to do something, though as an aspie I tend to misjudge how to proceed on things like this.

Do you mean Rett Syndrome?

does the child have seizures?

When you call her a 'young woman' I am assuming either late teens or early 20's. If she had Rett syndrome, it would be far more severe by then. Girls with Rett syndrome develop normally until they are about 2 years old then lose each skill one by one. A common symptom is hand wringing which is repetitive and very obvious when you know what you are looking for. Girls with Rett syndrome usually lose their speech quite quickly, so if she is older and still speaking at all, it is very unlikely. Rett syndrome is a very severe disorder. I would suggest that you look into it in more detail before saying anything because although I can't be certain, it sounds unlikely.

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I have HFA, ADHD, OCD & Tourette syndrome. I love animals, especially my bunnies and hamster. I skate in a roller derby team (but I'll try not to bite )