So Cailyn has been doing great. I know the second I write this she'll make me eat my words, but she hasn't had a seizure since July 27. Talking about it always jinxes it.
Today she went to the neurologist and it went well. We will lower another medicine and see how she does. He's given us clearance to go 6 months without coming in to see him, so we won't see him until she's 2, can't believe she's closer to 2 than 1.
He also suggested another syndrome for the geneticists to check out but at this point I take all of these tests with a grain of salt. There have been sooo many negative tests so far. It's great to knock out so many different diseases but annoying to have no answers.
This is the latest possibility... Rett Syndrome
Rett syndrome is a neurodevelopmental disorder that is classified as an autism spectrum disorder by the DSM-IV. It was first described by Austrian pediatrician Andreas Rett in 1966. The clinical features include a deceleration of the rate of head growth (including microcephaly in some) and small hands and feet. Stereotypic, repetitive hand movements such as mouthing or wringing are also noted. Girls with Rett syndrome are prone to gastrointestinal disorders and up to 80% have seizures.[1] They typically have no verbal skills, and about 50% of females are not ambulatory. Scoliosis, growth failure, and constipation are very common and can be problematic. Some argue that it is misclassified as an autism spectrum disorder, just as it would be to include such disorders as fragile X syndrome, tuberous sclerosis, or Down syndrome where one can see autistic features.[2] The symptoms of this disorder are most easily confused with those of Angelman syndrome, cerebral palsy and autism.
This one is actually interesting because they've talked about a number of these things. So we'll see when they test for this what comes up.
Next week we are going to a long evaluation with both a dietitian and a speech therapist to work on Cailyn's eating. Trying to get her to eat the right amount and improve how she eats too. She's still on mostly baby food because of her chewing difficulties.
1 comment:
Before anyone reads this and jumps to conclusion that since Jen posted this Rett Syndrome description, Cailyn must have this. The latest Vegas Odds have already come out and have the chances for this being Cailyn's diagnosis as 100,000 to 1.
The only 2 symptoms we can definitely say she has is constipation and everyone gets constipated from time to time and the seizures (which as Jen mentioned have declined greatly). Her head is not too small (maybe too big), she has daddy's head and it is pretty big. Her hands and feet are not small, they fit her body quite well. Hard to say she has repetitive hand motions since she still is trying to get control of those hands. She may rub her face a lot but hardly what is described by Rett as repetitive motions. Like her mother, she does not shut up at times. Maybe not making real words but she can be loud and obnoxious with what she can do. Scoliosis, some may disagree with taking Cailyn to Chiropractor, but you'd think the Chiropractor would notice issues with her spine...if not what are we paying her for. Growth failure, she is half as tall as Jen...enough said.
Anyway, I just wanted to make sure everyone understands just because Jen mentions a disorder that Cailyn is being tested for, does not mean any doctor has come out and said that is what she has. So far, every bad thing that the doctors have tested for has come up negative. So, don't go surfing WebMD or Googling Rett disease, you will just learn a lot of depressing details that will not pertain to Cailyn.
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