Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Tuesday, December 11, 2007
The scariest thoughts
I am not the most scared of autism. Although it's not going to be a picnic, I feel somehow we will get through it and Janey will be happy, which is what I mostly care about. My scariest thoughts are if it's not autism really, if it's the other things that were hinted at during her assessment. She needs an MRI. When she had one at 18 months, there were some abnormal spots. No-one explained them well to me. We now need to know what they are. She needs a EEG. She might be having absence seizures. We need to figure out why her heart sounds funny. I fear in my darkest moments she has some kind of horrible genetic disease that will take her away from me. My sister lost her love last month to Marfan's Syndrome and complications of heart surgery. He was 40. He was a special, one in a million person. It does happen. People have terrible things happen to them, for no reason at all.
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2 comments:
How was the process of doing an MRI when she was this age? The Dr. wants us to get an MRI of our son's (9 months old) brain. She said he would have to be put under with an IV & given contrast. This scares me a lot. Any feedback you have would be most welcome.
Janey has had two MRIs, one when she was about 18 months and not walking, and one at 4. They really weren't too bad. She had to be put under with an IV, but I don't think she had contrast. She came out of the anesthesia fairly easily, but I have seen from my other two kids that it varies widely by person how that affects someone. The hard part of both of them was actually getting straight answers about what they showed. It seems like it's a lot easier to get tests than to get someone to interpret them for you.
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