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Old 05-15-2013, 12:31 PM   #11
Jen's_4
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Re: How would you feel if your child's diagnosis was removed?

It's not on the spectrum at all, actually. I just used that as an example because I figured people could relate to it since everything is changing in that area, and almost everyone knows someone on the spectrum.

It is (or was) a medical diagnosis, not a subjective thing like language delay. I'm confused and pretty annoyed about it....But when all my family has asked about test results they are all "oh that's awesome!!" and "such good news!!". But I don't feel that way. I wanted to know that I wasn't crazy for feeling this way.

Kennah was diagnosed with focal cortical dysplasia (brain damage in the frontal lobe) at twenty months after a long line of delays and some EI. She has had some physical delays, still has many receptive and expressive language processing issues. Off the charts sensory issues, oral motor issues, and pretty big memory issues. All of this was explained with her diagnosis....they said that the part of her brain is damaged is like the entrance/exit ramp of the highway highway so it would effect her in many ways.

She was diagnosed with an MRI. It was a surprise finding, they thought at the time they would find evidence of a stroke. She has been having some infrequent staring and rapid blinking spells which had me worried about seizures (very common with FCD). Did an EEG, the two sides of her brain reacted unevenly which the Dr said usually indicates brain damage and was probably just the spot we knew about, but they wanted to do another MRI. We did that Monday, and it showed nothing. No seizure activity, no brain damage, nothing.

I asked the Dr what is causing all the delays and her brain to react unevenly and all, and she just said she didn't know.

She has an appointment at the Thompson Center (autism and neurology place) that we've had set up for months because she failed an autism screening and we've thought for a while she may be on the lower end of the spectrum.

It's just so frustrating. I want to know what's going on. I don't want to be the crazy mom who wants her kid to have brain damage. I DON'T want her to have brain damage. I don't want her to have issues at all. But she does, and I would like to have some answers.
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