She is still delayed in school, but is retaining about 1/2 of what she is taught. Chey is earning A's and B's in her subjects that are adjusted to her 3rd grade level( remember- she is 13 & in the 7th grade....). She started this year on a First to Second grade level. We are not sure why her seizures are causing her delay- but we are so grateful for the improvement!
Today we are at university of Utah Primary Children's Medical Center. (this place TRUMPS Stanford Children Center with friendliness, compassion & remembering we are PEOPLE not NUMBERS!) Cheyanne is undergoing another sleep deprived EEG to see if there is any improvement and if we can reduce her medication even more. We could only sleep between midnight & 4 am last night. We couldn't make it til midnight so we slept from 11pm to 2 am... Oh yea!
The past few months we reduced her Depakote. She was on this for over 10 years. She had to have blood work every 3-4 months to make sure it wasn't killing her liver & other organs while it was controlling her seizures. Although I thank Depakote for the help it gave her, I am soooo relieved to have her off of this! She is a different girl and is finally successful in school... Along with the fact we don't have blood work!
Anyway- this is what they are doing today to test for SEIZURES...
Chey was "fitted" with 32 electrodes at key points in her head to monitor her brain waves and 2 heart monitors. Then warped with the most stylish head wrap... I know your all jealous!
She just LOVES sharing her pictures during these times!
Then they put her thru some tests...
-Keeping eyes gently closed for a minute.
- opening her eyes
- Closing her eyes tightly
- Then doing fast breathing blowing a pin wheel for 3 min.
I compare this to the "Don't push" breathing in Lamaze.
Then she was told to sleep for 25 min
The Nurse then had her go under a strobe light
Supposedly, these lights trigger seizures... It's never happened for us.
These are what brain waves look like:
And they video tape the entire time in case she has a seizure. That way they can see what the body does as well as her brain during a seizure...
The video is the little box.
Still no physical manifestations of seizures. Hurray!!
Hopefully the test will reveal something.....
What fun are YOU having this Friday?
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