We had to go back to Cleveland for a routine EEG and follow up with the dietitian and neurologist. I was thinking about cancelling because July was great for Naomi then some changes were made and her molar started coming in and she went down hill. I figured we were wasting everyones time and the EEG would just be more of the same. It wasn't it showed IMPROVEMENT! She's not seizure free by any means and I knew the EEG would not be normal but I am thrilled that she's taken a step in the right direction.
I'm going to tell you all this mumbo jumbo and just play along like you understand.
There was no _________ I can't think what the Dr. calls it but it's good that it's not there. :)
There was no spikes, no seizure pattern just some spots here and there. The brain activity is slow so that's why we're seeing the developmental delays and probably has something to do with the underlying cause (unknown) of her seizures.
I told the Dr. people always ask if she'll outgrow them. I feel like, if she does... GREAT! but I'm not planning on it. I'm working towards her being seizure free at some point but for now, it is what it is. The Dr. said it's not something we can predict right now.
Naomi SCREAMED through the whole EEG, from marking her head to glueing on the electrodes. She fell sound asleep, then had to be waken because the test was done. Then she screamed some more when they took the electrodes off. The nice EEG lady made sure she got the gunk out of Naomi's hair and even combed it and put it in a pony tail.
The dietitian and I decided to go back to a 3.75:1 ratio for Naomi's diet. I think that on that ratio she is more regular in her bowel movements and that effects a lot of things for her and her seizures were better at 3.75:1 than they are at 4:1. Plus her BHB, which is the ketone level in her blood stream didn't change one bit from 3.5:1 to 4:1 so why deprive her of those good carbohydrates!
They all thought she seemed more calm and was extremely interactive and social. Actually she tried to climb up into everyones lap. Even some guy on a cell phone in the waiting room. She's all for trying out a lap and if you're near a computer where she can tap on the keyboard all the better. She kept putting her hand out at the Dr. and smiling like "hello friend". It was sweet.
I was talking to a mother in the waiting area who had a 3 year old there who saw the same Dr. we do. She told me she took her daughter to Colorado to see a Dr. about her seizures and he looked at her chart and who her doctor was and told her she couldn't get a better Dr. So back to Cleveland they went. I knew we had a good Dr., a great Dr. actually but it's nice to hear stories like that. She also said she called and talked to Martin,( the clinical nurse we used to also work with before the diet) her daughter had 4 seizures back to back and he told her to get to the ER. She told him they were 45 minutes away and he told her GET HER TO THE ER. So she threw her girl in the car and drove to the ER and when they got there Martin was there waiting on them. That is dedication! To your job and to the patients you care for.
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