Kendall's EEG was read immediately after it was performed. Our Neurologist was shocked to say the least. The right side of her brain was normal activity. (I couldn't begin to explain this...her right side has the larger cyst) All I know is there was normal "electrical activity." The overall EEG incredible. A miracle really. We were told Kendall would always have seizures, and at best, the diet would slow them down. Now they're gone. No hyppsarhythmias, no modified hypps... no seizures.
She wouldn't sleep, so we don't have a report on sleeping activity, but in the past Kendall's brain activity has been fine while sleeping.
Our Dr. was very impressed with Kendall's progress since we saw him last. She was showing off a little with her ipad, and putting on quite a show! I think she was just glad the EEG that she screamed through was over!
Since we've had a few questionable movements in the past few months, we have decided to watch her for one more month. Next month we go to a 3:1 ratio for another month, then a 2.5:1 ratio for a month, then we're off the diet by Halloween...
This makes me very nervous, but when a child is on seizure medication and has a normal EEG, they begin to wean off the medication, so we are basically doing the same thing.
The diet for Kendall has been our miracle...but unlike some kids who can tolerate it for years, it will eventually take its toll on her. It has already complicated her Diabetes control, so I have welcomed the idea of her being on a normal diet again.
Maybe, just maybe, she will start eating and drinking by mouth again. Her Dr. said he'd like to see her off the g-button. So would we.
I can't imagine a life where we can feed her bites here and there without worrying about a ratio. Sure, she will always be on a strict carb counting diet, but getting more than 9 grams of banana at a time is enticing! I may even entertain the idea again of getting on the insulin pump! (that thing has been in the box it came in in her closet for almost a year!) Sweet potatoes, pudding, jello, ooooooh....the possibilities are endless!!!
So, like I said this morning, exciting things are happening around here. (and apparently for our Dr. too...he said we were the second Infantile Spasms case that day to have relief)
We are so blessed. So, we got great news today. And I'm elated!
1 week ago