So my daughter has had seizures since 3 months old.
when she was first diagnosed they told me she had left temperal lobe seizures..she was put on meds and was seizure free for 2 eyars. they weaned her off the meds and BAM more seizures. but instead of body twitching, now it was staring and facial twitching. i was told by her old neuro in ohio she had " non convulsive gerneralized epilepsy" i was never told WHAT KIND of seizrues.
well she had an EEG on wednesday and we got lots of seizures recorded. and the new neuro today told me she is have absence seizurs, adn the meds she is currently on, arent for absence seizures which could be why we couldnt get them controlled. she can have LOTS every day, like a hundred or even a couple hundred on bad days if she is sick.
we are getting another MRI done to see WHY her seizures changed from temperal lobe seizures to generalized " full brain". she said it was very unusual for that to happen.
my daughter also has gene deletions on her chromosme 7 and she has extra repeats on one of her X chromosomes, and it could even possibly be autism.. but she really thinks it ISNT, but there is always that chance.
SO FINALLLY after 4.5 years, im getting answers and more tests done instead of some doctor DRUGGING my daughter. the new neuro told me her dose of seizure meds is way too much for her little body. So she is starting a new medicne that is for absence siezures, and she said i should notice a big drop in seizures in just a few days. Im so happy. My duaghter cannot live the quality of life i want her too, she is missing alot of her day, because of all her seizures and thats why she is so delayed.
This was Emmalynn on Wendesday when we did her EEG.
and this what a seizure looks like on and EEG... you can see all the big squiggles and thats the actual seizure.
PLEASE PLEASE either pray or send us vibes or anything that this helps my daughter... my heart breaks for her and i just wish i could take her place every day.