Tuesday we met with Addysons neurologist. He is getting her scheduled for a 3 day eeg so that if we don’t have success with the 24 hour eeg we will be all ready to go with a three day eeg. We are hoping that we can have a successful 24 hr eeg next Monday- Tuesday. They do want this sleep deprived so wish us luck. Going to be a long 24hours. We are open to help!?!
We now understand that nocturnal seizures are epilepsy and that while she never presents typically with anything that her eeg was abnormal and that the keppra isn’t showing effective so the eeg is needed to capture the seizures/abnormal activity while on the medicine.
Wednesday we met with Addysons Neurogenetics dr.
They are reanalyzing her whole exome sequencing
They are ordering the cooling vest and starting her on a mito cocktail. They are writing protocol letters for e.r. And o.r. Regarding time of procedures, npo, what time of Iv, etc. they are getting cardiology to order the NG. they agreed it’s a better quality of life. They said if she gets put under have muscle biopsy pulled
Beaming with hope 