The primary treatments for Epilepsy are AEDs (anti-epilptic drugs).
One of the oldest AEDs is phenobarbital. It was the first drug we tried with the IMP. The side effects of these drugs are terrifying, but the impact of the seizures is worse than the side effects. 1/4
A epileptologist (neuro that specialized in epilepsy) once told me that for any seizure drug approximately 15% of patients will benefit, 15% will get worse, and the rest there will be no change. I'm not sure if he meant all people with epilepsy or specifically CDKL5. 2/4
I do know it takes a long time to titrate up to the correct dosage, then you have to give it time to work (or not), if it doesn't it generally takes even longer to wean the drug. Trying seizures meds puts new meaning to the phrase "practicing medicine." 3/4
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