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@jakedduck1

@mmas
Obviously, every day seizure free is good. What type/s of seizures does your daughter have. What has her usual seizure frequency been?
Best of luck to you both,
Jake

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Replies to "@mmas Obviously, every day seizure free is good. What type/s of seizures does your daughter have...."

She has weekly seizures in sleep but has had 2 brain surgeries at the age of 1.5 and 2.5. She is 6 now. Before surgeries seizures were more like daily. She has tried probably a dozen meds to tame them but they are winning. Would LOVE for her to be seizure free especially given what we have been through. She has developmental delays and physical deficits from surgery. I hate seizures!! They are so unpredictable. Just frustrating!! As we all know. Hanging in there and she is happy so that’s the positive! Thanks for listening!

We are a little over 2 weeks on epidiolex and she did have her weekly seizure last week but we are only at 1/2 dose in which we can be giving so there is hope. Will continue to to keep you posted!

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