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Epilepsy & Seizures | Last Active: Mar 24 4:18pm | Replies (77)
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Thank you for this post @bearbayou !
@jemollica, I completely agree with @bearbayou's perspective. As my doctor always says, every patient is unique – even two people with the same diagnosis can respond very differently to medications. For quite a while, I was able to control my seizures with a pediatric dose of Keppra, even though I'm 55 years old!
I'm so glad to hear your son has reached an XCopri dosage where the blurriness has resolved. That must be such a relief! Has XCopri also helped reduce or stop his seizures?
I'd love to learn more about your son if you're comfortable sharing – what type of epilepsy and seizures does he have?
Chris
Replies to "Thank you for this post @bearbayou ! @jemollica, I completely agree with @bearbayou's perspective. As my..."
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Hi Chris
My son had emergency surgery in 2016 for a intraventricle central Neurocytoma of a massive tumor- had no symptoms of a headache - major complaint frequently was upset stomach with vomiting that the emergency room always dismissed as a bad virus or other digestive ailments which all proved not it was from the tumor growing in his brain- he’s since had 9 brain surgeries one of which they inserted a VP PRO GAV SHUNT - result of these he remained with many disabilities and seizures- he’s tried multiple seizure meds thru the years to finally after 2023 having his last surgery of an anterior temporal lobectomy and taking xcopri along with onfi he has been free of experiencing his constant outward seizures , but he is suffering on a daily basis inward seizures like electrical painful sensations in his brain that neurologists can’t seem to alleviate - he tried migraine meds , Botox and injections to no avail and stopped - he continues with his daily therapies and keeps a positive outlook it’s our hope they will find a relief for him to have a quality life