1. < Epilepsy & Seizures

Lennox-Gastaut syndrome (LGS) diagnosis

Posted by davesmo04 @davesmo04, Sep 23, 2017

Hello. Has anyone heard of a LGS diagnosis for a 12 year old boy that just recently started having seizures exactly a year ago? Until then, everything health wise with him was perfectly normal. He's been recently diagnosed with JME. But, now he's having different seizures. So, we are not sure.

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pamelastewart5 | @pamelastewart5 | Aug 8, 2020
In reply to @debint "My daughter was diagnosed with LGS at the age of 37 after years of "guessing" from..." + (show)
@debint

My daughter was diagnosed with LGS at the age of 37 after years of "guessing" from the doctors. She is one of the more high functioning even though she has 14% brain damage from the DPT shot when she was 3 months old. I feel the cocktails of meds have been worse on her than anything.

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Hello, All,
Thank you, Everyone. I learn so much from reading your posts! Concerning my son, now age 42, diagnosed with Lennox-Gesault Syndrome around age 30 and on Epidiolex for over a year. We don't see much improvement on this drug, which is a great disappointment. He was on Depakote for about 2 years when he was 4-5 years old. It didn't seem to help. I can't recall now if side-effects were a problem. Oddly enough, Dilantin and Celontin (an older drug that our neurologist suggested years ago) have suppressed his seizures the most successfully (but never completely) with the fewest side-effects. He did get gum overgrowth from Dilantin and had gum surgery when he was about 25 years old, but since then the gum overgrowth has slowed. He sees a dentist every 6 months (at least he did, before the pandemic!)
His EEG, normal until age 10 or so, is now slow and disorganized. No focal point has ever showed up.
I think I will ask our neurologist if we can try Depakote again. It has been almost 40 years since he tried it the first time and probably the drug has been tweaked to improve it. Thank you for that suggestion!
We now have our 15-month-old granddaughter (her father is my other adult son) here full time, so I am not able to look at these posts everyday. She is adorable and a busy little bee, so if I don't reply promptly, that's why.
Thank you, everyone.
Gratefully,
Pam Stewart

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