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My 16yo son has Lennox-Gastaut - recently diagnosed after over a decade of searching for answers. I’m curious about what we may expect as he gets older, and the kind of ongoing support he may need. If anyone is willing to share their experience, I am all ears.
Here is the link to the US National Library of Medicine to learn all that is currently available about Lennox-Gastaut Syndrome and the available treatments and what lies ahead in living with it.
https://medlineplus.gov/genetics/condition/lenn...
And here is additional information from the Epilepsy Foundation:
https://www.epilepsy.com/learn/types-epilepsy-s...
These 2 of the best sources of the up-to-date information on Epilepsy in the world.
And have you read this article from the Resources section of MyEpilepsyTeam?
https://www.myepilepsyteam.com/resources/lennox...
I am actually an epileptic who takes Onfi (clobazam) for my seizures, and it’s the only thing that has ever controlled them. I don’t know enough about Lennox-Gastaut to give any advice, but I am sure there are resources on this site to go through to find answers.
I hope you and your son have a very good, and seizure free evening.
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