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Top 10 Search Results for "getting the best care for your child with dravet or lennox gastaut syndrome a parents guide"

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Suicidal Only Right After A Seizure
A MyEpilepsyTeam Member asked a question 💭

Normally i dont deal with severe depression or clinical depression. I have my times here and there, but its usually after major events, and it usually goes away fairly soon. But i have been told by other people that theres been a couple of times where right after a fairly big seizure i become suicidal. Not after every seizure, just couple here and there. Those suicidal thoughts/tendancies go away like after a day maybe two or three days at maximum ( depending on severity of seizure) than im… read more

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A MyEpilepsyTeam Member

I am not thinking about suicide. I made a promise to my mom and God that I would never consider it. I am ok with the depression now. Thanks for your message@

What Is It Like To Live With Lennox-Gastaut As An Adult?
A MyEpilepsyTeam Member asked a question 💭

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.

A MyEpilepsyTeam Member

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… read more

Lennox-gastaut Syndrome Variant
A MyEpilepsyTeam Member asked a question 💭

What does it mean if your doctor tells you your on the spectrum of lennox gastaut syndrome variant

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Are There Groups For Caregivers Here In My Epilepsy Team?
A MyEpilepsyTeam Member asked a question 💭

If there are, where do I look and how do I connect? Thank you, parent of a fourteen year old daughter with Lennox Gastaut Syndrome, ADHD, autism and more.

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A MyEpilepsyTeam Member

Contact the Epilepsy Foundation. I am waiting for a new place to live, I can’t live alone, and I’m too old to keep living with my parents. So assisted living is the answer for me. I am waiting for… read more

How Many Rare Seizure Types Of Epilepsy Is It?
A MyEpilepsyTeam Member asked a question 💭

Self I'm kinda curios on how many rare seizure types there is. Myself have a rare type of epilepsy. And I just wonder, can some of you guys tell about different rare seizure types?

A MyEpilepsyTeam Member

Oh, sorry to hear. But hope or as we all do. I just hope that everyone could just be cured I always felt diffrent around others. But very well. Happy new year 2021!

Anyone With Complex Partial Heard Of Gabitril?
A MyEpilepsyTeam Member asked a question 💭

I just recently heard of it. Im kinda between neurologists so id have to bring it up at the follow up if im interested. Im currently on 450mg trokendi, 250mg vimpat, 200mg Xcopri for epilepsy, and other things not related to my epilepsy.

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A MyEpilepsyTeam Member

I tried it for a year w/ chews. It helped but it wasn’t complete!

Have You Tried Medical Marihuana?
A MyEpilepsyTeam Member asked a question 💭

I have had seizures since I was 16 years old, and now I am 54. I believe that medications have affected me in many ways besides memory problems, I have a lot of anxiety and paranoia. I have even thought on quitting my job because of how bad anxiety has gotten. I have taken lemotragine for decades now. I am tired of doctors saying to me that lemotragine is a mood stabilizer. Do not know what to do to control my anxiety. I have been thinking in medical marihuana but they tell me that will affect… read more

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A MyEpilepsyTeam Member

Thank you

Should I Continue Seeking Treatment From An Epilepsy Level 4 Center?
A MyEpilepsyTeam Member asked a question 💭

Hi everyone, I wanted your thoughts about what your would do if you were in my situation. I moved about a year ago to Central California and have to find a new neurologist. My existing one from Southern California is good but he is too far away now. The dilemma I'm facing is whether or not I should bother going to an Epilepsy Level 4 Center in the Bay Area. I've already had surgery twice, and probably wouldn't go for third one even if there was an opportunity in hopes of controlling my seizures… read more

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A MyEpilepsyTeam Member

Kevin I black out when I have mine and can’t talk don’t know if it’s similar but always been on meds no surgery My doc isn’t the best but life goes on. Just got my meds adjusted hope it works

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Epidiolex
A MyEpilepsyTeam Member asked a question 💭

Where can I get this specific kind that is specifically for epilepsy..

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member epidiolex is a pure cbd oil. so dose a lot vitamins like https://koicbd.com/. the only difference is one is drs rx it and the other is online or (for my state) vitamin shops… read more

If I’ve Been Diagnosed With Epilepsy But Haven’t Had Seizures Since On Meds And Cutting Back On Them Do I Still Have It
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Yes, do not cut back or increase your dosage without consulting your GP. You are risking the seizure being worse, i think. Your doctor will know better. They don't always pedal the medication for… read more