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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Welcome new members @kneubauer1 @janna520 and @tracy612.
@kneubauer1, please meet fellow "epilepsy moms" @tparks6, @patrassi, @clairesmom, @mmas, @ketomom, @hermsenk, @inkdfrog, @krd94 and @blath2000. You can read more about them in these discussions:
– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY
– Ketogenic diet for children http://mayocl.in/2j4h7zQ
Kneubauer, can you tell us more about how the CBD oil works for your son?
Janna, you might also be interested in this discussion about concussion:
- Adult Life after a Traumatic Brain Injury (TBI) https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/
Tracy, I'm glad you found this group too. When you sense a seizure coming, and smell dark dirt, do you have enough time to make yourself safe? What tends to trigger the seizures?
Replies to "Welcome new members @kneubauer1 @janna520 and @tracy612. @kneubauer1, please meet fellow "epilepsy moms" @tparks6, @patrassi, @clairesmom,..."
Greetings, when i smell dirt, i usually have meer seconds to get safe..When i first began seizures, i caused some brain damage. Now any highs or lows,.(extremes) seem to bring the seizure on,,,but it also seems to work itself up over a few days. I dont sleep well and I loose balance previous to a seizure. If i can answer any more questions, plz ask. I dont have a nero dr right now, im thinking of coming to Mayo...This has caused me to be on disability, and I think Im not getting benefits from my meds anymore...1000mgs of Keppra, 2x daily...thank you for what you are doing..tracy johnston
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@colleenyoung: We live in Wa. State, so it's a rec and medical legal. We currently get RSO oil that is super concentrated and dilute it in grapeseed oil to make it easier to dose. But from what I understand (which is very little) it calms his brain down. He has a pretty high dose of CBD but low THC, and it works best that way. Hemp oil didn't do much. There has been a lot of trial and error. We had heard it could work for epilepsy and his Neuro said go ahead and try it but he can't really advise much since there is so little research. He was having break through seizures at least once a week when on his other meds. He hasn't had any for 3 weeks and that one he did have was cause he was sick(fever) so his threshold was lower. Sorry it's not more helpful. Since he has epilepsy from a genetic disorder (OPHN) we don't have much hope for him to "outgrow" the seizures.
I will say since coming off of the pharmaceuticals, his cognitive skills have grown immensely, went from 3-4 word sentences to long compound sentences. And he is retaining more information so not as much re-teaching.