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keeg1010 (@keeg1010)

Seizures/how to dose CBD/medical marijuana

Epilepsy & Seizures | Last Active: Mar 22 7:04am | Replies (66)

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Hi Santosha,
Thank you for the explanation on the way CBD leverages AED's. I did not know that. I am so glad that the CBD is working for you and I am hopeful that I can talk with our doctor (we have a follow up appt on 8/26) to see if I can get some dosing information or if she can point me in the right direction. I agree with you…makes no sense to say she wants us to start CBD/medical marijuana and then give no guidance. I definitely wouldn't start an AED on a whim, guessing the dosage. I'm really hoping we can get into Mayo. Can I ask when you started having seizures? My son, Keegan, started late last year (as I said). Since he was born 3 months early and oxygen deprived at birth, we knew there would be some issues. He had yearly EEG's and MRI's. EEG's have always been normal. His MRI showed a slightly irregular and atrophic left hippocampus (suspicious for possible mesial temporal sclerosis). But, that MRI result has been there since birth and has not changed so even though we knew he was higher risk for seizures, we never had any until he turned 23. Everything else on his MRI, CAT scans, and EEG's have been normal. I saw the post with @lhoward about the recent studies related to seizures and gut health and am very interested in learning more. Keegan has had GI issues since birth. He's had at least 15 endoscopes and has been diagnosed with reflux, gastritis, peptic ulcer, pancreatic insufficiency, eosinophilic esophagitis, gastroparesis, as well as a "viral insult" in his gut that could not be identified but always negative for H. Pylori. I have to wonder if there is a tie…prior to his last seizure, he had 4 days of vomiting (no explanation why?) and then 2-3 days later, he had his seizure. Do you have any gastro issues that you've been dealing with? I would love to do a zoom with you and chat. Look forward to talking soon.

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Replies to "Hi Santosha, Thank you for the explanation on the way CBD leverages AED's. I did not..."

Hi Kerry!

Sure you can ask! I started having seizures when I was 12 years old (I am 50 now).

Possibly, my epilepsy is due to the intake of medications of my grandfather at his place when I was 5 years old, having had a convulsion and staying unconscious at the hospital for 7 days. Back home at that time, my mother visited more than one doctor. Everything seemed to be normal without consequences from this medical event. At the age of 12, I have started to have some strange experiences that lasted seconds, which today I know were seizures. I have repeated the EEG and the results were normal (today I know that a normal EEG does not rule out the possibility of epilepsy). Up to 2017, I have had a normal life with around 5 seizures a year, with no idea that I had epilepsy. But in 2018, after a stressful and very demanding 2017, things started to change with sleep disorders and an increase of those “strange experiences” (seizures). My epilepsy has evolved.

It makes sense to me to believe that there is a tie between gut health and some kinds of epilepsy. Otherwise, why does the ketogenic diet bring good results to some people with epilepsy? I believe my epilepsy is not linked to my gut health (but to the event at my grandfather’s house), even though I became quite sensible to fatty foods after I had hepatitis A at the age of 22 (intake of oysters). In your place, based on what you have shared here, I would investigate if there is any relation between your son’s GI issues and his seizures.

Kind Regards