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.
Kerry