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Thank you, Everyone, for your helpful comments. My son has taken Epidiolex for about 2 years. Before that he took Medical Marijuana for several years. Both are helpful, but he still has about 5 seizures/mo. when he sleeps. Here is an update on what has happened in the last week and a half: He has been on the Zonegran for a week and a half and he seems very drowsy and lethargic. Also, he has stopped bearing weight completely, which is worse after his dose, given at bedtime. This is a big problem in his daily care. He only weighs 137 lbs., but when he is dead weight it is hard to get him out of bed and to dress him, etc.. We have a call in to the neurologist. We don't think he can stay on Zonegran. Also, he had a seizure 2 days after we started the med. Our neuro told us that Zonegran would take effect after the first dose. So . . .
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Hi @pamelastewart5
I am sorry to hear all that about your son. Some AEDs can cause seizures in some people. I had my first convulsion (my seizures are focal simple and complex) after taking Trileptal. This has happened because Trileptal has lowered my sodium level, which has led to this convulsion and my doctor at that time has stopped it immediately. But, I know of other people that take Trileptal and are doing just fine. It is very particular to every person! Has the sodium level of your son been checked lately? My current doctor asks me for blood exams every 6 months.
For me, the experience of AED treatment was a scary one, but this is very particular to me, I am a very sensitive person to medication since my childhood. I have read that about 30% to 40% of people with epilepsy have refractory epilepsy, and I am one of them. People with refractory epilepsy have difficulties with AEDs treatment, they either cause more seizures in the person and/or cause terrible side-effects. CBD/Epidiolex is the medication that has helped me the most. I did not become seizure-free, but it has reduced my seizures, softened them, and made me feel better and myself. Together with this medication, I started a gluten-free diet more than one year ago and this has also had a very positive impact on my seizures, reducing them greatly. Today, I have 2 to 3 seizures a month (focal complex seizures).
Santosha