@pamelastewart5

I never took it but Laurie @lsittll did. Here's a link to a discussion she started.
Zonegran can potentially weaken bones and cause kidney stones. Has Caleb had his vitamin D checked? Living so far north it would be worthwhile to check it, in my opinion.
https://connect.mayoclinic.org/discussion/zonisamide/?pg=1#comment-306528
Best of luck to you & yours,
Jake

Yes, I take Zonisimide (and 1 Lamectal at night )for 20 years 100 mg
I am on a rather large dose of Zonisimide 5 at night 2 in am
I also take divalproex PM- Started divalproex-Zonisimide -Lamectal this winter I am doing excellent. I use to just take the Zonisimide-Lamectal before adding divalproex.
I take vitamin D also My Dr use to have me on 50,000 now I am on 10,000 weekly
Also regular bone density tests.
The main thing is to find the right medication or combination of medications for you.
I too was on Dilantin, Celonton, Felbatol, valoric acid years ago.I eventually was weaned off of the others a put just on these two.
I am not familiar with Epidiolex so I can’t address that but I know cutting back or adjusting meds as they are tolerated per individual and starting new meds is one of the most difficult-scary things…
I will be thinking and praying for you and your son. Hugs

@becca13
Just curious if you have balance, memory, fatigue or other side effects.
Jake

Hi @pamelastewart5
I take a 100% CBD medication (medical cannabis) comparable to Epidiolex. It has been the best medication I have taken in those 4 years of treatment of my epilepsy (temporal lobe). I have heard of people with Lennox-Gesault Syndrome who treat with Epidiolex having had good results. Try to talk to them. Adapting to the best medication needs patience and persistence, it took me a bit more than 2 years, but it was very worthwhile. I would do the same if I were again in the same situation I was in 2019, 2020, and some months of 2021 taking AEDs which has terrible side effects on me and my life quality.
As I have mentioned in many recent posts in our group, starting to be treated by an epileptologist (a neurologist who is specialized in epilepsy) has made a great difference in my treatment and life quality. I am with him since 2021 and have a life again 🙂
Stay strong in your battle together with your son. My hugs to both of you!
Santosha

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 . . .

Hello pamelastewart5 !

I have taken Zonegran (Zonisamide) and found it to be the best medication I have ever taken. I have uncontrolled seizures for 56 years. I have had many seizures. Almost two years ago I began taking Zonisamide,
I have been seizure free since I have taken Zonisamide.