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Has anyone tried SYMPAZAN? If you have, did it help? What about side=effects? Thanks for any info.
Hello, @pamelastewart5 – Here is some Mayo Clinic information about the medication clobazam (Sympazan) https://www.mayoclinic.org/drugs-supplements/clobazam-oral-route/description/drg-20075333. Please note there is a section especially about side effects, which you asked about.
Hoping that @jakedduck1 @hopeful33250 @jenniferhunter @crstyday40 @patrassi may have some input on this medication.
Wondering if your son's doctor is looking at clobazam (Sympazan) for your son's treatment?
I am not familiar with this drug but I see that it is primarily used for seizures.
Have other anti-seizure drugs been tried previously with any success? How long has your son had a seizure disorder?
My son's seizures started at age 3, and still continue. Now he is 41 and has been diagnosed with Lennox-Gesauly Syndrome. He has been on many different drugs over the years. He stays on Dilantin and Celontin and others are added and then removed when they don't help. He has been on EPIDIOLEX for a few months. He had fewer seizures but is very drowsy. A few weeks ago, following a bad cold, he started having daily seizures again for 2-3 weeks. Now he is having fewer. His neurologist is willing to try new drugs in an effort to help him.
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Thank you for the info about Sympazan. It sounds like the sedatation might be too much for him, since he already dozes off often during the day.
I wrote earlier but probably forgot to hit “post reply.”
For those who don’t know SYMPAZAN is clobazam which came out in 2011, I believe, but instead of pill form it’s a small film that dissolves on the tongue.
Has Caleb ever taken Clobazam? Hopefully the drowsiness from the epidiolex will diminish in time if he continues to take it. I wonder if he could take both due to the sleepiness side effect of both Sympazam & Epidiolex.
I’m not sure if I have this right but Mayo Clinic has some type of device that cools the brain or the seizure focus to stop seizures. Not sure if it’s implantable or only used during brain surgery. Has Caleb ever been to a level 4 Epilepsy Center and seen an Epileptologist?
Caleb has only been treated in Chicago. We tried many alternative treatments when he was younger, including homeopathy. He was on the ketogenic diet for 6 months when he was 4. It helped for a few months and then the seizures returned full blast. That's been his usual pattern with most treatments. His EEGs were normal for many years, but for at least the last 20 years have shown diffuse slowing with no focus. I do thank you for your interest and for your blessing. Much needed and appreciated!
Not sure if your interested in going to an Epilepsy Center but here is a list of Centers throughout the U.S.
Hi, Jake and All, I am glad to have the list. It is definitely something to think about. You–and everyone on this site–are always so kind and helpful. It means a lot. Thanks!
Hi, @pamelastewart5 – are you still considering the clobazan (SYMPAZAN) for your son, or are you and his doctor looking at something else at this point?
Hi All, Right now my son is on Epidiolex. It is not as effective as Medical Marijuana was for him. However his neurologist wants us to give it a good try before we try a different medicine. It is covered by insurance, and Med. Marijuana was not. His seizures are cyclic, and on Epidiolex he still has about one "bad" week a month, during which he has up to 5-6 seizures. To put his disorder in perspective, this would have been a wonderful improvement fifteen years ago! (he is 41 years old and diagnosed a few years ago with Lennox-Gestault Syndrome).
I’m very sorry to learn the Epidiolex is not as helpful for Caleb as hoped. Has the neurologist mentioned why this isn’t as helpful as the medical marijuana? Have you noticed that his seizures are any less severe than before starting the Epidiolex?
I believe he’s been on it nearly 8 months. What is his dose now?
Hi, Jake and Everyone,
Caleb's current dose of Epidiolex is 4 ml. twice a day. He dozes off at times during the day. He seems pretty cheerful when he is awake. Last few days, no seizures.
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