Badges (2)


Member has chosen to not make this information public.

Groups (1)


Member not yet following any Pages.

Posts (22)

Sun, Dec 1 6:21pm · Atonic Seizures or Drop Down Seizures in Epilepsy & Seizures

I am sorry that your daughter developed Atonic seizures. They are so worrisome because of the sudden hard falls. My son, now age 41, started having seizures at age 3. Up until that time, no delays or problems. After about 2 months of having a grand mal seizure every 2-3 weeks in spite of Phenobarb and then Dilantin, we took him to a pediatric neurologist at what was then called Children's Memorial Hospital (in Chicago, where we live). She put him on Tegretol and a few weeks later, he started having drop/Atonic seizures in addition to the grand mal seizures, which continued and became more frequent. He would drop backwards very suddenly while fully awake, as if he had been shoved hard. After a bad fall on concrete which required stitches, we got a helmet for him. The Atonic seizures continued (1-6 a day), but at least his head was protected. He was then hospitalized for several weeks in a fruitless attempt to uncover the underlying cause of all his seizures (which was never found). His EEGS had been normal, and while hospitalized he had quite a few. Suddenly the neurologist "saw something" on a new EEG and she abruptly yanked him off Tegretol and started Depakote instead. She told us that Tegretol was contraindicated with his type of seizures. Within a few months, the Atonic seizures tapered off and then stopped completely, and he has never had one since. He's been off Depakote for many years, and his seizures–except for the Atonics–have been when he is asleep. He still has an grand mal seizure about once a week, usually in the early morning hours. Medical Marijuana seemed to decrease the seizures.

Thu, Nov 21 12:03pm · SYMPAZAN in Epilepsy & Seizures

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!

Tue, Nov 19 5:30pm · SYMPAZAN in Epilepsy & Seizures

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!

Mon, Nov 18 8:40pm · SYMPAZAN in Epilepsy & Seizures

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.

Mon, Nov 18 8:37pm · SYMPAZAN in Epilepsy & Seizures

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.

Wed, Nov 13 6:18am · SYMPAZAN in Epilepsy & Seizures

Has anyone tried SYMPAZAN? If you have, did it help? What about side=effects? Thanks for any info.

Sun, Nov 10 9:45pm · Lennox-Gastaut syndrome (LGS) diagnosis in Epilepsy & Seizures

Hi, Everyone, I was wondering if anyone has tried the medication SYMPAZAN? If you have, did it help and were the side-effects a problem? Thanks!

Sat, Jul 27 4:56pm · Epidiolex in Epilepsy & Seizures

I always appreciate Jake's input and knowledge. Thank you, Jake!