I need some insight.

[AlyssaMarie's_Mom]

Hi Everyone! My daughter was diagnosed with Cerebral Palsy and a "Seizure Disorder" when she was about 18 months old. She is 23 now. She started having seizures as early as 5 months old. She tended to have complicated seizures in that they lasted longer than the doctors were comfortable with. She was put on phenobarb from approximately 18 mos-3 years old. Horrible stuff that drug was. I hated every moment she was on it. Turned her into a little zombie lump on a log. Lost all of her personality . So anyway the drug DID serve it's purpose. She stopped having the seizures and we were allowed to slowly wean her off of it. From that point on, she would average 1 seizure every 5 or 6 years.

Well the seizures are back. It started up again last October. She had a couple of seizures a week apart. Then a couple of weeks ago she had 3 seizures in a 12 hour period. Last weekend again she had multiple seizures in 1 day.

Her neurologist cannot tell me why this is happening. And frankly it kind of bothers me that his solution was to automatically write up a prescription.

The thing that makes all of this particularly stressful is that my daughter is unable to speak. She can't tell me how she feels. She can't tell me how crappy she feels or where she hurts. There are so many terrifying side effects with a lot of these medications and it terrifies me to put her on any of it - if she's unable to tell me if it's making her feel better or worse. I kind of feel that putting her on meds would make the rest of us in her life feel better. They might make her feel a whole lot worse..

Has anyone else experienced a similar situation? Being relatively seizure free for years and years (enough that they were able to have you stop taking meds) and then have your seizures come back with a vengeance years later? Does anyone know why this would happen?

Oh and by the way, I was really freakin out so I asked for an MRI. The doctor said there are no new tumors or lesions. The only thing the MRI showed was significant damage to the left temporal lobe. Which is the brain damage she originally sustained during my delivery of her.

Thank you for taking the time to read this. Any wisdom imparted is greatly appreciated.

 

[Lonewolf]

I've had seizures do what happened to your daughter except back to back to back all day long. Ask about the Carbamazepine drug. Every drug has it's side effects though some worse on others some not. Tegretol is the one you should see if you could get.

 

[Sabbo]

Hello. I know that seizures can change over time.
I've had Simple Partial seizures since childhood. I'd complain of weird feelings, but nobody knew what they were. When I was 14, I suddenly had 3 or 4 Tonic Clonics (none since), & that is when an EEG helped diagnose the feelings. About 16 or 17 years ago, I began having Complex Partial seizures, too.
The frequency of my seizures varies, but I average 1-3 a month.
The medication that the neurologist prescribes will depend on the type of seizure, as well as any other drugs that she's on.

 

[valeriedl]

Meds are just fun aren't they? I've been on so many seizure meds through the 13 years I've had epilepsy that I don't remember the names of them anymore. I was on one that made me a zombie too. All I did was stay in bed. My family had to make me get out of bed to take a shower. I pretty much stopped eating because I just wasn't hungry and mom had to force feed me to eat, usually saltine crackers. I don't know how much weight I'd lost. After being like this for about 4 months we told my neuro and he took me off of it right away.

I have on average 4 seizures a month. They might happen weeks apart, days apart, days in a row or I can have more than one in a day. I have all different types of seizures too. Usually simple partial, complex partial and tonic clonic.

How to you and your daughter communicate with each other? Is she able to write to tell you things? If she can this might help you understand more about what is going on with her.