hello

lisabdcat · #1 09-26-2007, 08:39 AM

Hi, would like to quickly introduce myself. I am the mother of a 19 year old daughter who was diagnosed with E 6 years ago. She has uncontrolled generalized grand mal seizures. She's been on many different medications in the past 6 years, none of which has worked for very long. This past year, she's been in the hospital ICU 5 times due to cluster seizures that just do not want to stop once they get going. She is currently on an experimental med in conjunction with a Boston hospital. Otherwise, she is a normal, healthy 19 year old trying to live a normal life within the restrictions she has. I look forward to meeting people on this forum and to learn better how to cope with the impact that E has on people's lives. Lisa

**Birdbomb** · #2 09-26-2007, 09:47 AM

Welcome Lisa!

This is the place to be for information and support, you might even get your daughter to pop in. We do have at least one Mom and son team (Brain & Steve)

**Bernard** · #3 09-26-2007, 11:59 AM

Hi Lisa, welcome to the forum.

**POSITIVEPERSON** · #4 09-26-2007, 12:51 PM

Hi Lisa welocme to the board. Nice meeting you and your daughter!!!!

I have had epilepsy 41 yrs and ran out of meds to take so tried homeopathy and just recently added the Gard diet so I could drop the last tab of mysoline I was taking. If you have any questions about acupuncture, homeopathy, or the Gard diet feel free to ask me on the board or pm me.

Nice meeting you
Riva

**RobinN** · #5 09-26-2007, 02:34 PM

Hi Lisa - I am a mother of a 15 yr old who has been having seizures for about a year. Seems we are in a similar time frame with our daughters. I do believe you will find some wonderful information here. I sure have.

execwife2002 · #6 09-26-2007, 09:55 PM

Hi Lisa,
i am a mom of a 19 yr. old son who's been having seizures since he was 12 1/2. He generally has nocturnal seizures that are grand mal. He too has been on many different meds and we still continue to search for the right ones. This summer he had a cluster (4) seizures in a row. His Dr. counted it as one, I counted them as 4. Would you be willing to dhare about the experimental meds your daughter is on and what hospital you're using? My son is a freshman in college who is living a normal life within the restrictions he has too.
Marian

Yve · #7 09-27-2007, 04:23 AM

Hi Lisa,

It is brilliant to see so many parents/spousesloved ones on here wanting to get more information and support for themselves, so that they may help their family more. I just think it is absolutely wonderful.

cheers,
Yvette

brain · #8 09-27-2007, 06:51 AM

Lisa!

Glad you're here! And yup, Birdy's
right! My son does come in here
when he's "bored" ...

I guess that means I don't keep him
busy enough! Let's see, the driveway
needs edging, there's weeding to do,
and he's got laundry, and ....

Just what he needs a "Perfect Nagging
Mom"

But honestly, My son has grown up
with having a mom with Epilepsy, and
he knows what to do - and to add a
unique spin to the twist. He himself
has a neurological disability, but does
not have Epilepsy!

He could pass for a Wide Receiver for
a Pro-Football Team!

He's not just protective of his mom but
he's not afraid to spar with his mom
either and we can call each other names!

lisabdcat · #9 09-28-2007, 07:59 AM

Hi Marian, sounds like we have a bit in common. My daughters seizures used to be during the day only, but in the last 3 months, she has started having nocturnal seizures also. The experimental stuff she is on is Progesterone cream. It is a compound that is mixed up at a compounding pharmacy and is not available in regular pharmacies. We live in Maine, but work with an epileptologist from Mass General Hospital in Boston. This is where the experiment is out of. I'm not sure that it's made that much of a difference. She's been hospitalized with cluster seizures while on it, and has many breakthough seizures. But she continues to remain as part of the test for now. It's great that your son is in college. My daughter started college in Mass last year, but the seizures got the best of her and she had to come home. We are hoping to get enough control of them in order for her to start school here locally in January. What is your son on for meds right now? Are they working for him?

**Bernard** · #10 09-28-2007, 10:00 AM

Hi Lisa,

Stacy's doc had her try taking a small dose of pregnenolone instead of progesterone creams to help her normalize her periods. The body turns it into progesterone (or DHEA) as it needs to. Pregnenolone is available at most vitamin stores (no prescription needed).

execwife2002 · #11 09-28-2007, 01:29 PM

lisabdcat,
My son is on 800 mg. of topamax (400mg a.m. and p.m.), 1000mg. Lyrica (400mg a.m., 600m.g. p.m.), and Depakote ER 1000m.g. (500m.g. a.m. and p.m.). He has grand mal seizures while sleeping. Daytime seizures (very few) are breakthrough seizures due to bloodlevels to low. We started with this new Dr. 1 1/2 yrs ago. His name is Eugene Ramsay in Miami Beach, Fl. We live in West palm Beach an hour and a half away (with no traffic). He was reccomended to us by a friend of a friend who is Michael J. Fox (the actors ) doctor. He has an aggressive approach with meds. The past 2 1/2 mo. my son was seizure free, then boom while napping 2 weeks ago he had a seizure. He goes for blood work next week because he's been sick with a sinus infection.
School is a challenge, but he's in a few classes that are very small. Teachers have been very supportive.
Marian