Kayakmom Ex2? - Epilepsy Message Board

LisaGuthrie · 06-10-2004, 03:53 PM

Hey you,

When did you join the VERY small ranks of as Mommas with 2 E kids? I don't remember reading this before...

It's a trip, I'm here to tell you!

Jenna phoned from Vegas this afternoon and asked if Carbatrol (sp) can cause a person to want to read...

Don't remember seeing that listed as a side effect LOL!

I know that her dad wouldn't be as dilagant in seeing that she got her meds on a regular schedule. And the neuro didn't want to take any chances and placed her on the extended rather then the normal Tegratol. She is 3 days into the new med, so far so good with the exception of this strange desire to read all day.

Jenny is not (or wasn't) a big reader. She had some LDs early on and basicly had to learn to read all over in the 6th grade. We had her tested and she had visual tracking issues. She would read 4 words and skip the 5th across the page and she would read 3 lines and skip the 4th going down the page. She was a slow reader from the get go. But, all I had to go on was what she was doing out loud and it wasn't as big an issue reading to someelse, it was reading to herself she lost the information. Brakes my heart when I remember all the times I would say... Jenna, you know this information why didn't you get a better grade. And she would look at me with these big, sad, brown eyes and say she didn't know...

She was missing parts of the instructions, and a big part of the content...

Off subject - sorry about that! How old is your second child with E. Same symptoms? If it makes you feel better, Jenny took the diagnoses of E pretty good. She had seen some rough things with Jake and knew that we would be right there for her as well, like we had him. She had even coached her girlfriends on how to deal with a seizure, right down to what we always say to Jake, "Come on back, I'm right here - Please don't stay gone to long. Do you hear me counting, you've been out to long, come on back now, trips over"

(((HUGS))) to you girl. Don't forget YOU Mom! It's easy to let your care slip...

Let me know.

Love and light to all our children,

Lisa and kids

kayakmom · 06-11-2004, 02:41 PM

Thanks Lisa, We had questions two years ago about Anna, and a normal EEG set our minds at ease for a time. THe neuro then thought she may have a sleep disorder and eventually we would test for that. Fast forward 2 years, she came home from school last fall and described a simple partial seizure(got into the car and grilled her brother on exactly what do they feel like and told him what happened. ) She has had some myoclonic jerks as well, but until i saw her have a HUGE one the end of March I was not worried. That same weekend she had a nocturnal seizure and I had a hard time staying composed.
(Sam has mostly nocturnals and she was SO post ictal after.)

Took her to the pede saying it may be this sleep disorder, we need a sleep study. Pede said, nah, I do not think it is that or seizures but we can run an EEG , they are cheap. I called the neuro who saw her 2 years ago/

EEG came back abnormal. She is on the med Sam used to be on and treated, in part because of his history although he remains untreated. (Very weird place for mom!!)

We are still seeking answers for Sam. He has a new local neuro who cannot do many tests. Will see an E specialist next month and redo all testing that the last place messd up, lied on reports etc...

She is taking it well. She did loose a babysitting job recently, long story. Ignorance of E abounds. She is doing well with meds, saw an immediate improvement in concentration and learning. Her brain had been missfiring for a long time.

She is very photic and hyperventilating sensitive. She has not had myoclonics since hitting therapeutic dose. We have not seen a nocturnal either for 5 weeks. She is on the mild end of things, but it is all still a shock. She has primary generalized E< he has partial E, refractory to treatment.....

Good to hear she is on a reading kick!! Funny how that is. Maybe her brain function is improving with the med. Sam goes up and down with reading depending on how many seizures. Just cannot do it much when he has a few a week.

wokstar · 06-12-2004, 01:11 AM

very interesting to read you guys..or i should say moms. haha

I was wondering though....is there a history of epilepsy in your family? Do any of you have seizures as well?

I have no family history....i seem to be the lucky one

. I just really dont want my kids to have epilepsy....but iguess it is the risk one has to take.

kayakmom · 06-12-2004, 07:51 AM

In our case, my hubby had an uncle who had severe grand mal E (over 50 years ago he died)...but his was considered a birth injury, therefor non hereditory. My son has partial e, my daughter primary generalized so they are not considered to have a genetic linking it. I have a lot of similarities to my daughter and her neuro wants me to have an EEG< but have not ever had a seizure that i know of....(had some things very similar to sons partials that are part of my fibromyalgia, though)

Genetics can lower your threshold, making a seizure more possible when other triggers present, but is not always occur.

siblings only have a 2-3% chance of developing epilepsy. I think that is the same for a parent and child, depending if there is a clear E syndrome. Some of the syndromes are clearly genetic (like Tuberous sclerosis complex, lennox Gastaut(i think), )

LisaGuthrie · 06-14-2004, 12:52 PM

Hi Wokstar,

Love the screen name BTW...

There are cousins on both my side and hubbys side of the family that have E. But neither of us do. The neuros are trying to find a genetic study for us to join. I have 3 kids, 2 with my X and 1 with my current husband.

One of the neuros has a therory that E can and is carried geneticly. It is his feeling since only 1 of my older kids has seizures and she was very easy to control (first med did it) he feels that I was the only genetic carrier to her DNA. This also made it less likely that my oldest would develop it since only one parent in the union had that trait. Jake on the other hand has had a horrid time getting seizure control (tons of meds, lots of changes in dosage etc) it's his feelings that both my husband and I brought a genetic trait to his DNA, making his worse over all...

But since such a small % of the population has E there isn't a lot of money being spent to study this area. If they find it I think it's going to be an accident with some rat in a lab during testing for something else!

It's just one Doctors thoughts and unproven... so don't go and quote me to the world

Hope that helps!

Lisa