New here but not New to epilepsy

[Laina_Bravo]

Hi,... I apologize for this being long!

My name is Laina i'm 20 and i've had epilepsy on and off for 15 years. I first remember having seizures when I was 5. I use to tell my parents I shook really bad at night and they just kinda blew it off till 2 years later I had a seizure while my parents were on vacation. I after a second seizure I got put on tegretol. I was diagnosed with complex partial grand Mals. after 4 years I failed tegretol, we than tried depekote which made me gain 40 lbs in one month. I than got put on lamictal which made my migraines worse, than to topemax which made me sleep through my 7th grade year. I at this time took 3 trips to the epilepsy ward for long term eegs which proved normal and i was taken off of my medications. I was seizure free from the time i was 13 to i was 18.. I than got the best present ever My seizures came back with fury. I started having grand mals again. but instead of having 1-2 a year I was having multiple ones a day. I got put on some med I can't remember what but i reacted with it. In November I got my service dog bravo who is a seizure detection dog, I was than put on keppra and got an addition of gabapentin and now i only have occasional break out pettie mals as long as i take my meds don't party sleep and keep my self not stressed out. I wouldn't be alive today without my seizure dog he has gotten my head out of the pillow/bed more than once along with grabbing people to come and be by my side. So yeah.. That's my story lol I'm wondering though are there any moms on here who have epilepsy and did your children inherit it? My fiance and I are ttc, I just fear having to watch my baby like a hawk for seizure symptoms.

 

[karenb68]

Hi Laina, and welcome! I'm mom of a 12 yr old who just started having seizures in April, so I'm new to this and you already know way more than I do, but I still want to welcome you. This is a great group here
I'm so glad you have Bravo. I didn't want to mess with a dog, but had just told hubby in June that if it would help, I would try to find a trained dog for our daughter. Then lo and behold, a dog gets dumped practically at my feet a few weeks later. I thought God was being a funny guy again, because this dog didn't impress me at first as being too swift. But it turns out this little guy has seizures himself--what's the odds? Hubby says I should have been more specific when mentioning we needed a "seizure dog" LOL. He has helped her so much, though, with some of her depression and what not. I have noticed with my daughter that each TC comes on a day when she's sleep deprived, too.

 

[Laina_Bravo]

Thanks Karen, I am horrible about the sleep deprevivation. Now that I don't have a bed time my fiance and I tend to stay up to late and I always wake up on the same time every day. My dog came by accidently too. My fiance was actually looking for a ptsd service dog and picked out this little fuzzy black german shepherd who wasn't getting picked because he was clingy and whiney. And this dog wanted nothing to do with me but would come and whine at me and tug at me sometimes we started tracking it and it always happened before a seizure. We started paying more attention to when he whined and things like this and he was giving me a consistent 2 hour 40 min and 20 min warning. So like a good man my fiance gave me the dog and we've been training him as a service dog since he is 8 weeks out for being done with his major training that starts specialized training and in december he can be certified as an official service dog. Most seizure detection dogs actually turn out to be peoples pets originally. It's really hard to make a cookie cutter detection dog that's why the dogs you get from most training places are seizure recognization.

 

[Endless]

Laina,

Hello, and welcome!

Here's a link to a site that discusses genetically caused seizures and the odds involved.
http://www.epilepsy.org.uk/info/inheritance.html

There's so much we still don't know. There are a lot of studies going on right now to identify more genetic markers for epilepsy.

We think my father had temporal lobe epilepsy. Hard to tell because now he is deceased from an unrelated cause, and when he was having seizures nobody in the family knew that's what they were. We just have family memory to go by (like jamais vu, intense fear episodes, complex partials where he wasn't conscious and wouldn't answer but did and said pretty nutty stuff, apparent auras, etc.) I have temporal lobe epilepsy, too. Right now infractory, but I hope we find the right meds soon. We are close - I'm down to one seizure every 1-2 weeks, down from 2-3 per day.

Don't worry, okay? Here's a quote from that website:

Despite the slightly increased risk for seizures in children of parents with epilepsy, you may be reassured to find that the probability that your child won't have seizures is much higher than the probability that your child will have seizures. Even for parents in the highest risk categories (for example, women with epilepsy, people with absence seizures, or people who developed epilepsy at an early age), the probability that your child will not develop epilepsy is greater than 90 per cent.

 

[douglas]

i am on keppra as well. your story is slightly similar to mine. i was seizure free for some years, then they came back, one neuro once told me he had a patient who was seizure free without meds for 20 years and then out of the blue she started having siezure's again. so it's not uncommon of rare to have them come and go in a lifetime.

anyways, about kids. i have 2 children. they both look exactly like me, (my wife is dark skinned and dark haired and i am pale white and blonde) so both kids seemed to have taken to my genes and both my kids are healthy and neither of my kids has my condition. no guarantees that it wont come later in life and no one knows what may or may not happen in the future. but for now, all are good and healthy.

kids are a wonderful thing. if you are considering having them and raising a family, don't for a second try to second guess yourself or consider not having them because of concerns of your condition being passed on. the happiness your children will give you does more healing than AEDs, meds, vitamins and religion 100 times combined.

 

[Bernard]

Hi Laina, welcome to the forum. :hello:

... I'm wondering though are there any moms on here who have epilepsy and did your children inherit it? ...

Almost everyone on my wife's family tree on her mother's side had epilepsy. So far, our kids have not exhibited any seizure activity. We are mindful that they are at more risk than the average though. We try pretty hard to ensure that they eat well, avoid common seizure triggers and maintain a good sleep routine.

 

[Laina_Bravo]

thanks everyone! that already makes me feel alot better. My neurologist told me when i was little i got epilepsy because i had two parents who had migraines and I than worried with my fiance and I having a migraine and epilepsy mix with a migraine we were more likely to get epilepsy too.

 

[Bernard]

You might find these threads of interest:

http://www.coping-with-epilepsy.com/forums/tags/migraine.html