Hi from Australia, just looking for some opinions

[Louise28]

Hi there, I am new to this forum. First a little history, by the way I do not have epilepsy but my children and brother do.
My brother was diagnosed when he was about 10 years, he is now 22, I am not sure of his dosage but he is on Epilim (Sodium Valproate) and Lamictal. I am actually 39, my brother was born when I was 16, I have a sister who is 38, she does not have epilepsy.
My Son was diagnosed when he was about 12, he is now 21, he is on 1000 mg of Epilim daily and 200mg of Lamictal daily.
My daughter was diagnosed at the beginning of this year, she is 18 years old, turning 19 in about a week. She has only had 2 seizures, but is on Epilim.

In the beginning I had no idea what was going on with my son as he had petit mals. But at the time I was unsure what was happening as he would just stop what he was doing and he looked like he was daydreaming. As it was happening many times a day I finally took him to the doctors and the epilepsy was diagnosed, it was not until he started taking the meds that the grand mal seizures started. Over the years we have finally got it under control (I hope) he has been siezure free since Feb 08, his medication amounts were being changed at the time of his last seizure
.
As for my daughter, she was at home (she lives with her boyfriend) in bed when she had her first one, no one can really tell me anything as she was the only one in the room at the time, Her boyfriend found her on the bed and knew that something was wrong.

I guess I am just after a few answers or opinions from anyone.

Why would my daughters epilepsy only show itself now after so many years.?
Is it possible for myself to carry the gene but not have epilepsy?

I sort of figured that it is all on my side of the family as my brother and my two children have it (No sign of it in my sisters children - YET)
I am divorced from my first husband (father to my children) and have remarried. My husband and I are trying to have a baby, we are going through IVF as my tubes are tied and we have a better chance with IVF.
I am worried that I may pass on the gene to any other children that I may have. I have told my Fertility Doc about the epilepsy but he does not seem to concerned. Is it just luck of the draw???

Thanks in advance for any advice.

Louise

[KellyD]

Hi Louise
I'm from Australia too. From what I can tell late onset epilepsy isn't that uncommon. I was diagnosed at 27 as was my brother in law. Nobody I have spoken to (medically) has seemed overly surprised about it. My dr said it would usually show itself by 15 or 16 but not always as was my case. I understand your fear with passing it on, I will be with my next pregnancy too but I don't think there is much you can really do to avoid it. My dr told me that my type of epilepsy wasn't hereditary however my son has epilepsy! Good luck with everything.

[brain]

Folks from Down Under!



Kelly is absolutely correct, it isn't uncommon for
those "late onset" to appear, nor is it uncommon
for those who had Epilepsy as a child, then "outgrew
it" - then suddenly years later, it just appeared out
of nowhere (as if it went into remission).

Checking out the EPILEPSY 101 would be of
benefit to you to give you a head start here in CWE!
Make yourself a home and so sorry that it had to
return! We all hate "E"!

[skillefer]

Hi Louise! Welcome to CWE. Well, to answer your first question, as to why your daughter's epilepsy just appeared, honestly I have no clue. Epilepsy can appear at any age. My great uncle on my mother's side had a seizure when he was in his 40's. And nothing after. Mine is most likely due to a head injury I got as a kid...although I could have a lower seizure threshold due to genetics. We don't know for certain, and probably never will. Your daughter needs to try figuring out what triggers her seizures. She should be keeping a log of everything she eats and drinks, how much and when, as well as how much sleep she gets every night and any stress that she's under. Then she can look to see if there is a pattern. For example, was she really stressed out the first time she had a seizure? Was she worrying about bills or anything? Had she eaten? I'm more likely to have a seizure if I don't keep my blood sugar levels steady. Had she gotten enough sleep? Teens tend to short themselves on sleep. See if she can find a pattern. Was it near her time of the month? Some women are more likely to seize near their TOM. The thing is, if she starts keeping a log, she can see if there's a pattern. If there is a pattern, then she can work to make any lifestyle changes that might help minimize the chances of her having more.
As to your fears about passing it on, there's no guarantee that you will. Remember, you're working with two sets of genes....not just yours. So there's no guarantee that your child will or won't have seizures. The thing to do, is to just love any children you might have. Be informed about seizures (check out the epilepsy 101 thread brain suggested), and be loving and supportive. In the end, that's all any of us can do right?

[Bernard]

Hi Louise, welcome to the forum.

Why would my daughters epilepsy only show itself now after so many years.?
Is it possible for myself to carry the gene but not have epilepsy?

People can start having seizures and be diagnosed with epilepsy at any age. There are many members here who didn't start having seizures until their 20's, 30's, 40's, 50's, etc.

I'm not 100% convinced that there is a single gene (or pool of genes) responsible. I believe that diet and environment play a huge role.

Good luck with your family planning. Please make sure you are taking prenatal vitamins/minerals.

[sixpack]

welcome to the group

[Kansas Educator]

Welcome Louise. I am 53 and was only diagnosed about a month or so ago with partial seizures. I do believe, in retrospect, that I've been having them for many years but had no idea what they were.

I don't think there's an age limit on when this stuff can rear its ugly head.

[Louise28]

Thank you all so much for your replies.
Luckily my daughter seems to have her epilepsy under control and has not had any seizures since the beginning of the year. My son also seems to be finally under control after 9 years of trying. He still cannot drive, but we are hoping if he can stay seizure free until Feb next year, then there is a chance he will be able to drive, poor kid has not even learnt how to drive yet.
Now I just have to worry about what I am going to pass to any future children I may have.

Louise

[Meetz1064]

welcome to CWE, Louise.

E, as we call our *beloved blessing* around here came to be my *friend* at the age of 13 months. Now, it shows up at all sorts of ages.......tho it's more normal to show up as a kid, I've heard of people suddenly being diagnosed with it in their 70s. No joke.

There is something to be said for diet and environment, Mr B is right about that. Although there are some families that have hereditary E in them, (I know of a couple) it's not as common as you may think.

And don't bother worrying about what you may or may not pass on. It's not worth the stress you'll bring on yourself. I have tonic clonic E. And, I have 3 kids. One is a special needs kid, who is a high functioning autistic. The other 2 are normal. They've turned out fine. Really, just don't bother worrying.

Take care!

Meetz

[Belinda5000]

Hi Louise and welcome to the board.
I was 2 when I was dx'd and I'd 46.
I was delivered by forceps which caused my seizures.
I've never been able to drive.I have refractory epilepsy.
I have a VNS.
My grandmother had seizures till she had her first child.
I have a first cousin who has epilepsy never got controlled and her son who outgrew it.
They inherited from there father no blood relation to me.
My seizures never stop they've increased to much as I've gotten older.
Belinda

[Aussie69]

Welcome from another new Australian.
Reading you're families story I see a lot of familiarities to myself. Age of the onset of seizures & the daydreaming effects as a warning to onset of seizures.
Reading skillefer's reply I wholeheartely agree. Items such as Sleep and stress can be very important Finding pattern's on one's lifestyle and changing them to limit the onset of seizures can be as much as important as the medications prescribed.
As the case of being gene related - Don't know. Have heard it being the case and I'm sure this forum will give you much valuble information on this being the case.
Good Luck in finding the information you seek.

[ddr1166]

Hi Louise - my husband had his first seizure at age 45 yrs. We still aren't sure of the cause (sometimes I think some people never know the cause), but we think it was a head injury or possibly febrile (caused by high fever) seizure he had as a 2 year old child. Looking back, he says he thinks he may have had more mild ones through the years - a kind of "spacing out" feeling, but never thought much of it because it always passed and he felt fine. His first one was this year - full grand mal - and then the next two were much milder - we're hoping because the medication is starting to work. I think the whole medication process (from what I gather) is a trial process - meaning, you have to try different things to see what works, and it's different for every person. Good luck and don't let it slow you down from living your life. - D