Hello, about us*

[joan]

I am the Mom of 2 children with epilepsy. Genetic. Shocking to find out after them both "seemingly" fine the first 15 years of both their lives.

My son at 15 (he is now 19) had his first Grand Mal, was told he is a genetic epileptic. He is not a happy camper about it. Hes on lamictal and IF he takes his meds does very well. He is also at a nueropshycologist for depression and a lil help feeling better. I was told his epilepsy was triggered by puberty. His EEG is clear epilpetic. Rare bi frontal spikes & Waves. He also has mild OCD and mild SID (sensory Intregation disorder). He also has an odd birthmark on his chest. I am looking into diet changes as well. He is in his second year of college and does well.

My daughter is now 15 and it seems puberty is kicking in epilpesy for her as well. She has myclonic seizures (JME) and has started on lamictal as well. Her EEGs show inconclusive and the Video EEGS are not clear. SHe also has an odd birthmark on the inside of her arms. She shows no signs of OCD or SID.. but does show a few signs of natural b*tchiness : ) but we love her anyway : ) **

They have a cousin on their fathers side with Grand Mals as well. I am still trying to sort out all types of info and figure it all out.

My kids both on lamictal and after getting used to it ( several months) seem to do well on it. My son is the process of having his license evaluated, to see if he can continue to drive. He was also turned down by the Marines and he is heartbroken.

My daughter just on her 3rd week of meds and we are still waiting for them to kick in. Her myoclonics seem less but I do hope they stop all together. SHe seems to be taking it well and looks at it as a good thing as she can help her brother.

I adore them both* and am glad to find forums of others to share thoughts and ideas with.

Thank you,
joan*


Phillip
started meds 1/2006

Jennifer
started meds 10/2008



Courage, discipline, fortitude and integrity can do a great deal to make a woman beautiful.

 

[Bernard]

Hi Joan, welcome to the forum. :hello:

There are quite a few parents here with children with epilepsy. Make yourself at home.

 

[sixpack]

welcome on board.

my daughter's seizures also started during puberty. She has a brain malformation that is really the primary culprit.

I hope the lamictal continues to keep the E in line.

 

[joan]

Thanks for the welcome* Great place. Im overwhelmed with all the info and grateful to be here. Im trying to catch up on the threads.

We know my son born this way and it genetic but we havent gotten a good "picture" of my daughters myoclonics yet soo.. we are kinda ass-uming : ) she genetic like her brother.. hopefully we shall soon see* Im with a pediatric nuerologist now but I am thinking of moving to en epileptologist. Once I sort out all this info.

Again, thank you*

joan*

 

[alivenwell]

A lot of people have hormonal issues with epilepsy. I think some people buy a hormonal cream for young women. Ask RobinN in here. He daughter did that one.

For me, personally, Lamictal has been a great intervention. It works great.

 

[Stacy]

My seizures started at puberty also. My hormones did a number on me. I started having sets of grand-mal seizures during pregnancy. Two sons later, I am lucky to be alive and have such a beautiful family. My suggestions:

Start a diary/journal for the kids. They are old enough to keep up with it, but it's a pain in the butt, so you may have to stay on top of it. Record EVERYTHING... date, time, activity, feelings (got dizzy at 9am after breakfast of jelly donuts), drugs taken, foods eaten, when they went potty and how productive it was. I know this sounds gross, but it's important. For your daughter especially, note if she has seizures during her menstrual cycle. I was in athletics as a kid, and I remember having petit- mal seizures all the time on the basketball court... especially when I was overheated. Note things like this.

If the pattern is like mine, (and I think many different ones exist), my hormones plummet during 'that time of the month" and so does my medication level. i read on a box of birth control pills once that even though they stop the bleeding, they are likely to make the hormone situation worse, especially if you take meds.

Because I kept track of what I ate, I was able to find out that sugar has an effect, as does acidic fruit eaten right before my period. Stress plays a huge roll in keeping my seizures at bay. No stress = no siezures. yoga helps with this. Physical exercise helps too, but not so much that you overdo it. I eat most anything, but since Bern is a vegetarian, I eat this way mostly. I do get protein, and I do eat chicken and meat once in a while. I can't remember the last time I ate beef. White rice, white bread, cakes, and cookies are pretty much off my list these days, but I don't miss them. I dont smoke, I do no drugs, and dont drink (although I'd like to once in a while). I do take Pamprin on an as needed basis, during the times when my body is full of water. This has done some good also.

Have your daughter read the book "The Venus Week" (good for you too) by Dr. Rebecca Booth. It explained everything about the hormones to me. I take tons of vitamins, in the hopes that one day I'll be better than normal. Get a regular sleep schedule... as much as possible, and keep the caffine to a minimum. I try and eat around 10mg of sugar a day, and try and keep my electrolytes up.

My seizures have occured in sets the last three years. Almost every time, it's on the first day of my period. Sometimes, I've just come off of something very stressfull (like PR for the Fire Department's Open House), and sometimes it's just before a stressful event (my first debate running for local public office, my son's birthday, being den leader and photographer for an entire camp of 800 scouts... ie.. I worked really hard and stressed out...you get the idea.)

I'm slowly but surely begining to figure all this out. I hope you have as much luck. It takes time, persistence, and a willingness to fix it. Keep us posted.

 

[joan]

Thank you so much for your post. It was very kind of you.

We have started a journal, not as detailed as you suggested, but Ill fix that : ) It did yield results. Its how we figured out when she starts her time of the month its the worst-est week. Each week after that, gets better TILL its that time again and the cycle re starts. We are working on it. Im not looking, per se, for a diet but I do plan on changing their diet. We have always been decent eaters but Im going to step it up a knotch. I think the white stuff has to go. Although we arent much for sugar or fats,I bet we ingest more than we know. Ive always watched carbs soooooo... were working on figuring it all out.
At this point my son in the less than desirable position. He isnt accepting and dealing with it and naturally that creates issues. Im not sure if its the meds, the E, bad sleeping/eating habits, a combination, or just being a teenager lol* But Ive found a nuero pshycologist that I think may help him. My sons seems to like him and I have high hopes. I am also going to look into an occupational therapist for the mild OCD and SIDs theyve uncovered as well. IF my son will get on a better sleep schedule, eat better, Id think that alone would make him feel better but it seems a catch 22... Its alot of info in a short amount of time but : ) in time, I hope to get good at it.

Is your E genetic also? I think my kids considered JME? even though they have different types of seizures.. After this? Im going back for my PhD : )

Enjoy your night and thanks again for your generosity,
joan*

 

[skillefer]

Hi Joan!Welcome to CWE. As you can see, a friendly group. I had my first seizure at the age of 3 and then they disappeared until I hit puberty. Keep the journal, and you never know, your daughter might outgrow hers. I outgrew one of the types of seizures I had. Anyway, good luck with the teens. (Trust me, I know it can be hard. )

 

[BuckeyeFan]

:cheers:

Welcome to CWE. Come on in and stay awhile. Have a seat and I will get you some coffee (or other preferred beveraqe). Please feel free to visit this site to relax in addition to all of the learning you will do. I find it a very comfortable place to be.

My E started at age 20, so I can relate to the frustrations your son is experiencing. No age is good, but that 13-25 range seems about the worst for guys emotionally.

You may also want to encourage your kids to find support web-sites as well. I like CWE, but sometimes the kids will want to be at a site separate from Mom or each other.

:cheers:

 

[joan]

My daughter will probably show up in time but my son? He's not there yet and since his sister now dx with E, he kinda took a few steps backwards. It hit him very hard. We're working on him but I can only hope, one day to have him anywhere chatting about this. One of my goals* All in good time.

I am really enjoying the site. Thank you all and enjoy your day.

joan*