Epilepsy - spin off from disABILITIES Thread

[tmatthews]

Hello all. I just saw this thread and thought I would share a short summary of my life w/ epilepsy....At the age of 23 I had my first seizure. I was placed on a couple of different meds which made me extremely tired and unresponsive. After being told NOT to get pregnant...you guessed it my now ExH found out we were expecting. Meds were changed to tegretol (for a safer pregnancy) and I delivered a healthy 10 lb baby girl! I would have seizures only about 1 or 2 a year unless my doc thought of "weaning me" I would get to 1/2 a pill every other day and BOOM! So 4 years later, had a healthy 10 lb 10 oz son! All went well. I usually only had night seizures unless I forgot med or was being weaned and problem was linked to right front temporal lobe. Separated from EXH 2 years later and things got crazy! I was seizuring at least once a month alone w/ 2 kids. They would call 911 for me ...it was a dark time. I was changing meds a lot and went on Keppra....made me NUTS! I know it affects everyone differently and a saving med for one is not for another! I mean I was CRAZED! Had to leave work to come off meds and even went for eval for surgery. I ended up w/ neurontin and carbatrol and then zonegran. Enter NewDH five years ago and haven't had a seizure since. (knock on wood) Have since had a DS 9 lbs 14 oz and 2 weeks early. NOW GUESS WHAT?? For the first time in about 20 years I am med free! Clear eeg... No one knows why now or even why they started. Please stay hopeful. Thinking of you all!

 

[steffali]

Hello all. I just saw this thread and thought I would share a short summary of my life w/ epilepsy....At the age of 23 I had my first seizure. I was placed on a couple of different meds which made me extremely tired and unresponsive. After being told NOT to get pregnant...you guessed it my now ExH found out we were expecting. Meds were changed to tegretol (for a safer pregnancy) and I delivered a healthy 10 lb baby girl! I would have seizures only about 1 or 2 a year unless my doc thought of "weaning me" I would get to 1/2 a pill every other day and BOOM! So 4 years later, had a healthy 10 lb 10 oz son! All went well. I usually only had night seizures unless I forgot med or was being weaned and problem was linked to right front temporal lobe. Separated from EXH 2 years later and things got crazy! I was seizuring at least once a month alone w/ 2 kids. They would call 911 for me ...it was a dark time. I was changing meds a lot and went on Keppra....made me NUTS! I know it affects everyone differently and a saving med for one is not for another! I mean I was CRAZED! Had to leave work to come off meds and even went for eval for surgery. I ended up w/ neurontin and carbatrol and then zonegran. Enter NewDH five years ago and haven't had a seizure since. (knock on wood) Have since had a DS 9 lbs 14 oz and 2 weeks early. NOW GUESS WHAT?? For the first time in about 20 years I am med free! Clear eeg... No one knows why now or even why they started. Please stay hopeful. Thinking of you all!

WOW that is great 20 years med free Congrats on all the good news!!!!

 

[Snoopymom]

Hi, how is everyone?

Alex had a 24 hour AEEG (ambulatory EEG) last week and some definite left frontal lobe seizure activity showed up. The neuro called me himself because he didn't think Alex was having seizures at all and had recommended a psychiatrist. He's having a sedated MRI next week. The trileptal is still working, and his behavior has improved about a million percent. He has started to complain about flashes and feeling like something is biting his brain. There are still so many questions and worries, but I'm trying to take it one step at a time. I hope everyone and their kiddos are doing well.

Hugs,
Cindy

 

[alizesmom]

Cindy, sending you hugs. When will the docs figure out that we know our kids? Karen

 

[Snoopymom]

Epilepsy Awareness Month is here again, so I thought I'd bump this thread.

Here is Alan Faneca's success story. Alex's seizures present themselves a lot like his, which is why it took so long for the dx, so it really helped me to read how everyone supported him and he didn't give up on playing football.

http://www.nj.com/jets/index.ssf/2008/10/new_york_jets_no_obstacle_fane.html


It was a long year, but October was a turning point. We increased Alex's Trileptal, had a full neuro psych eval and he started taking Vyvanse for ADHD 2 weeks ago. (20%-30% of Kids with Epilepsy have ADHD, which I did not know.)

We're seeing huge improvements. I was terrified of the extra meds, but did lots of reading and our pedi is getting involved with blood and urine tests and she scheduled an EKG. His IEP is going well and I finally feel like we're on the right track.

For the first time in a really long time, I'm starting to get the Disney trip bug! Life is good!

Looking forward to everyone's updates, hope everyone is doing fantastic!
Hugs,
Cindy

 

[MandM-Mom]

I just stumbled upon this thread! Glad things are looking up for your family!

I have a DD 2 1/2 with Down syndrome and a diagnosed seizure disorder. She was diagnosed at finally at 8 months old. She was having seizures for 6 months 3-5 times a day before we finally had a diagnosis. She was 8 weeks old when I saw her have her first, she turned stiff, and breathing would become shallow, then be absolutely unconsoleable and then sleep for hours. For months I argured with dr.s they insisted she was having apnia due to her narrow nasal passages and the down syndrome. Finally she had one at 8 months that was so bad I called 911, they admitted her and she had 3 seizures the first night in, and finallly someone believed the crazy mom

We have upped her trileptal a few times but have not touched since spring when she had her last one. Our initial dose was .25 ml 2xday when she was only 8.6 lbs, our current dose is 1.5 ml 2xday and she currenlty weighs
18.9 lbs

Its definitely been a long haul but in the end we know our kids best and we know when somethings just not right with them and we can't be afraid to fight for them, I never knew I had it in me to argue with a Dr about a diagnosis but sometimes you just gotta do it!!

 

[monkey68]

One of my best friends had seizures all the time from a brick falling onto his head at the firehouse where he was a firefighter. He went for about 5 years, getting seizures every day, finally had surgery where they removed a part of his temporal lobe. He's completely off his meds, and hasn't had a seizure since. He has no other side effects from the surgery either, no memory problems or anything. When he first had it done, he had some concentration problems, but they've worked themselves out with time.

 

[steffali]

Hi everyone, I just got home from spending 10 hours in the ER!! My daughter had another seizure at program, they did a CT scan to make sure her shunt is working and they upped her Trileptal, it seems to be that she is having a seizure about every 2 months We are home now and she is still a little tired from the Diastat so I will sleep with one eye opened over her...........

I just need to come on disboard and get my mind off of the days events.....

 

[tigger53]

hi all, i was glad to run across this forum on seizures. my daughter is 25 and has had one seizure three weeks ago. i happen to be there when it happened, believe me when i say i was scared out of my mind. i didn't know what to do but luckly i handled it right. she has had an ekg, blood work, mri, cat scan all of which came back normal, however her eeg showed some abnormalities. her dr. took the whole thing very casually saying "seizures happen, you fall down, pass out and when its over you get up and carry on" i don't share that casualness about having a seizure. my question is, i'm taking her to disney in the summer and i would like to know how to take precautions if any are needed. does the heat trigger symptoms, how about fast rides or just doing alot of walking? i hope i don't sound too out there but being new to this i'm a bit worried about going. i really want her to have a great time and not have her feel like i'm being too protective. 25 or not she's still my little girl.

 

[MandM-Mom]

hi all, i was glad to run across this forum on seizures. my daughter is 25 and has had one seizure three weeks ago. i happen to be there when it happened, believe me when i say i was scared out of my mind. i didn't know what to do but luckly i handled it right. she has had an ekg, blood work, mri, cat scan all of which came back normal, however her eeg showed some abnormalities. her dr. took the whole thing very casually saying "seizures happen, you fall down, pass out and when its over you get up and carry on" i don't share that casualness about having a seizure. my question is, i'm taking her to disney in the summer and i would like to know how to take precautions if any are needed. does the heat trigger symptoms, how about fast rides or just doing alot of walking? i hope i don't sound too out there but being new to this i'm a bit worried about going. i really want her to have a great time and not have her feel like i'm being too protective. 25 or not she's still my little girl.

I hope your dd is doing better It can be very scary but it is important to stay calm and it sounds like you did all the right things. Everyones triggers are different sometimes they can be pinpointed sometimes not, my dd2 has a seizure disorder and we have not been able to pinpoint her trigger yet. When your on vacation just remember to keep her hydrated and get her rest especially if she ends up on the meds so her med levels stay where they are suppose to be, at least thats what our neuro tells us when we go on vacation. Of all places to go on vacation I always feel safest while at Disney with my children, go enjoy, you can't worry about the unknown waiting for another seizure, I did that with my dd for the first year and finally realized we were missing out because I was terrified it would happen while we were out. Any questions you have can be answered here on the DIS, planning our first trip back after we had my youngest started off stressful but these boards answered all my questions about taking a baby/child with special needs, have fun planning and enjoy

 

[tigger53]

hi mandm-mom, thanks for your kind words. i hope that by the time we go to disney i'll be more relaxed about all this. before we use to worry over if the heat would aggravate her asthma, and it did at times, and we got through it. i figure we won't be commandos on this trip. just being there and enjoying everything at a slower pace will be great because we'll be at DISNEY, yae.

 

[Snoopymom]

my question is, i'm taking her to disney in the summer and i would like to know how to take precautions if any are needed. does the heat trigger symptoms, how about fast rides or just doing alot of walking? i hope i don't sound too out there but being new to this i'm a bit worried about going. i really want her to have a great time and not have her feel like i'm being too protective. 25 or not she's still my little girl.

I'm sorry she did not get more answers from her doctor. If she starts to feel that something's not right, she should get a second opinion.

Heat and not getting enough sleep are common triggers, (big ones for Alex) and of course flashing lights from some rides can cause seizures, but I don't think it is as common. I would go and do what everyone should do, take breaks, stay out of the hot sun, drink water, don't skip meals, etc.

A good website and there are some great message boards on http://www.epilepsyfoundation.org/.

And don't worry about being overprotective, there is a lot of denial that seems to go along with seizures, so I think it's much better to be watchful than not.

Hugs,
Cindy

 

[Snoopymom]

Hi everyone I just came upon this thread. My DD was born with hydrocephalus and has multiple disabilities, she is 21 years old now.
She had her first seizure at 10 months old and has been on a lot of different meds. She went 10 years without any seizures until she had to have surgery for her shunt to be revised. Ever since then (2 years ago) she gets them for no rhyme or reason. She is on Trilleptal and Topomax. She doesn't get them as much as she use to but she does still get them bad where she has to be taken to the ER and given adavan.
My daughter did have a seizure ( after the illuminations cruise) back in our hotel at the POLY. The staff was so nice there and the ambulance came and took us to Celebration. They stabilized her there and of course made sure her shunt was functioning ok then sent us back once she was fine.
The next day we stayed back at the POLY and just relaxed. The staff at the Concierge re arranged our dinner reservations for the rest of the week and everything else was fine. Disney is always my safe haven for vacations and even when the worst happens.
We always have DIASTAT with us but we have never used it. FOr some reason we have always called an ambulance and taken her to the ER.
Sorry its a long post I am just happy to have found this thread.

That is so nice to hear that you find Disney a safe haven for vacations! Thanks for sharing.

You might find a lot in common with the parents on the http://www.epilepsyfoundation.org/. There is also a sub board for those with mulitple diagnoses. They are so wonderful and supportive.

Hugs,
Cindy

 

[Snoopymom]

they admitted her and she had 3 seizures the first night in, and finallly someone believed the crazy mom

We have upped her trileptal a few times but have not touched since spring when she had her last one. Our initial dose was .25 ml 2xday when she was only 8.6 lbs, our current dose is 1.5 ml 2xday and she currenlty weighs
18.9 lbs

Its definitely been a long haul but in the end we know our kids best and we know when somethings just not right with them and we can't be afraid to fight for them, I never knew I had it in me to argue with a Dr about a diagnosis but sometimes you just gotta do it!!

Boy, I sure can relate to that crazy but determined Mom road. Thanks so much for sharing!

Hugs,
Cindy

 

[Snoopymom]

Hi everyone, I just got home from spending 10 hours in the ER!! My daughter had another seizure at program, they did a CT scan to make sure her shunt is working and they upped her Trileptal, it seems to be that she is having a seizure about every 2 months We are home now and she is still a little tired from the Diastat so I will sleep with one eye opened over her...........

I just need to come on disboard and get my mind off of the days events.....

I hope things are calm now. Let us know how you're doing.

Hugs,
Cindy

 

[Snoopymom]

One of my best friends had seizures all the time from a brick falling onto his head at the firehouse where he was a firefighter. He went for about 5 years, getting seizures every day, finally had surgery where they removed a part of his temporal lobe. He's completely off his meds, and hasn't had a seizure since. He has no other side effects from the surgery either, no memory problems or anything. When he first had it done, he had some concentration problems, but they've worked themselves out with time.

There is still such a stigma with siezures and surgery for them, I hope he shares his story as often as he can, especially with kids. Thanks for sharing exactly why an awareness month is needed!

 

[Camno's Mama]

I actually don't come over to this board, ever, but happened to notice this thread from the main page. Kind of a coincidence, really, so I decided to post.

I have a seizure disorder that was the result of a hard hit to my head when I fell after playing the "fainting game" as a thirteen-year-old. It's very well managed, and I've learned to live with it. I haven't had a grand mal seizure in a very long time. Mostly because I have respect for it, and follow the rules.

That being said, I know it's very hard being the parent of a child with epilepsy or a seizure disorder of some kind. My parents walked on eggshells for a long time. Once you are able to find something that works for your child, it will get better. You can really only build that comfort over time as you learn your child's limits. (And, more importantly, and your child begins to understand his limits).

As for keeping it in mind during your trip to Disney...just relax. Make sure your baby gets a normal amount of sleep and drink lots of water in the heat. While heat doesn't usually bother me, per se, I know that physical stress coupled with mental or emotional stress can set me on the edge. Stay away from strobe lights and if something starts, just cover your baby's eyes. Make sure you eat regularly...I was once told that my body would metabolize my meds faster if I wasn't eating enough. (Not sure if I'm quoting that exactly right, but I've noticed a difference since watching that I don't go too long without food).

Good luck...I didn't get a chance to read through the whole thread, but if you ever have any questions or anything, feel free to ask. I might not be all that helpful given how easy I've had it overall, but I'm willing to try.

 

[tigger53]

hi cindy, thanks for your support. i myself wish that my daughter would get a second opinion. she had the one seizure 4 weeks ago and 4 out of 5 tests said she was fine. i know the eeg is the big one but her doctor was so casual about it and her whole episode it makes me wonder if she is right in saying that my daughter needs to be on seizure medicine for the rest of her life. at the time of this seizure my daughter was battling major issues with her asthma and was on predisone, which can cause seizures in some cases, also she had been on bed rest for a servere sprained ankle. so since the beginning of sept. her body was under a lot of physical stress. i know my daughter is very shaken by the seizure and is afraid it will happen again so she wants to rely on the fact she needs this medicine. i too am scared for her but would feel much better if there was a second opinion that would surly make us both comfortable.