Anyone with Epilepsy?

[Moonie]

Garrett was diagnosed yesterday after months of seizures as being epileptic. I am terrified and okay at the same time. Just wanted to know if there was anyone else with a child with epilepsy.

[Min]

:comfort Moonie
I don't have much experience with epilepsy. I had a boyfriend when I was 18 who had it. Controlled by meds. And I have a friend who lives in Utah that has it. No experience with any children that have it, though. I can understand the relief and the sadness, though. It feels good to know exactly what is going on, I'm sure. But on the other hand, you have a new course to follow now.

Is he on meds yet?

Please keep us posted on his progress :luv

[Moonie]

We just found out yesterday, so we started him on Trileptal today. He is very fussy tonight, but I do not know if it is the meds or just him. He is normaly not like this, so I do not know. I will keep you posted on what is going on. He also has sensory issues we are working with. The therapist we go see is wanting to lable him sensory integration disordered. I just do not want ot give in to all the lables so young.

[Candyland]

My mom has epilepsy but I have never experienced it with children. I am sorry that is the diagnosis but at least you can have an action plan now to keep him seizure free. :hugs

[Duck]

I know my mother had it when she was younger. I think she was in her early teens the last time she had a seizure. I don't know a lot about it, so I don't know if you can "grow out of it" or if they can just fade to nothing. I worked with a girl a few years back that starting having seizures in her early to mid-teens and still had them.

When Colin was 3 months old, he started having seizures. Knowing that my mom had them as a child I freaked, but it was his nervous system developing or something like that. At 6 months they were gone completely.

I'm sorry that I can't be of much service. I just wanted to let you know that I hope everything goes well! If I come across any new info, I'll post it even though I'm sure you are being overwhelmed with info right now.

[Mikeee]

I had a cousin that had epilepsy. He was my favorite cousin, he was very kind and outgoing. He lead a very normal life with his meds. I really don't know a whole lot about though.

[Twintastic]

My daughter Emily is on Keppra and Phenobarb. She has a VP shunt due to hydrocephalus and started having seizures in the last 6 months. She was only on the Phenobarb but had to have the Keppra added. She has never been officially diagnosed but the doc does write that on his notes.

I know it is really scary. I hated seeing my 1 year old baby having seizures. It was one of the most scary things I have seen.

[Frenchy]

I am so sorry! We have been having health issues with Evie and one of the things they said to look out for was seizures (due to pressure on the brain) the thought of it is scary, I can't imagine seeing it.... :hug

My nephew had seizures when he was younger, but hasn't had any in two years.

[Smidget]

oh wow, i'm so sorry to everyone who has to go through this with their children. i couldn't imagine. :hug2

[Kebsy]

Hopefully Ozzy will see this thread...

[Me Mom]

I have epilepsy. It started in my late teens. My seizures are under control with meds, I'm currently on Keppra. Feel free to pm me. :hug

[Lilac]

Im sorry Moonie, I have no experience with epilepcy. :comfort

[Free Bird]

Moonie, I know this has to be so tough for you.
I have a sister that has Epilepsy and Cerebral Palsey. She suffered from seizures when she was younger and they were controlled by meds as well. She is older than I am and I can only remember seeing her have 1 seizure.

She is now 47 and doing well. She has actually surpassed her life expectancy due to the combination of Epilepsey, CP and a congenital heart defect. Today's medical technolgy is so much better than back when my sister was diagnosed at 11 mo. Feel free to PM me if you ever want to talk.

[Hash]

I was never diagnosed with epilepsy, but a 'seizure disorder'. I've been through every test under the sun. It used to terrify my mother to see me stop breathing during one, but I never remember having them. I've had a few trips to the er, a couple concussions and a few stitches once (I had one while washing dishes). I took Dilantin and phenobarb but those did not work for me. I now use neurontin to control mine and haven't had one in almost 4 years (knock wood).

I'm sorry your baby is having them, I promise though, he's not in any pain, it is hurting you more than him. He'll be able to live a totally normal life.

Hope that helps a bit.

[Ozzy]

Hopefully Ozzy will see this thread...

Um, I just saw this. My 7 yo daughter has epillepsy. She currently takes Keppra for it. She was diagnosed two years ago this month. I'm at school right now and have to get to class, but feel free to pm me with any questions you might have. We had a rough patch summer of 2005 when seizures started up again and we had to switch meds. Like I said, PM me if you'd like.

[gypsymom]

:hugs It's good to finally have a diagnosis, but it also has to be terrifying and difficult to accept. I hope that meds will help him. I'm sure that he'll be able to lead a normal, happy life.

[Syndee]

My little one has epilepsy. He is also on Trileptol. He just started taking it a couple of months ago. So far, so good.