Epilepsy Foundation

My teen (almost 16 yo) was just diagnosed with grand mal epilepsy this week. She had active seizure activity on her EEG this week the day after her second seizure.  She was started on Keppra on Wednesday at 500 mg titrating up to 2000 mg over next four weeks. She will have the ambulatory EEG this coming Wednesday for 48 hours. I am scared. She is feeling like she is losing control. Very scared. My husband thinks this is no big deal - just take her meds and life goes on; like no big deal. I feel alone except for a few good friends and my family other than husband. Just feels good to type this out. Thanks for this site!

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I am so sorry this is going on! Of course this is difficult for both of you to handle! It is hard enough to be 16, let alone have a new seizure diagnosis! I am so sorry that your husband is not feeling this the same way. My husband reacted the same way when my son was diagnosed at the age of 7. I think men sometimes believe what they hear when doctors say, "the medications can control 70% of the time, then after a year, we can try to wean them off if there are no more seizures" At least that is the only thing my spouse heard. 13 years later my son still struggles.

 

I hope that your daughter does well on her medication! I am so glad you came here for support.

I'm sorry : ( 

 

It is very hard to get this diagnosis, especially when you haven't had something so big as this before : (

 

Remember a lot of the times one can get the szs under control and life will go on.

 

Hang in there and vent away anytime here.  We do understand <3

It's scary to get something like this thrown at ya from left field.  Been there, especially the part where it can seem like no one else quite gets it.  You're in the right place.  The folks on here help each other with the big and the small.  They've been a God-send for us. From meds, to memory loss, to seizures (types and durations), side-effects etc...They also helped alot with letting us know what to do as far as school. IEP, 504 or nothing at all.  All of them are different, but sometimes it helps to bounce ideas.  My son is 11.  He has the Tonic Clonic (Grand Mals) as well as absence....I'm a little nervous the closer we get to puberty, as far as hormones go and how they may effect his epilepsy.  He has no other health issues otherwise, but Epilepsy can be scary all by itself. It helps to read about it & talk about it. Kinda get's rid of the scare factor when you know your enemy. 

 

Wishing you and your child the best.  Also, calling the Epilepsy Foundation can be very helpful.  We did and managed to get done in ONE hour, what we've been trying to do for a year....understand.   

Don't let the stories you will hear scare you. I hope your husband is right - sometimes it works exactly that way. But it is scary and it is such a difficult age to have that diagnosis when she is thinking about driving and becoming more and more independent.

 

My daughter is 17 now and had her first grand mal seizure at 9. It's been a rough road, but she's been seizure free for over three years now , driving, and heading off to college in the fall. I still worry.

Did they warn you about keppra's side effects? It is often recommended to take B6 to level out the emotional ups and downs that come with keppra.  When keppra works it is wonderful and when it doesn't it is awful. We are one of the ones for whom it didn't work. None of the meds are the "right" one - more than anything I know it is a guessing game to find the right one.

 

It's a hard time- and we are here for you. Be as patient as you can with your daughter, your husband and yourself - you will get through this.

 

Carol

Thank you all for your help. This is a great place to be. I am glad our ped neurologist told us about this. I am trying to get over my fear.

 

My daughter is signed up to go to a ministry camp later this summer - mid-August. I want her to go for herself, but for myself - no way. I don't want her out of my sight. I'm trying to let go and not make her feel like I am smothering her. Do you know what I mean? The camp is eight hours away and scares me to let her go.

 

She is such a bright girl, friendly, beautiful inside and out, desires to go into ministry. She is taking college classes while she is still a high school sophomore and that plan continues. A lot of questions will be answered after the two day ambulatory EEG late next week. Her Keppra dose goes up to the next level on Wednesday night.So far we haven't noticed detrimental effects.

 

I am afraid that during the night she will have fallen out of bed and hurt herself beyond hope. I wake up around 4 am and listen, again once about every hour listening. Ever since diagnosis I have slept in the living room near her room in case I hear anything (her seizures have all happened in early mornings a couple hours before her normal waking time). (I slept in recliner because I've been sick with upper respiratory stuff too - and the all crying I've been doing hasn't helped that.)

 

This forum seems so very helpful. I don't know what I would have done without the supportive replies. It was a rough weekend. You all know this better than I do. It feels good to talk to parents who have been through it. We want to protect our kids. I told my daughter that I would do anything to take her diagnosis onto myself, but it doesn't work that way. She and I cried and talked and prayed on her bed the other night. The first night of her sleeping in her new bed she's been wanting for some time now - one she chose before dx. I was so afraid for her to sleep on it feeling like it was too far off the ground in case of a seizure.

 

It is so good to read the encouragement here. Thanks to all replies.

 

Julie

 

The Epilepsy Resource Center thanks you all for sharing with the community and we look forward to hearing from you again.

 

Mary Ann Thornton

The Epilepsy Resource Center

The Epilepsy Foundation

 

Please check out these Foundation programs:

Take Charge:  http://www.takechargeteens.org/

Go EYC: http://www.goeyc.org/

School Nurse Online Training: http://www.nasn.org/Default.aspx?tabid=120

Epilepsy and Seizure Response Training for Law Enforcement: http://www.epilepsyfoundation.org/firstresponders/index.cfm

 

I am so sorry to hear that your kiddo just got this diagnosis. My MIL had the same response as your husband when my daughter was diagnosed. She made it seem like I was making mountains out of mole hills for being upset, scared, confused, shocked, and worried that everything wouldn't be just peachy with a pill. Not fair. It's a mother's worry that makes sure her kid gets the best medical care possible! If I was cavalier about her seizures, she never would have gotten the attention she needed.

 

You have found a good place for questions, concerns, etc.. The kind people here got me through a lot. Ask and vent what you want.

Hi Julie,

My daughter has had two Grand Mal seizures and after a 48 hour VEEG, she was diagnosed with Epilepsy. It all began in November 2010. It's been quite a ride for us. My husband "went back to normal life" a lot quicker than I did. I'm still not quite there, but I'm getting back to our "new" normal. At our last Neuro appointment, I had a list of questions, "can my daughter have children, can she ride roller coasters, can she go on a school trip, and on and on and on". The Neuro said, "as long as she's on her meds, she can do everything she's always done. I found peace in hearing him say that. I didn't think I'd ever be the same, but I'm getting there. It's very overwhelming, isn't it? I'm so glad you wrote on here. I have found it to be very helpful and everyone is so supportive. We all "get it" Our experiences are similiar!
My husband didn't brush it off as innocent, but he didn't understand it either. I think for him, if he ignores it, it will go away.  It's not that he doesn't care, but he's afraid of it taking over our sons life.  And I agree with him on that part.  I chat on here alot, but I minimize what I say to my child.  I do the worrying for him. Mind you, I still get under his skin now & then.  Like when we pulled him out of football. He's still mad about that. But we just don't see the point in risking anymore assults to his brain. He's only got one & there's no such thing as a brain transplant!  Also, we've had to learn patience.  The mood swings we've had to deal with are a real pain, but we recognize them for what they are.  Sometimes, I literally HAVE to leave the room. We pick our battles.  And slowly but surely, we've found meds that effect his moods less.  But it's been trial and error.  I do know however that as he gets older, he will need more information so that he can make his own decisions and move into adulthood.  It's scary thinking of him being on his own without me hovering and waiting for the next seizure to hit, but hopefully, when the time comes, we'll be able to educate him on how to ensure his own safety. 

I am 40 and I have had grand mal epilepsy since I was 8 years old.  Both of my sons were diagnosed with epilepsy at ages 17.  They both have a different type of epilepsy.  I understand your scared, but the more scared you are, the harder it will be for your daughter.  There are good meds out there, and hopefully you'll be able to get one that controls it soon.  My sons had to try out a few before one worked for them. We are still trying to find one for my youngest son.  He just had an ambulatory eeg the other day and I watched him experience a couple of them during that. 

I have to agree with your hubby, treat your daughter like you always did before.  Talk to her about her fears when she has them, but don't add to them.  You don't want to give her panic attacks.  I can't tell you how many times I decided not to go someplace, or do something because of fear.  The fear is worse than the actual seizure.

Good luck to you and your daughter. 

I can relate to your situation.  When my son had his first seizure my husband thought he was faking.  Sooooo frustrating.  I knew my son wasn't faking and told my husband to leave the room.  When we finally got an appt. for an EEG my husband again thought I was wasting my time and we would come back with no new info. (although he did stay up with my son all night the night before...it was a sleep deprived EEG).  Needless to say my son had a seizure (tonic/clonic) about 10 minutes into the test.  Now, my husband has changed his tune.  He is very supportive.  

I'm sorry you're having to go through this, but hopefully your husband will be more supportive in the future.  Type away whenever you feel like it.  It's good therapy for sure. 

(((((Julie)))))

 

Wanted to give you some hugs and welcome you to the forums!

 

So sorry to hear about the diagnosis for your daughter.  Hoping all goes well with the EEG and that the Keppra will help keep things calm!

 

You don't have to feel alone anymore.  We are here for you on those "great" or "not so great" days! 

 

Keep us updated when you can on how things are going!  One day at a time mom!

 

Hugs,

Donna

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