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Hi there, this is my first post. My daughter was diagnosed with Epilepsy in August. She is 14, and we have no history of Epilepsy. She suffers from Complex-Partial Secondarily Generalizing Seizures. This was just discovered Last Friday when we captured her last seizure on video. (Thank you iPhone!) We were just released from the hospital on Tuesday night after a 4 day stay on the video EEG as her doc thinks she might be coming under control now.

Currently, we're 8 days seizure free on Keppra 1000/1000 and Lamictal 50/50. Monday we have a follow up with her neurologist, and among other things, will discuss if she can return to school.

My question is, first, am I posting in the right place?

Secondly, when do you know you are "controlled" and can breathe easier? We're under heavy restrictions right now, no school, no travel, no unsupervised time, etc.

Glad to have found this place. I feel like a blind person trying to have my daughter navigate on this journey.



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Ruth

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Welcome to CWE. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I have had epilepsy since I was 6 years old. I went to school. I graduated from High School. Some people here have gone through Universities. If you don't put her through regular school, she might feel different from everyone else.

The most important thing is that she lives as normal a life as possible.

I had 4 children and 3 grandchildren. I am 72 years old.

You asked if you posted in the right place. You posted in the Nursery Room. You were suppose to post in the Foyer Room. The Foyer Room is for people who are new to the forum. Don't worry about it. We are glad to have you.
 

Fedup

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Funnibunni80

You are very welcome to C.W.E. being controlled and fully controlled are very different, you are controlled as you say when the medication reduces the amount of seizures you have to a minimal amount, say you are having 10 seizures a week, well the medication reduces the seizures to 1 a week, full control is where your seizures are keep under control totally with medication.

Of course your daughter can return to school, no problem there, your daughter maybe epileptic that is all.
 
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She has been attending regularly until now. She's on Thanksgiving break, but her neurologist wanted her pulled out until we achieved some measure of control because she's been sustaining injuries. He thought 4 weeks would be enough until we got her Lamictal up to a high enough dosage. Then he ended up admitting her, and brought her dosage up to 50/50, "where we seem to have managed a certain level of control". He also said that he wanted her out of school until she was 1-2 weeks seizure free. Today makes 9 days seizure free, so I'm hoping that's enough so that he will let her back.

Seizure frequency isn't something I can really judge, because they don't have any sort of pattern. Since we've started this journey and have been playing with meds, they've become more and more frequent. From months apart at the start, to just hours apart on 11/19. They are also particularly violent, usually requiring ER visits to check for injuries due falls/impacts. Last week, she managed not to fall (her teacher caught her) or hit anything... But managed to dislocate her shoulder anyway. :( Poor baby.

So control. This month, we went from 9 days apart to 4 days to 3 days. Now we're at 9 days and counting. At what point can I say, "Okay, this seems to be working?" When we hit 12 days (the duration before this month?) Or a month? Two? Three? From my reading it looks like she won't be a good candidate for withdrawing all her meds, but if she can just take her medication and lead a happy, normal life... That's what I want for her. She's 14, and her next big goal is to drive. California law says you need to be 3-6 months seizure-free. Is that long enough to be "controlled"? Being legally allowed, and having me comfortable behind the wheel are different things. Her first 2 seizures were 3 months apart. It's our longest interval- if that helps.

Sorry if this is rambly. I'll absolutely check out the Foyer as well.


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Ruth

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When I turned 16 years old and was able to drive, it was up to me if I wanted to drive or not. I thought about it. I decided not to drive. What if I had an accident and hurt myself and someone else during an unexpected seizure?

I have never driven a car. I take public transportation. When we move, I always look for a home that is a few blocks from the bus stop. I like walking too.
 

Kgartner

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First of all - welcome to CWE! Although I am very sorry for the reason you are here, you really are in a good place for getting lots of excellent information!

I am also the parent of a teen with epilepsy, a bit further along our journey than you. My daughter had her first seizures 2 years ago at 15, and started by having 3 seizures in one afternoon. Like your daughter, my daughter also has focal seizures that secondarily generalize. She was well-controlled for months on her first medication (Keppra) but could not deal with the side effects (major depression, panic attacks, etc.). Once we decided she could not tolerate Keppra any longer, her neurologist actually pulled her off of all medication and we were all hoping that perhaps the 3 seizures were a fluke. However, she then had another seizure 7 weeks later; we then put her back on medication, but she had several seizures the following month, and then in addition to the “big” seizures she started having very frequent focal seizures that didn't generalize. Since then it has really been an up and down journey for us, as we have worked with her doctors to try to get better seizure control.

After more tonic-clonic seizures last fall, we did a VEEG and her neurologist put her on a second medication - Vimpat. So far, Vimpat has thankfully kept the focal seizures from progressing, and it has now been a year since she has had a generalized seizure; however, it has not been successful in controlling her focal seizures, some of which are quite intense and impact her life a lot. Since she is on her 4th medication without full seizure control, she is considered to have intractable (i.e. drug resistant) epilepsy. We are considering moving forward with surgery – she has done most of the necessary pre-surgical testing, and is considered a good surgical candidate. She is actually cleared to drive since she maintains awareness during her focal seizures, but since her most recent intense focal seizure 2 weeks ago she does not feel comfortable with driving, and I agree with her.

So to answer your question – if you get a few months on the new medication without further seizures you will start to breathe easier. Your daughter really may find that lamictal does the trick and you won’t see any more seizures! Every day that goes by makes that more likely. Try very hard to relax and start letting her participate in more and more activities. But you have entered a “new normal” and as a parent of a child with epilepsy, I have to say I never really “relax.” I have seen my daughter’s seizures get better and get worse, and I don’t expect that the worry will ever really leave me – even if she has successful surgery there is always the chance that seizures will return. This is the unfortunate reality we live with.

However, she is not stopped by her epilepsy! While last year was very very difficult, and she left school for a while, she is back in school this fall and doing really well. She is determined and resilient, and I am very proud of her.

You will figure this out. Take one day at a time and appreciate every day without a seizure! Good luck and keep us posted!
 
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Thank you for sharing your story. I'm so sorry you're struggling with gaining control. This stuff is scary. She's excited to return to school, and hopeful we'll get the go-ahead on Monday, but hates the embarrassment that goes along with having seizures at school. :/

She's currently trying to talk me into allowing her out of her immobilizer for her recently dislocated shoulder. Ortho said she's stuck in it for another week though.

She's really hopeful that this med will be it though. She was on the swim team last year, and hopes to join again this year so long as her doc okays it.

I think it's really important that she controls her Epilepsy, rather than it controlling her. I don't want her to live in fear of the next one, but I want her SAFE. That's a hell of a line to walk.

I have a lot to learn, this looks looks like a good place to do it!


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Nakamova

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Hey FB, just wanted to add my welcome to everyone else's. I hope things settle down for you and your daughter.

I can sympathize with her shoulder issues. I dislocated my shoulder during a seizure, and then it started to dislocate/sublux all the time. Two surgeries later, it's now held in place with a bone graft. Not trying to scare you, but it's important to let the shoulder heal properly and get it checked out if it dislocates again to make sure there's no tearing of the labrum. Doing physical therapy to strengthen the muscles that hold the shoulder in place can be really helpful to prevent future damage.
 
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Im 28 i just got dignosed a week ago since then i have had seizures almost every night i have about 2-3 Im still new but it seems that they hit me when im falling asleep or when im waking up is this a pattern? I havent found my aura! The dr suspended my licence so i cant drive im a chef and im afraid that i will have an episode at work can someone give me any advise pls im desperate


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Music36

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ferchaleal5,

Welcome to CWE! People can be very supportive and you can learn a lot. You will want to educate yourself about epilepsy and try to be aware of your triggers. Stress and sleep deprivation are two of the big triggers for most people. Not everyone has auras, so you may possibly not have an aura. A few common auras are hallucinating a smell, feeling intense fear, or experiencing a deja vu. What you described (having seizures related to sleep and waking up) can very well be a pattern. You may also be having them in your sleep. An extensive EEG would tell. It is best to write everything down on a calendar (times, symptoms, etc.) and tell your neurologist. It would be great if you can see an epileptologist (neurologist who specializes in epilepsy). You'll find them at university clinics. It can take some time of trial and error to find the best med(s) b/c everyone's body is different. It can also take time for your body to adjust to the meds. What type of seizures do you have?
 

Music36

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Another thing is try not to worry about having seizures b/c the anxiety can stress you and cause seizures. I know it's all new to you so it will take time to adjust.
 

zombelina

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Hi there, this is my first post. My daughter was diagnosed with Epilepsy in August. She is 14, and we have no history of Epilepsy. She suffers from Complex-Partial Secondarily Generalizing Seizures. This was just discovered Last Friday when we captured her last seizure on video. (Thank you iPhone!) We were just released from the hospital on Tuesday night after a 4 day stay on the video EEG as her doc thinks she might be coming under control now.

Currently, we're 8 days seizure free on Keppra 1000/1000 and Lamictal 50/50. Monday we have a follow up with her neurologist, and among other things, will discuss if she can return to school.

My question is, first, am I posting in the right place?

Secondly, when do you know you are "controlled" and can breathe easier? We're under heavy restrictions right now, no school, no travel, no unsupervised time, etc.

Glad to have found this place. I feel like a blind person trying to have my daughter navigate on this journey.



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Hi, and welcome! I first started having seizures when I was 8. It's scary for the whole family after a diagnosis, but it gets better! When I started having seizures as a kid, I developed severe anxiety from the medication but my parents did not notice. So I would recommend just keeping an eye out for any changes in behavior, and keep an open line of communication with your daughter about how she is feeling. I'm sure that can be hard with a teenager!

As far as driving, I have simple partial seizures very frequently but my doctor has cleared me to drive because I have not had my awareness affected by seizures in 9 years. Many people would disagree with my decision to drive, but it is the choice I have made. So driving is a very individual choice, but a successful life is possible with or without a driver's license. Congrats on your daughter's improvement so far.
 

zombelina

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Im 28 i just got dignosed a week ago since then i have had seizures almost every night i have about 2-3 Im still new but it seems that they hit me when im falling asleep or when im waking up is this a pattern? I havent found my aura! The dr suspended my licence so i cant drive im a chef and im afraid that i will have an episode at work can someone give me any advise pls im desperate


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Hi! I think that seizures upon waking up or falling asleep are quite common. I'm sorry you are going through this, but you are in the right place to vent and share your concerns. We have all felt these fears in our own way. I hope you can find some improvement soon with your seizures.
 
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ferchaleal5,



Welcome to CWE! People can be very supportive and you can learn a lot. You will want to educate yourself about epilepsy and try to be aware of your triggers. Stress and sleep deprivation are two of the big triggers for most people. Not everyone has auras, so you may possibly not have an aura. A few common auras are hallucinating a smell, feeling intense fear, or experiencing a deja vu. What you described (having seizures related to sleep and waking up) can very well be a pattern. You may also be having them in your sleep. An extensive EEG would tell. It is best to write everything down on a calendar (times, symptoms, etc.) and tell your neurologist. It would be great if you can see an epileptologist (neurologist who specializes in epilepsy). You'll find them at university clinics. It can take some time of trial and error to find the best med(s) b/c everyone's body is different. It can also take time for your body to adjust to the meds. What type of seizures do you have?


I have generalized tonic clonic there are avout 25-45 seconds but usually comenin clusters of 2-4


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