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morning seizures, anybody go without meds?

My five year old son started having seizures about 7 months ago. After a couple med trials, we have them somewhat stable (they aren't as long or severe). We have noticed that all of his seizures to date have been between 7 and 8 in the morning and there is a good chance that something in his wake cycle is triggering the seizure. The doc has suggested that if this continues that we might want to consider stopping the meds all together and allowing the seizures to happen and treat them as they come if they last longer than 10 minutes. He remarked that most use the meds to protect themselves during awake hours. I would love to get him off the trileptal, it makes him so cranky with each dose increase. Anybody have any thoughts/experience etc...to share? thanks

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Re: morning seizures, anybody go without meds?

Thank you, my nine-year-old son was diagnosed in November. Immediately, he was also given Trileptal. Soon after, we noticed a distinct decline in his school work, self-esteem, and general attitude for the things he typically loves. He has had what I call 2 series of events. In January, he experienced spacy episodes, marked with an ashy appearance, nearly every day for two weeks. (However, the first real seizure we witnessed was grand mal.) Next, in July, for two days he had similar spells. That's it. I spoke with our family physician who suggested more testing and agreed with me in taking him off the meds. I am uncertain of the benefits, though. Today, is the first day he is completely off. We are still up after 1am, with vomiting. (But, no seizures to mention.)

Re: Re: morning seizures, anybody go without meds?

Wow, good luck with that... Our experience with the trileptal has been that he is really grouchy for the first few days after a dose increase but eventually stabilizes.
Question 4 u... The "spacy episode you described, are the doc calling these seizures? Do they know why he is vomiting at this point,is it related to coming off the meds? Just Curious.

Re: morning seizures, anybody go without meds?

I take trileptal, it makes me get low sodium. And that causes seizures. SO I am in the middle of getting off of it now and switching to Lyrica.

That would be wonderful if you can do that. SO I guess he will give you diastat to treat each seizure for your son?

best of luck
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: morning seizures, anybody go without meds?

Thanks Lisa, we would have the diastat to use if the seizure lasted longer than 5 minutes. Fortunatley his last two seizures have been fairly short(less than 5 minutes). Of course I would assume that it due to the trileptal. We are not planning to stop the med anytime soon, just considering the options and seeking others experience and wisdom. thanks!

Re: Re: morning seizures, anybody go without meds?

Good Morning Lisa:

My daughter is on Lyrica. I would love to know how it makes you feel when you go on it. My daughter cannot talk. She is also on several other drugs for seizures - one being trileptal. We want to get her down to 2-3 meds for her seizures if possible. She has a lot of seizures each day - especially in the a.m.

Thank you for any informaton that you can give me.

K

Re: Re: Re: morning seizures, anybody go without meds?

I have been on lyrica now since October. It makes me very hungry and I have gained about eight pounds from it. I am still on trileptal but a small dose. I have just learned that even the low dose can cause the low sodium problem.

I really dont know what to do at this point. I have tried all the meds.

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

my son Alex 20 has had

my son Alex 20 has had seizures since he was 6 yrs old and had brain surgery in 8/03. He was 2 1/2 seizure free than they started again. He had a grand mal and I went hysterical called his neuro who asked his medication level. I had him on 1/2 a keppra and 1/2 lamictal did so well for so long. the neuro gasped and said raise the meds. I did and the vicious cycle started over again. I don't know how I fell for it again. More pills , lyrica, lamictal , keppra. Changed neuro's and got him off of those 3 but added trileptal.Now he is on trileptal 1800 mgs daily. I want to bring it down. The neuro won't let me. In the 16 years we've been dealing with this condition there has never been a med that helped. I think the meds make the seizures worse. my question is if the meds don't work, why do the neuro insist that he get them. and why don't i just stop giving them to him.

Re: morning seizures, anybody go without meds?

jjjlow3, i also have a son with epilepsy. He was diagnosed 1 and a half years ago. We tried Tegretol (allergy) then we tried clobazam and are not getting control. Neuro wants to add another med and i am ready to take him off all meds too. He has only had early morning seizures like your son. He averages 1-2/month and they last 1-2 minutes max. With the drugs they were just as frequent but between 10 seconds and 1 minute long and they didn't "spread" as much. (He was consious during the seizures which he hadn't been before and could even talk a little.) you don't get much support for trying this route but i'm feeling the same as you. Ready to let him just live, and be, and seize if it's going to happen on drugs or not... I am not ready however to get into chemical recipes that still don't bring control... i feel like i let them experiment enough and at least we know what 2 of the drugs will do. Have you taken him off meds yet? I see your post was in December?

Re: Re: morning seizures, anybody go without meds?

Hi,
I have had epilepsy since I was 2 yrs old and now I am 48. There were times when I was of meds because my folks couldn't aford them. I believe that the siezures have gotten worse over the years that I was off the meds and that if I was told and made to take the meds as I grew up in my teens that I would not have had to seek out other ways to control my siezures ie surgery and vns...etc. anotherthing thing to think about is when you take somebody of thier meds make sure you wean them off the med and tell thier nuro. as sometimes they will have a huge siezure that you have not seen before....I took myself of my med on my own cold turkey when I got pregnant with my 1st baby and I ended having a grand mal siezure and I didn't go completly out during it. Vomiting can be a part of a siezure as it is what has happened when I had mine before my surgery. peppermintpatty

Re: morning seizures, anybody go without meds?

If my son were in a similar situation, I would definitely try to go without the medication. My son was only having seizures during sleep or upon waking so we were choosing not to medicate. Unfortunately for him, the seizures started occurring more and more frequently and they were getting stronger so we decided to start him on medication. Shortly after the medication was started, the seizures started occurring at all different times of the day. It would not be a reasonable option for our son at this time, but if sometime in the future things change and the doctor suggested going without medication, I would jump at the chance. You just have to take it slowly...gradually decrease his dosage. If things don't work out, you can always try the medication again. Good luck to you and your family!

Hi. My 6 year old daugther

Hi. My 6 year old daugther was diagnosed with Benign Occipital Childhood Epilepsy in February of 2006. Sometime before the official diagnosis she started taking Topomax (one 15 mg sprinkle capsule at night--we never increased the initial dosage). To our knowledge, she has had a seizure in her sleep around every 4 months. We really only witnessed two or three because the rest she has slept through but we believe a seizure occurred because she urinates in her bed which she never does normally. We go to an E specialist and our plan is if she goes 2 years (come February 2008) without seizures in the daytime, then he will take her off the meds and see how she does. Our doc thinks it is a big decision to give meds and would like to see her off them but wanted us to wait the described time period.

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