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Old 04-01-2005, 08:35 AM   #1
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fionaa HB User
Juvenile Myoclonic epilepsy

I am 19 yrs old with JME. Can Juvenile Myoclonic epilepsy be cured completely? I mean is it even possible??
Also, can a female with JME get pregnant and deliver a normal child. I am taking sodium valproate...if i am off the drugs i get attacks...if i on the drugs they may cause congenital malformations in the baby...
Too young for thinking abt pregnanacy, but its important for me to know...

 
Old 04-03-2005, 11:18 AM   #2
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Re: Juvenile Myoclonic epilepsy

My Daughter most likely has JME> Her new neuro is waiting a new EEG to be sure.


Valproate is a good med to control JME> Bad news is that it is not one that has a cure. The good news is that it is usually well controlled by meds. Depakote (Valproate ) is not one you want to be on and get pregnant. Lamictal is a safer one that also works well for JME> Talk to your neuro and see if something else is ok for you....
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Old 04-22-2005, 03:57 PM   #3
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Re: Juvenile Myoclonic epilepsy

Hi,I am a 36 yr old female who has JME i have had it since I was 6 yrs old.I now have 3 Children none of them have Epilepsy "touch wood".Sodium Valporate (Epilim) causes nural tube defects this can be avoided most of the time with FOLIC ACID.I know we are told to take it anyway but Epileptic women should take it everyday regardless in my opinion.Epilim strippes the body of Folic Acid,so if at all possible Folic Acid should be taken at least 3 months before you concieve.Over the counter you can buy 400mcg but I was given 500mcg on perscription to take daily.If every woman was to take Folic Acid as per routine like vit c then the amount of children born with nural tube defects would be reduced grately.Personally any Epileptic (man or woman) who is on Epilim should also be on Folic Acid for as long as there on Epilim,it also reduces the chances of you being low on Iron too.Hope it helps
PINKY1

 
Old 10-06-2005, 05:31 AM   #4
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pops HB User
Re: Juvenile Myoclonic epilepsy

My son is 9 and suffered from FVS. He was diagnosed about a year old as he was so floppy and has certain traits. This has also led to him been diagnosed with autistic spektrum disorder.
My daughter is 5 and has displayed none of the FVS characteristics. With my daughter my wife took 4x the reccommended dose of folic acid up to a month before the baby was born.
A word of caution though my wife died at 36 in july 2004 of breast cancer which has recently been linked in the press to high doses of folic acid.

 
Old 10-06-2005, 06:29 PM   #5
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Re: Juvenile Myoclonic epilepsy

Hi Fionaa

Although you may not be thinking about getting pregnant just now it's always a good idea for anyone on long term medication to consider the possible effects of any medication plan. I was diagnosed with JME aged 17 and was put on Lamotrigine (Lamictal) immediately, due to the its high success rates for JME and for its safety regarding pregnancy. Although monotherapy Lamictal didn't work for me (decreased my gm's substantially but not completely and didn't control my absences or jerks). After trying out Clonazepam I went onto Lamictal with Epilim (sodium valproate). Epilim was my nightmare drug due to depression leading to shutting everyone out, weight gain and lack of interest in anything (apart from singing and dancing - my outlet and saviour) and also cognitive difficulty which is common with most aed's. I will never touch Epilim again in my life and laughed in my neurologist's face last year when he talked about trying it out again. Although it is a wonder drug for some people it can also have dramatic side effects. Apart from the depression I gave it up because of its possible effects on any future children I may have.

Most women with JME and on JME drugs still have healthy children, but it is still essential to take this into consideration when planning your medication. Different drugs have higher risks than others in certain complications, such as facial deformities and learning difficulties, and on certain drugs it is not advisable to breast feed. However coming off medication or changing to a different "safer" drug regime which increases your seizures is highly dangerous. Some epileptic women opt for a cesearian section, which may be the safest option for some but is unnecessary for many, and being a major operation can cause problems in itself. This is now being more and more discouraged by most neurologists and gynecologists.

So although statistics and medical research indicate things which you need to consider, just like epilepsy every woman, pregnancy, delivery and child is different. These are difficult decisions we have to make and we can only do our best in making them.

Good luck.
Eilidh
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Old 10-11-2005, 05:12 PM   #6
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Re: Juvenile Myoclonic epilepsy

Hi Rinoa

I can't say I've had chronic fatigue, it was perhaps appoaching that whilst on Epilem - I only made it to about 60% of uni lectures on when Epilem as compared with a generally perfect attendance rate (and my house was 5 mins walk from the lecture halls), but don't think this classes as chronic as I did make some. I've always had concentration problems on anti-epileptic drugs, clonazepam (Rivotril) and Epilem were the worst for this, mono-therapy Lamictal wasn't bad. Total brain fog was only really achieved in Epilem, although writer's block was very common on Rivotril. I've never had any problems with fluttering heartbeats, so don't know anything about it. These other symptoms however sound like common side-effects of anti-epileptic drugs - what drugs are you on?

Eilidh
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Old 10-12-2005, 03:59 PM   #7
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Re: Juvenile Myoclonic epilepsy

Rinoa,
My 10 year old son takes depakote and has the same problems. He has absence and TC seizures. He may progress to JME but it's too early to tell. How much depakote do you take? My son takes 1250 mgs depakote per day and 1000 mgs Keppra. Depakote has been linked to cognitive decline. Most of the older AED's have actually. Newer ones are better. Do a web search since as we can't post websites here. I really worry about my son. He too has a hard time always understanding what is said. I'm not sure if it's just a focus issue or what. He's more kinesthetic and visual to begin with. Not much of a verbal learner. He also has a horrible time concentrating on anything that takes a lot of effort. I don't know how these doctors expect people to function in life. Especially kids and young people in school. Sorry I'm not being very positive but all this inattention and spaciness is really impacting my son and our family life.

Julie

 
Old 12-02-2005, 08:13 AM   #8
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Wink Re: Juvenile Myoclonic epilepsy

I was 19 when I was diagnosed with Juvenile Myoclonic Epilepsy with petit mal seizures. I was actually around 16 when I first noticed things, but didn't get it checked out till I was 19 when the problems progressed while I was in college. I'll try to answer some of your questions to the best of my knowledge with what I've learned throughout the years with my experiences. I'm not a doctor so you should definitely talk to your doctor about all your concerns. I'm currently 26 and my husband of 2 1/2 years and I are starting to plan a family. First of all, it's especially important that when you want to start a family, that you plan accordingly, if at all possible. It's not a good idea to have an unplanned pregnancy while on Depakote or any other AED. It's also important to be taking 4mg of Folic Acid every day starting now to protect your reproductive system. The normal recommended daily allowance is 400 mcg (which is .4 mg) but since you can often be in your 2nd month of pregnancy before you even know you are pregnant its important to take 4 mg of Folic Acid even before you start trying to have children. This is really important for women with epilepsy. I've met with 2 epileptologists and 3 neurologists over the past 7 years and sorry to say that it is most likely that you will live with this kind of epilepsy for the rest of your life. The good thing though is that it is well controlled with one medicine usually, you can have a normal life, and it is the mildest form of epilepsy you can have. I had an epileptologist tell me that if he had to choose which type of epilepsy to have he would choose JME. Also, I don't know if you've heard of the Vagas Nerve Stimulator, but I've asked about it with my docs and they've said that its not a possibility because JME is not in a specific area of the brain. They can't pinpoint the exact location of it for VNS therapy. It works better for those that can't control their seizures with medications. To answer your question about getting pregnant and delivering a healthy baby, women with epilepsy have a greater than 90 percent chance of having a healthy baby. In addition to that, women with epilepsy have a 4-6% chance of having a baby with a birth defect compared to 2-3% for women without epilepsy. Another thing to take into consideration is that you should never go off your medicine unless your doctor has told you to do so. If you should happen to get pregnant, it would do more harm than good to be off your medicine, especially if you were to have a seizure while pregnant. That can cause miscarriage or stillbirth. It's just not safe to do that for your health now and when you decide to get pregnant. It's good that you are looking into this stuff now. There are tons of helpful resources out there. Take advantage of these resources and you will become better educated on the subject which will benefit you in the long run. Sorry this is so long! I hope it helps.

Last edited by melmo524; 12-02-2005 at 12:59 PM.

 
Old 12-02-2005, 08:48 AM   #9
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Re: Juvenile Myoclonic epilepsy

A few more things I wanted to mention! It's a plus when you are trying to get pregnant (and I know it's not a concern for you right now, but for future reference) that you stay on as low of a dose as possible before, during, and after pregnancy and get regular blood tests and checkups. You'll have to get more checkups than usual because you will have a high risk pregnancy. There is also an epilepsy pregnancy registry you can sign up for when the time comes. I'm not sure what's involved but it gets more women like us involved so we can help to get more information out there on the subject. As I mentioned before, my husband and I are planning to start a family within the year. We were told to plan 3 months in advance so we are currently at the beginning of our first month of preconception planning. I will be participating in the pregnancy registry. Well, good luck and I wish you the best. Just know that you aren't alone in this. Thanks for letting me blab on and on.

Melmo524

 
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