My 12 Year Old Daughter Has Juvnile Myoclonic Epilepsy Need Advice.

i have a 9 year old sister that has this too. she also acts like there is nothing wrong. hers are mainly in her face, and dont last long but i guess it is very comon to outgrow it. she would know if she didnt feel right. she will let you know when they occur. dont make to much of it to her because then you will make it a big deal and scare her. be honest with her and let her know to tell you any time something happens. take care and good luck

Hi J.
I was diagnosed with Epilepsy when I was 10. I was fortunate in that I outgrew mine. But I was on several medications before they found the ones that worked for me. Things were very stressful for my family and my mom was extremely overprotective. My mom also stressed out over the fact that I just thought everything was fine and didn't realize what was wrong. The thing is that I knew exactly how upset everyone was. I knew that petite malls and grand malls were not normal. I just wanted to be treated normal. I acted like nothing was wrong because everyone around me was freaking out. Does this make sense to you?
Talk to her openly. Tell her everything that she needs to know. Don't try to "protect" her. This is happening to her and she needs to deal with it and live with it. Remember this affects HER not just you and the siblings. In turn she needs to know how it worries you and that you love her and are doing what is best for her to have a healthy, happy, normal life.
I wish you the best of luck. Epilepsy has come a long way in terms of treatment and the way people handle those with it as opposed to when I was a kid. My great aunt thought I should have been institutionalized. Thank God people are more educated.

I have freind who has been dealing with epilipsey since he was 3 years old. It was him (and a couple of other friends with other condtions) that i made sure I was certified in CPR and frist aid. This way if something was to happen I was prepared. I recommend that evey parret should have this along with an updated medical book in thier home. I never thought i would ever need to use it, but I have. I am glad I did it. Good luck to you and your family.

HI J.,

I am the oldest of 6 kids and my brother was diagnosed with JME around the same age as your daughter, he is now 24.In the beginning he was also very quiet about what he was feeling.It was very hard on my mom, she worried about him constantly and that drove him crazy.My Dad went through a period of denial, and questioned the diagnosis until he had a few more seizures.
Now that he is older, and much more mature, he opens up much more.He has learned what can trigger his seizures (sleep deprivation and stress)and does his best to stay calm and well rested. He is generally well controlled on his medication. He leads a very normal life. He has a great group of friends that he met in college, that are around in the rare event of a breakthrough seizure. He controls as much as he can, and does not let the rare seizure slow him down.
Hang in there, it will get better. Trust your instincts, get second or third opinions and find a neurologist that both you and your daughter feel comfortable with.
Good luck to you and your family, sounds like she has a great support system.

Don't be afraid. Its very likely this is temporary. I know its treatable. If you don't make a big deal out of it, neither will she. The last thing a 12 year old wants is to feel self-concious.

7 years ago my 20 month old was diagnosed with myoclonis. He couldn't even sleep, he would "seize" about every 40 minutes. They were mild jerks, not real epileptic - type seizures. One of the meds prescribed was Klonipin, or Chlonazepam. I think it comes in chewables. It was a very safe drug. I know of two other girls in his class that have taken it. Ethan took it for about 3 years until we were able to wean him off. Now the only time he jerks is right before he completely falls asleep, and it doesn't wake him up.

Don't be afraid of the meds, just research them. Ask around, its likely that another student in her class takes anti-seizures.

Get a 2nd opinion if you want, or just follow the lead of your dr. Although I mentioned a medication, I am not in the medical field and am unqualified to prescribe meds.

The drs. told us he grew out of it, but we believe God healed him. Either way, we're both getting sleep.

Hang in there. You sound tough. You'll make it!