Newly diagnosed son with Juvenile Myoclonic Epilepsy

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Hi there, I'm looking for some guidance. My son had a seizure 4 weeks ago. I guess it was a grand mal - he lost consciousness, dislocated his shoulder, hit his head. Someone who saw it said he made a very strange face and then fell and was very stiff. He was officially diagnosed with JME 6 days ago although they admit it is their best guess at this time. He hasn't had other types of seizures and there is no history of jerks. His EEG did show abnormal activity leading them to the diagnosis. He has lost his vision (close up) twice in the 3 weeks before the seizure but they cannot directly tie that to epilepsy. He has been seizure free since starting the medication. He strongly feels that he will never have another seizure again. He heard one little part of what the Dr. said which was something like 'some times with medication some people never have another seizure' and he believes this will be him. He does not want to learn anymore about it and he doesn't want to take any major precautions because he doesn't think he needs to. I'm very frustrated and he thinks I'm being overprotective. The Dr. said he should get 9-10 hours of sleep per night (which would mean 8:30 pm on school nights) and my son thinks that's ridiculous. I realize he needs time to digest this and I'm of course nervous that he will have another seizure. I am not being a freak with him but I am talking about it a lot trying to educate him and get him to understand the situation. I am also in kind of a time crunch because he is signed up for a French Exchange Program and is planning to go to France (we are in NY) in March! I would really prefer to have a much longer time under our belts to really know what this disorder will look like for him. I guess what would be most helpful is to know - are there really a lot of people who have only had one seizure and then never again? I'm trying to find out as much as I can, inform all the teachers, look into a 504 plan at school and take common sense precautions. My son's father seems to be in agreement with my son and says that he will sleep when he feels tired (not necessary getting 9-10 hours of sleep), he's not in favor of a 504 and they kind of brush me off like 'that's just your over-protective mom'. I'm trying to find balance and any suggestions or information would be helpful. Thank you!

Comments

Your son is a teenager so it

Submitted by Amy Jo on Wed, 2017-11-22 - 22:34

Your son is a teenager so it’s hard for one to believe anything bad is going to happen to them. It’s the worst time to get any big deal diagnosis. This is not going to resolve quickly and the motivation will have to come from him (not you, unless you have some magic method, seems to be an age old issue, my brother and I ponder this every week when talking about our teens).That said, he might be lucky and not have another seizure, happens for some, just unlikely as there are bound to be a few more just getting settled on the meds. Poor sleep is a very common trigger, so is stress. So you’ll probably learn quickly if he pushes the envelope. You can’t explain this completely to most teens, they have to learn limits without taking shortcuts. Your job is to mitigate the worse impacts where possible. Most seizures are not emergencies. Know what is an emergency, at the very least get a 504 with health accommodations listing when 911 should be called. Teens are unable to go to bed early (there a fantastic TED talk on teens and sleep, our district just moved high school start times to 8:30) so if more seizures occur, he might need accommodations about not needing to be at school for 0 or 1st period, might need alternate ways to get course credit if there’s not enough time in remaining periods to satisfy his graduation requirements. There is an epilepsy manual from 2011? on wrightslaw if your son needs real support in a 504 or IEP.

Teens think that they can do

Submitted by just_joe on Thu, 2017-11-23 - 17:33

Teens think that they can do anything. Been there done that.I am the person that had seizures when I was a teen. I started with the grand mal at school. In them the person loses consciousness and does things other then just fall and convulse. For me it started a few minutes after the bus got to school. I had time to get something to drink which I did and was talking to friends. That is where I finished remembering what happened. I found out by talking to those friends and others that saw my seizure many of the other things that happened. I pulled my arms inside my jacket and was still walking around and talking. At the jr. high school we had asphalt basketball courts by the gym. Well we always had benches outside the doors to the gym classes and I stacked up 2 benches on top of one another. I climbed on top of them. I then pulled my jacket over my head and stood up and fell face first on the asphalt. some of the seniors along with 2 coaches were carrying me into the nurses office when I did come to. I said Hi to them and asked why the seniors were carrying me. The next thing I remember was Mom setting down by me in the bed in the nurses office. I was taken to the doctor. Doc prescribed meds and I took them. Your son can have more then one type of seizure. He may have a myoclonic seizure at first. But they can generalize. Meaning move from one area and cover the entire brain. I was 13 when that happened to me. I didn't have another grand mal seizure. But I did have other seizures that today would land in the partial seizure rang and I have had all of them. I have had generalized seizures which are not grand mal. SO the best think he can do is research the different types of seizures he can have. This site has all kinds of information in it that is there for him to use. I wish it had been around when I was having my seizures and was a teen. I kind of knew I wanted to know more about what I had since I wanted to know anything that might hinder me from doing the things I wanted to do in school and everywhere else. I found out about the different seizures I might have. I found out about the different medications I was taking and some others. I wrote a report on the subject. My English teacher had me read it to all of her classes. My science teacher heard about it and I read it to all of his classes. The Vice Principle heard it and I read it to the entire student body. You see I wasn't the only person that had epilepsy and the information in my report told them what to do if they saw someone in a seizure. Told them to notify the nurse or an adult so they could get someone there in the case of an emergency. That report was still being read 5 years later.Your son if kind of listening to what he wants rather then taking in all the information and using common sense. Yes there have been some people have a seizure and never have another one. But that number is very very low. I hope this helps and your son gets the assistance he needs and your husband and he do research. Thinking one will never have another seizure is not the way to accept epilepsy. The way to accept his condition is by researching and finding out everything that might happen but not over preparing.Stress is on the list and so is lack of sleep. But there are triggers not listed that do happen. I slept little becaue I was a paperboy and folded and delivered papers. Stress has never bothered me. Now that trigger that did was getting to hot to fast. Doc knew it but had never said anything about it until I had a seizure and was working in cafeteria.Hope this helps and your son gets the assistance he needs.Joe

Teens think that they can do anything. Been there done that.I am the person that had seizures when I  was a teen. I started with the grand mal at school. In them the person loses consciousness and does things other then just fall and convulse. For me it started a few minutes after the bus got to school.  I had time to get something to drink which I did and was talking to friends. That is where I finished remembering what happened. I found out by talking to those friends and others that saw my seizure many of the other things that happened. I pulled my arms inside my jacket and was still walking around and talking. At the jr. high school we had asphalt basketball courts by the gym. Well we always had benches outside the doors to the gym classes and I stacked up 2 benches on top of one another. I climbed on top of them. I then pulled my jacket over my head and stood up and fell face first on the asphalt. some of the seniors along with 2 coaches were carrying me into the nurses office when I did come to. I said Hi to them and asked why the seniors were carrying me. The next thing I remember was Mom setting down by me in the bed in the nurses office. I was taken to the doctor. Doc prescribed meds and I took them. Your son can have more then one type of seizure. He may have a myoclonic seizure at first. But they can generalize. Meaning move from one area and cover the entire brain. I was 13 when that happened to me. I didn't have another grand mal seizure. But I did have other seizures that today would land in the partial seizure rang and I have had all of them. I have had generalized seizures which are not grand mal. SO the best think he can do is research the different types of seizures he can have. This site has all kinds of information in it that is there for him to use. I wish it had been around when I was having my seizures and was a teen. I kind of knew I wanted to know more about what I had since I wanted to know anything that might hinder me from doing the things I wanted to do in school and everywhere else. I found out about the different seizures I might have. I found out about the different medications I was taking and some others. I wrote a report on the subject. My English teacher had me read it to all of her classes. My science teacher heard about it and I read it to all of his classes. The Vice Principle heard it and I read it to the entire student body. You see I wasn't the only person that had epilepsy and the information in my report told them what to do if they saw someone in a seizure. Told them to notify the nurse or an adult so they could get someone there in the case of an emergency. That report was still being read 5 years later.Your son if kind of listening to what he wants rather then taking in all the information and using common sense. Yes  there have been some people have a seizure and never have another one. But that number is very very low. I hope this helps and your son gets the assistance he needs and your husband and he do research. Thinking one will never have another seizure is not the way to accept epilepsy. The way to accept his condition is by researching and finding out everything that might happen but not over preparing.Stress is on the list and so is lack of sleep. But there are triggers not listed that do happen. I slept little becaue I was a paperboy and folded and delivered papers. Stress has never bothered me. Now that trigger that did was getting to hot to fast. Doc knew it but had never said anything about it until I had a seizure and was working in  cafeteria.Hope this helps and your son gets the assistance he needs.Joe

Teens think that they can do anything. Been there done that.I am the person that had seizures when I was a teen. I started with the grand mal at school. In them the person loses consciousness and does things other then just fall and convulse. For me it started a few minutes after the bus got to school. I had time to get something to drink which I did and was talking to friends. That is where I finished remembering what happened. I found out by talking to those friends and others that saw my seizure many of the other things that happened. I pulled my arms inside my jacket and was still walking around and talking. At the jr. high school we had asphalt basketball courts by the gym. Well we always had benches outside the doors to the gym classes and I stacked up 2 benches on top of one another. I climbed on top of them. I then pulled my jacket over my head and stood up and fell face first on the asphalt. some of the seniors along with 2 coaches were carrying me into the nurses office when I did come to. I said Hi to them and asked why the seniors were carrying me. The next thing I remember was Mom setting down by me in the bed in the nurses office. I was taken to the doctor. Doc prescribed meds and I took them. Your son can have more then one type of seizure. He may have a myoclonic seizure at first. But they can generalize. Meaning move from one area and cover the entire brain. I was 13 when that happened to me. I didn't have another grand mal seizure. But I did have other seizures that today would land in the partial seizure rang and I have had all of them. I have had generalized seizures which are not grand mal. SO the best think he can do is research the different types of seizures he can have. This site has all kinds of information in it that is there for him to use. I wish it had been around when I was having my seizures and was a teen. I kind of knew I wanted to know more about what I had since I wanted to know anything that might hinder me from doing the things I wanted to do in school and everywhere else. I found out about the different seizures I might have. I found out about the different medications I was taking and some others. I wrote a report on the subject. My English teacher had me read it to all of her classes. My science teacher heard about it and I read it to all of his classes. The Vice Principle heard it and I read it to the entire student body. You see I wasn't the only person that had epilepsy and the information in my report told them what to do if they saw someone in a seizure. Told them to notify the nurse or an adult so they could get someone there in the case of an emergency. That report was still being read 5 years later.Your son if kind of listening to what he wants rather then taking in all the information and using common sense. Yes there have been some people have a seizure and never have another one. But that number is very very low. I hope this helps and your son gets the assistance he needs and your husband and he do research. Thinking one will never have another seizure is not the way to accept epilepsy. The way to accept his condition is by researching and finding out everything that might happen but not over preparing.Stress is on the list and so is lack of sleep. But there are triggers not listed that do happen. I slept little becaue I was a paperboy and folded and delivered papers. Stress has never bothered me. Now that trigger that did was getting to hot to fast. Doc knew it but had never said anything about it until I had a seizure and was working in cafeteria.Hope this helps and your son gets the assistance he needs.Joe

Thank you Joe, that was very

Submitted by fate525 on Fri, 2017-11-24 - 11:10

Thank you Joe, that was very helpful. Super cool about that report you wrote!