Dealing with a teenage boy.....new onset seizure disorder.

Teresa - posted on 08/25/2009 ( 14 moms have responded )

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Hi my name is Teresa and my 16 yr old son was recently diagnosed with Juvenile Myoclonic Epilepsy. He had his first seizure in Dec 08, second one in April 09. He is on medication and as long as he takes it, he has not had any seizures. If he misses a dose.....well, he has one. I am a nurse and have taken care of many patients with seizures, but its a different story when it's your child. I have learned many more things than I thought I would ever need to know. Most of the time I have no problem dealing with this but there are some days when all I do is cry. Will he be able to lead a normal life, have a job, have a wife, have kids, ever drive a car, etc.... I know the answers to this as I know many people who have epilepsy and lead productive lives. Is this normal to feel like that??? I feel so helpless alot of the time and often alone. I guess I just need some encouragment from other moms and advice on how to deal with this. Thanks for your time and appreciate any and all advice.

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Peggy - posted on 11/18/2009

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Hi Teresa, 2 months after my son turned 18 he had a seizure. His father had 3 seizures at the age of 32 and was told it was epilipsy. His last seizure killed him when he totalled his truck on the highway. Now my son has them. Danny (my son) started having seizures 1 every month for 7 months before we found the right medicines. I was so lost, and didn't have any answers. All the EEG's, MRI's and CT scans have always been normal? Now he takes both Keppra and Depakote and has been seizure free for 9 months and counting. He is very dedicated to taking his medicines, in the am first thing and in the pm last thing. He is very normal, NOW.
I pray your son will get into the habit of taking his meds. He will be the same ol kid he used to be.

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Joan - posted on 04/08/2014

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I wish I could just cry with you ! And then try to figure out what's best for our sons . Fear is so big. ! I too am in the medical field . It's good but. , bad to know more about what things can happen to people too. ! Keep strong. !!

Angela - posted on 10/17/2013

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Hello Teresa,my daughter is 14 and she was dignosed with jme about a year ago.This is the hardest thing Ive ever been threw.I notice her jerking and dropping things so I took her to her dr and blood test and eeg was done.EEG was abnormal said she had jme and was put on meds,meds didn't work so they've changed them many times.The horrible thing is she now having tonic clonic seizires 3 in a month.Shes taking klopin twice a day and lamitcal 25 mg twice a day.I have a question my daughter has never lost control of her bladder when she has a tonic clonic but everyone Ive talked to say when you have epilepsy you will loose control and pee on yourself. I have taken her out of school and Im scared to death to let her out of my sight,im afraid she going fall and hit her head again and next time she may not be so lucky.
oh my name is Angela and her name is Alyssa.

Camille - posted on 12/28/2012

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My son had his first seizure at 13, he is now 15. He has been on 3 different meds. It seems his body gets used to them, they increase the dosage and the seizures go away for about 3 months and life is good..but then BAM they come back. His seizures can last anywhere from 3 min to over an hour. He can't go on overnight scouting activities unless his father is able to go with him, and so he's lost much interest in scouting because he can't ride a bike for fear he could have a seizure and have a bad fall, he can't swim anymore (he loved it) for fear of seizure and drowing. He has had seizures at school and then I get the phone call and he can never remember anything so I have to explain again to teachers that they need to review again what he needs to know for his classes. I am frustrated and yes I cry alot. It's very frustrating for all of us when he goes in for EEG's and they get a reading and then after a while they don't and it's back to square one..That's when I cry the most! Yes, Teresa it is alot to carry..I hope things are better for you and your son.

Vick - posted on 10/30/2012

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hi teresa i know this was posted in 09 but i just got a similar diagnosis of my son..its a lot to carry

Devin - posted on 08/08/2012

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My 16 yr old son has been getting bad headaches and would get sick(very lathargic,nausea,vomiting) for the last 2 yrs or so in nov(black friday)2011 he started feeling bad and had seizure called ambulance which he was starting to come around by the time they got here and I told them at the hospital jus to be on safe side the he tried marijuana the previous week for the first time and I think got wrote off didnt really consider him having a seizure and was told he probly smoked again and had a marijuana overdose(he hadnt left house that day nor did anyone come over). In no way did I condone him smoking it but i also was no angel when I was young and its not possible to overdose and I was actually glad that he came to us and told us he did it.(jus not a kid that runs the streets always been good).so we did eeg that came back fine.So August 1st last wk he was sitting in room with my brother in law right in middle of sentence he said he fell face first in dresser and started convulsing.we just had mri and eeg they said mri fine but eeg abnormal he'll have to be put on medicine we go tomorrow to discuss results and what medicine.it was nice to be able to read everyones stories on site like your just so helpless when its your child that is totally normal otherwise,he is adhd and did quit taking his medicine over the summer but i'm also just looking for any answer and i'm starting to understand i might never get one.I'm only at the beginning of this journey,but already all those things have came up and thats why this is nice to be able to be on here is it going to happen at school?now i cant get my license,i dont want to go out really,how is the medicine going to affect me?will i ever be ok?This poor kid lost his grandpa suddenly(who lived with us)in 9/2011 his dad very sick and was in hospital in Jan still not doing good and lots of other crap a kid shouldnt have to deal with and now this but I also realize it always could be worse.thanks for letting me vent needed that my prayers go out to all of you.devin hagenhoff

Brandy - posted on 12/08/2010

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I am fighting the same fight asking the same questions and battling a deep depression.Be leave me I know where you are.My son is 17 and will barely leave the house for fear of having a seizure.He has not yet had a girlfriend,drove or ever had a job.My fear is the very same as yours and im so glad I am not alone.I cry alot.

Jennifer - posted on 12/08/2010

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My son was 14 with his first tonic-clonic seizure. No risk factors, normal CT, normal labwork. That was his "free" seizure. His second seizure, 2 months later, earned him medication. He seized off an on for about 2 years, more so from skipping doses. He just didn't want to take meds.

Finally, after staying on meds (and moving in with me, after living at his father's house), he was seizure free for 2 years. He had a normal EEG, and was allowed to taper down slowly from the med. He had several months of no seizures, but then seized again on Black Friday of this year. He was started back on Depakote. He's now 18 1/2 yrs old, has never gotten his driver's license, graduated from high school, has no job, and sits at home all day playing video games. He's a good kid - just no ambition, no drive. He knows he needs to take meds for the rest of his life now.

I'm pretty much in the same boat as you. Trying to deal with/parent/support a teenage boy with epilepsy.

I'm also an RN.

Elaine - posted on 12/06/2010

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Hi, my 16 yr old son had his first seizure 8/1/10. It was expected to be a one time event. He was having absence seizures and we were not sure if it was a seizure or just a teen lapse of attention. His seizures happen within an hour after he wakes up, so this first seizure was witnessed by his friends when he was stay overnight. He had a second seizure 6 days later that he didn't tell me about because he was concerned about how much it would cost our family, no insurance. Families should be aware of this I found out when he had the 3rd seizure on 11/21/10, I have found some help for the cost, he is now on MediCal, but the share of cost is almost all my monthly income. The hospital were his emergency service is trying to help us with the cost. So always ask if there is a program that may be able to help. We are now in the testing phase and will hopefully know more in the coming weeks. My parents were psychiatric technicians,so I was exposed to the procedures and handling of such conditions and face it as a matter of fact. I think my strength helps my son not feel to distraught by this change in his life. I wish all of you and your loved ones the very best!

FARHANA - posted on 12/01/2009

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Hi there, my son is 10 & was diagnosed with petitmal epilepsy @ 18mths. I think all moms of Epileptic children worry whether dey will lead a normal life. As one friend put it, it will be normal but your 'typical' normal! Unfortunately from all that I have gathered, every child with epilepsy has some disorder, ADHD, behaviour disorder, learning disabilities, etc. My son has his EEG & MRI scans done regularly, but dey all come clear. He is ADHD, and has behaviour pblems. Its tough! I so agree with Sharon, there should be more awareness & medical & espec educational assistance for kids & adults in this situation. Mind you, I have learnt more in this group in the last two months compared to the last nine years with drs, pysch, neuros & pyschologists. We will all be fine as long as we support each other and know that our kids are different, yet very special. I wish you & all the other moms everything of the best!! Take care, Farhana

Sharon - posted on 11/30/2009

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Hi,
My son had a brain injury when he was 16. He has had seizures ever since and was put on lamictal That worked for a while, but recently his seizures have gotten worse! He is now 22 and is on lamictal 400 mg and topromax 100mg, and is still having uncontrolled seizures about once per week, They come with no warning, and he works in construction,.He has no health insurance so no dr. will do an MRI and he seems to be getting worse and I can't find a doctor to care! I want to get him disability or medicare or some kind of assistance , but no luck yet! It is very frustrating and I worry non-stop,. He also suffers from TBI so he behaves immaturely and has poor decision making skills, and with no health insurance and being an adult , it is very difficult to get him the help he needs! There needs to be more help and concern out there for kids and adults in these situations so they don't have to remain victims of a terrible system of politics and buracracy!

Paula - posted on 11/23/2009

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Hi,
My son suffered a head injury when he was 12 and had 3 seizures in the emergency room. He was prescribed Dilantin and after being seizure free for a year, he was weaned from the medication....because of the side effects and lack of seizures.
He's 34 now and married.....and experiences seizures at least once a week. This started when he was 19....after being seizure free for nearly 7 years. His seizures originate from the spot in his brain where his head injury occured (yes, he's had the EEG's and every study done)......so it just goes to show that the brain is a very unpredictable body organ.
He's resigned himself to not being able to drive a car....his first car was a Firebird!!! And he paid for it with his earnings from his job. BUT....he maintains a full time job....his company knows that he has a seizure disorder that is not fully controlled by his medication.....and knows that he can do his job in spite of the seizure disorder......probably better than some of the other people that do the same job in other locations within the company.

Annette - posted on 11/21/2009

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I know exactly how you feel, my ds is almost 15 and he started having seizures at age 11. He has been asking about drivers ed, but that is just not an option, because he keeps breaking throught the medication. It's all so very scary and sad. He is dealing with it though and always takes his meds. hang in there!

Tracy - posted on 10/19/2009

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hi

my daughter has just turned 13and started with seizures in the last year, she was found unconscious on living room floor panic stricken i was trying to sit her up when i noticed pinkish dribble coming from her mouth, this was put down to a water infection, nothing happened for 6 monthes ever since then she has had two full seizures and a few what i call top half (ie head face and arms) she had her e nurse thinks a absnt seizure in school but as yet we are no nearer the truth as to what is happening as her eeg and sleep deprevation eeg/ecg have shown as normal.

i am doing my best to make sure she leads as near a normal life aspossible, but with the added suspicion of aspergers/dyspraxia i try to make sure she follows all the rules, having and answering her phone, that she is accompanied by her sister (11) when out playing, im sure your son will lead as near a normal life as possible ifas you say he takes his meds, as far as im aware driving might be out of the question untill he has been seizure free for 3years (i think), i know a few epileptics who are married have children and work. being new to the world of seizures im hoping to learn all i can and chat to other mums with children who are in no mans land like i feel i am at the moment. good luck to you and your son for the future i hope all goes well for you both.

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