Defiant Teenager-Help with my Son!!

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My son's story starts March 31 2010 It was spring break and I was getting ready for work. 6am..no reason for him to be awake, right? But I heard knocking noises coming from his room. I saw him having a seizure on his bed, his legs hitting the top bunk of his bed. He was lying on his stomach and how his back arched like that I will never know! The noise he was making, his breathing, still gives me chills. He was biting his bottom lip and massive amounts of drool were coming from his mouth. I screamed for my husband. The seizure seemed to last forever then he went into the post ictal phase. He vomited shortly after. We called 911. By the time they got to our home, he was alert enough to follow commands and answer questions but didn't REAllY wake up until we were at the hospital-about an hour and a half later , in the ER he kind of just snapped out of it and asked "What's going on?" All his lab work, EEG, MRI, CT scan--EVERYTHING was negative. A neurologist was consulted and never actually came to the ER to see him, just got test results and our story from the nurse but put him on Keppra. They did the CT and labs in the hospital, but the MRI was the next day and the EEG was the day after that. So he had these tests done AFTER being on Keppra! I didn't really understand that-but maybe it's normal practice!?? After Three weeks of watching my sons body react to being on Keppra-the falling, the dizziness, tiredness, he got back to his old self. No more seizures.... Then Sunday May 23 2010 My husband woke me up at 3am yelling that my son was having Another seizure. All I could think was WHY?? Why is this happening to HIM??? This one didnt seem as bad, no lasting after effects-muscle pain or soreness, tiredness. But emotionally--he is a wreck. He is in denial, keeps saying he didnt have another one. He already can't drive because of the first one and that bothers him SO MUCH! My heart just breaks for him. Yes there are bigger things to worry about--but to a teenager-driving is his life!! I mentioned buying a seizure monitor and I thought he would lose his mind. Said he would unplug it when I left the room, telling me not to waste my money. Saying he isn't going back to the doctor! I don't know how to help him when he is in denial like that. What tears me apart is that for his whole life he has wanted to work as a pilot and get a degree in aeronautical engineering. I don't know for a fact but I have this horrid feeling that that dream is gone. I do know people who are pilots who had epilepsy as a child, but haven't had seizures in YEARS...so I'm not sure if it will hinder his dreams or not. He is brilliant-and has excellent grades and SAT/ACT scores. He could go to any college anywhere, but what good is all that hard work with this diagnosis and what's this diagnosis going to do to his dream? I haven't mentioned this to him for fear it will send him over the edge at this point. I'm just so sad for him. Anyone else delt with the teenage definace? How do you handle it and help your child? I called another doctor today for a 2nd opinion.

Comments

Re: Defiant Teenager-Help with my Son!!

Submitted by English Mum on Sun, 2010-06-13 - 17:36

Dear Tenbears,

Reading your post resonated with me. My 16 year old academic son developed generalised epilepsy over the last two months which is proving to be drug resistant. Tomorrow is his first day back at school after two months of tests, hospitalisation and drug changes.

I live in the UK, but my son is being treated privately under our health insurance. This means I can choose the consultant and see him more often than under our NHS (publically funded system). I am rather shocked that your son was prescribed medication without even being seen by the consultant - how can your son be expected to trust someone who won't even have the courtesy to say life changing things thing to his face? I know you are looking for a second opinion - and that seems to be a very good idea, but choose carefully - one of the problems with neurologists is that they are very clever people - they have to be to be accepted for neurological training. This means that some are borderline autistic - great technically, but not so hot on the communication skills. Ask around and find a specialist in adolescent epilepsy - in a perfect world attached to teaching hospital and research centre. Once you have found this consultant, perhaps you could take the approach with your son of admitting that you were not too happy wth the first doctor and you want him to see someone more specialist to see if he has been given the correct diagnosis. You might get he an adverse reaction the first time, but I find a drip by drip approach can work over time.

Before any new hospital appointment I suggest sitting down with your son and agreeing what questions he wants answers too. Involve him as much as you can, because it is his life. I email my consultant my question list ahead of some appointments so I can make sure he covers our concerns.

Might some of your son's reluctance to accept the diagnosis be that he has already guessed that his ambitions might be thwarted? He's clearly a bright lad so he may already know or have guessed himself. May I suggest you"park" this problem for the moment. One of the things I have learned over the last two months is not to get ahead of myself. In due course, the issue of careers might be dealt with by the school or the consultant - ideally once you son has confidence in that person. You might like to do some research yourself so you are prepared if your son asks, but don't offer the information yet.

I'm not yet totally convinced about the benefit of support groups - one of the things I have had to do is keep well meaning people away - those who have had mild epilepsy, or their children do and they say quite inappropriate things to my son. He knows they are well meaning, but completely ignorant of what it is like to live with the prospect that his epilepsy is long term and unlikely to be brought under complete control. We have conversations ahead when we will have to help him plan his career around the fact that he won't be able to drive - but that is for later. Your son needs to be talking with ambitious young people who have managed to find a way through to successful careers so he can relate to them. So not "no" to support groups - just be circumspect.

However, the best guidance I can give is to recruit your son's siblings as conduits for communication. My son will often open up to his sister (and sometimes his brother) when he won't tell me or my husband. My daughter successfully got my son to see the concerns and anxieties of others in the family - he even warns us when he is about to sneeze in case we think he is going into a seizure!

And finally, may I send my very best wishes to you and all your family. It's rough ride and you need to look after yourself too. Anxiety and sleep deprivation are a poor mix. Spread the load, keep going out as a family and keep laughing.

English Mum

Dear Tenbears, Reading your post resonated with me. My 16 year old academic son developed generalised epilepsy over the last two months which is proving to be drug resistant. Tomorrow is his first day back at school after two months of tests, hospitalisation and drug changes. I live in the UK, but my son is being treated privately under our health insurance. This means I can choose the consultant and see him more often than under our NHS (publically funded system). I am rather shocked that your son was prescribed medication without even being seen by the consultant - how can your son be expected to trust someone who won't even have the courtesy to say life changing things thing to his face? I know you are looking for a second opinion - and that seems to be a very good idea, but choose carefully - one of the problems with neurologists is that they are very clever people - they have to be to be accepted for neurological training. This means that some are borderline autistic - great technically, but not so hot on the communication skills. Ask around and find a specialist in adolescent epilepsy - in a perfect world attached to teaching hospital and research centre. Once you have found this consultant, perhaps you could take the approach with your son of admitting that you were not too happy wth the first doctor and you want him to see someone more specialist to see if he has been given the correct diagnosis. You might get  he an adverse reaction the first time, but I find a drip by drip approach can work over time.   Before any new hospital appointment I suggest sitting down with your son and agreeing what questions he wants answers too. Involve him as much as you can, because it is his life. I email my consultant my question list ahead of some appointments so I can make sure he covers our concerns.   Might some of your son's reluctance to accept the diagnosis be that he has already guessed that his ambitions might be thwarted? He's clearly a bright lad so he may already know or have guessed himself. May I suggest you"park" this problem for the moment. One of the things I have learned over the last two months is not to get ahead of myself. In due course, the issue of careers might be dealt with by the school or the consultant - ideally once you son has confidence in that person. You might like to do some research yourself so you are prepared if your son asks, but don't offer the information yet.   I'm not yet totally convinced about the benefit of support groups - one of the things I have had to do is keep well meaning people away - those who have had mild epilepsy, or their children do and they say quite inappropriate things to my son. He knows they are well meaning, but completely ignorant of what it is like to live with the prospect that his epilepsy is long term and unlikely to be brought under complete control. We have conversations ahead when we will have to help him plan his career around the fact that he won't be able to drive - but that is for later. Your son needs to be talking with ambitious young people who have managed to find a way through to successful careers so he can relate to them. So not "no" to support groups - just be circumspect.   However, the best guidance I can give is to recruit your son's siblings as conduits for communication. My son will often open up to his sister (and sometimes his brother) when he won't tell me or my husband. My daughter successfully got my son to see the concerns and anxieties of others in the family - he even warns us when he is about to sneeze in case we think he is going into a seizure!   And finally, may I send my very best wishes to you and all your family. It's rough ride and you need to look after yourself too. Anxiety and sleep deprivation are a poor mix. Spread the load, keep going out as a family and keep laughing. English Mum

Dear Tenbears,

Reading your post resonated with me. My 16 year old academic son developed generalised epilepsy over the last two months which is proving to be drug resistant. Tomorrow is his first day back at school after two months of tests, hospitalisation and drug changes.

I live in the UK, but my son is being treated privately under our health insurance. This means I can choose the consultant and see him more often than under our NHS (publically funded system). I am rather shocked that your son was prescribed medication without even being seen by the consultant - how can your son be expected to trust someone who won't even have the courtesy to say life changing things thing to his face? I know you are looking for a second opinion - and that seems to be a very good idea, but choose carefully - one of the problems with neurologists is that they are very clever people - they have to be to be accepted for neurological training. This means that some are borderline autistic - great technically, but not so hot on the communication skills. Ask around and find a specialist in adolescent epilepsy - in a perfect world attached to teaching hospital and research centre. Once you have found this consultant, perhaps you could take the approach with your son of admitting that you were not too happy wth the first doctor and you want him to see someone more specialist to see if he has been given the correct diagnosis. You might get he an adverse reaction the first time, but I find a drip by drip approach can work over time.

Before any new hospital appointment I suggest sitting down with your son and agreeing what questions he wants answers too. Involve him as much as you can, because it is his life. I email my consultant my question list ahead of some appointments so I can make sure he covers our concerns.

Might some of your son's reluctance to accept the diagnosis be that he has already guessed that his ambitions might be thwarted? He's clearly a bright lad so he may already know or have guessed himself. May I suggest you"park" this problem for the moment. One of the things I have learned over the last two months is not to get ahead of myself. In due course, the issue of careers might be dealt with by the school or the consultant - ideally once you son has confidence in that person. You might like to do some research yourself so you are prepared if your son asks, but don't offer the information yet.

I'm not yet totally convinced about the benefit of support groups - one of the things I have had to do is keep well meaning people away - those who have had mild epilepsy, or their children do and they say quite inappropriate things to my son. He knows they are well meaning, but completely ignorant of what it is like to live with the prospect that his epilepsy is long term and unlikely to be brought under complete control. We have conversations ahead when we will have to help him plan his career around the fact that he won't be able to drive - but that is for later. Your son needs to be talking with ambitious young people who have managed to find a way through to successful careers so he can relate to them. So not "no" to support groups - just be circumspect.

However, the best guidance I can give is to recruit your son's siblings as conduits for communication. My son will often open up to his sister (and sometimes his brother) when he won't tell me or my husband. My daughter successfully got my son to see the concerns and anxieties of others in the family - he even warns us when he is about to sneeze in case we think he is going into a seizure!

And finally, may I send my very best wishes to you and all your family. It's rough ride and you need to look after yourself too. Anxiety and sleep deprivation are a poor mix. Spread the load, keep going out as a family and keep laughing.

English Mum

Re: Defiant Teenager-Help with my Son!!

Submitted by GodivaGirl on Mon, 2010-06-14 - 21:26

Hello, First off, I am not a mother but I have grown up epileptic since age 5 with only a 4 yr break off my medication. It was around age 16 I ended up back on them, and doctors have no idea why. I've read everything here, your original post and the ones below. I find lots here interesting to be honest. Personally, there are times that being epileptic has made me take life in a different direction, but I've had to accept it as part of my identity and as who I am. The more I've done that, the more successful I've been in life. I never let seizures stand in the way of anything I want to do. I take meds as directed and always have. Sometimes, I just have to change things up. I grew up a sports kid - swimming, baseball, hockey, ringette, tennis, skiing, rollerblading, just about anything. If not for overtime at work, I'd still be a sports girl. I went to university for sociology/criminology and have worked in all areas of technology for about 10-12 years. It's my choice to downgrade to something with less stress, but I could always go back to technical design & project management any day. There are a few age brackets where kids just want to be kids. I went through them all. First, age 16 - I wanted to be like all my friends and drive. It's tough to see all your friends drive and know you can't. No matter what, life just sucks. Doctors always seem to say "you can't" which feels like "I never will". Just say "some day...". It is a possibility. I had my license for a bit when I was 25, but a seizure did take it away again & it's been my choice to adjust life and use public transit. I'm more ok with that. Second, age 19 (or 21) depending on where you are, friends all go to a bar and have a drink, well, due to medication - alcohol really shouldn't happen, so things don't work. It's tough to feel like you don't blend in. These days what I find as someone taking a bus with a lot of highschool kids in the morning is kids are cruel at times. If they weren't going to bug your son over seizures, there would be another reason to pick on him. If it didn't feel like life sucked for being epileptic, there would be another reason. Really, during teenage years you want to feel like the "popular kids" and seeing doctors for seizures can take that down a level or two, so being in denial is easier. However, if he wants to get things under control, the best thing. To care about himself medically, get things under control and essentially go with it. He can't let what others think count for too much. I'd say treat him like you used to before, don't put too much focus on the seizures. Focus on helping him chase his dreams & all will fall into place. Good Luck! ~GG

Re: Defiant Teenager-Help with my Son!!

Submitted by npino90 on Fri, 2010-08-13 - 19:47

Hi,

I'm a 20 year old guy and I have had seizures since I was 8. I can empathize with your son's feelings. The thing is that when I was his age I had already had epilepsy for years and had learned to deal with the social issues that tend to come with it. I've had bouts of depression and whatnot plenty of times throughout the years, but as time has passed I've rationalized and come to terms with the way things are and are probably going to be for awhile. I've been on 10 different medications over the past 12 years so I also know all about being frustrated with crappy side-effects and them just not working for me.

And on the topic of driving, I know how lame it can feel to have to ask all of your friends for rides all of the time or to have your mom drop you off somewhere when you should be able to drive like everyone else your age. I hate that I can't drive. There was a period of time that I didn't have a seizure for 2 years so I got my permit and after a year finally got a license. Unfortunately, after being able to drive for 3 weeks I had a seizure while driving home from a friend's house and drove my car right into a canal. I came to while the car was sinking and managed to get out before it went completely under. This happened when I was 17 and was pretty traumatizing. However, after a year or so that event put some things into perspective for me that I didn't get before, and that is that things could always be worse and things are for many people.

Living the epilepsy lifestyle isn't too bad, you just have to learn how to accept it and focus on what you can do to improve it rather than deny what you've been dealt in life.

Anyways, feel free to let your son know that he can email me at nrpino90@gmail.com if he wants to talk about coping with having epilepsy and/or any complications that come with going to college, etc. It might help talking to someone that has gone through the same things.

Or you can contact me with any questions that you may have on the subject.

Good Luck

-Nate

Hi, I'm a 20 year old guy and I have had seizures since I was 8. I can empathize with your son's feelings. The thing is that when I was his age I had already had epilepsy for years and had learned to deal with the social issues that tend to come with it. I've had bouts of depression and whatnot plenty of times throughout the years, but as time has passed I've rationalized and come to terms with the way things are and are probably going to be for awhile. I've been on 10 different medications over the past 12 years so I also know all about being frustrated with crappy side-effects and them just not working for me. And on the topic of driving, I know how lame it can feel to have to ask all of your friends for rides all of the time or to have your mom drop you off somewhere when you should be able to drive like everyone else your age. I hate that I can't drive. There was a period of time that I didn't have a seizure for 2 years so I got my permit and after a year finally got a license. Unfortunately, after being able to drive for 3 weeks I had a seizure while driving home from a friend's house and drove my car right into a canal. I came to while the car was sinking and managed to get out before it went completely under. This happened when I was 17 and was pretty traumatizing. However, after a year or so that event put some things into perspective for me that I didn't get before, and that is that things could always be worse and things are for many people.  Living the epilepsy lifestyle isn't too bad, you just have to learn how to accept it and focus on what you can do to improve it rather than deny what you've been dealt in life. Anyways, feel free to let your son know that he can email me at nrpino90@gmail.com if he wants to talk about coping with having epilepsy and/or any complications that come with going to college, etc. It might help talking to someone that has gone through the same things. Or you can contact me with any questions that you may have on the subject. Good Luck -Nate  

Hi,

I'm a 20 year old guy and I have had seizures since I was 8. I can empathize with your son's feelings. The thing is that when I was his age I had already had epilepsy for years and had learned to deal with the social issues that tend to come with it. I've had bouts of depression and whatnot plenty of times throughout the years, but as time has passed I've rationalized and come to terms with the way things are and are probably going to be for awhile. I've been on 10 different medications over the past 12 years so I also know all about being frustrated with crappy side-effects and them just not working for me.

And on the topic of driving, I know how lame it can feel to have to ask all of your friends for rides all of the time or to have your mom drop you off somewhere when you should be able to drive like everyone else your age. I hate that I can't drive. There was a period of time that I didn't have a seizure for 2 years so I got my permit and after a year finally got a license. Unfortunately, after being able to drive for 3 weeks I had a seizure while driving home from a friend's house and drove my car right into a canal. I came to while the car was sinking and managed to get out before it went completely under. This happened when I was 17 and was pretty traumatizing. However, after a year or so that event put some things into perspective for me that I didn't get before, and that is that things could always be worse and things are for many people.

Living the epilepsy lifestyle isn't too bad, you just have to learn how to accept it and focus on what you can do to improve it rather than deny what you've been dealt in life.

Anyways, feel free to let your son know that he can email me at nrpino90@gmail.com if he wants to talk about coping with having epilepsy and/or any complications that come with going to college, etc. It might help talking to someone that has gone through the same things.

Or you can contact me with any questions that you may have on the subject.

Good Luck

-Nate

Defiant Teenager-Help with my Son!!

Comments

Re: Defiant Teenager-Help with my Son!!

Submitted by English Mum on Sun, 2010-06-13 - 17:36

Re: Defiant Teenager-Help with my Son!!

Submitted by GodivaGirl on Mon, 2010-06-14 - 21:26

Re: Defiant Teenager-Help with my Son!!

Submitted by npino90 on Fri, 2010-08-13 - 19:47

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