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14yo son w/ JME
Mon, 03/14/2005 - 20:41HI all.. I am new here and looking for some info. My son had a tonic-clonic in May 2004. He actually had 3 in 1 week but we didnt know about them until the 3rd one. I saw it myself and it was the scariest moment in my life. He spent 4 days in the hospital with normal EEG and MRI. But the docs decided that 3 seizures in a short period meant he would be treated with meds for a limited amount of time. He was given dilantin for 3 mo. Then they switched him to Depakote 3x a day. In Sept we expressed how it was hard for him to take it that often becuz he was in school and playing sports after school and finding that he was tired alot. So, they switched him to Depakote ER. He takes 1000mg at night before bed. He has had no T-C's at all! BUT since Dec, we have noiticed he was sluggish, tired, and just not himself. His levels have been checked with no problems so we decided to keep things the way they were for a while.
A few weeks ago, my dh and I were talking to our son, as he was laying on the couch. It seemed as though he was looking at us but wasnt hearing us. A few seconds later, he "snapped" out of it himself and said "huh? what?" I didnt think much about it, but became concerned when it happened again in the car less than a week later. And I got news from 2 of his teachers that he was failing thier classes. He has ALWAYS been an A-B student who didnt have to try very hard. We contacted his neuro ASAP and luckily we had a scheduled appt the week after so we discussed alot then.
Her theory is that he has JME and he could be having absence seizures in school. She also thinks he could be a little depressed. This concerns me ALOT! Everything I have read mentions depression, but doesnt say its a normal side effect. We are trying to find a therapist to help him and trying to work with the teachers but some of them just dont seem to care.... but I wont go into that! He is the type of kid who can be hard on himself ifhe doesnt do well, so failing 2 classes can be putting alot of stress on him which can cause more seizures. He also is a very good athlete and will be the starting pitcher for JV this year. If he fails he wont be allowed to play - which will cause more depression! CAN ANYONE TELL ME IF THEIR TEENS HAVE EXPERIENCED THIS AND WHAT YOU DID TO HELP??????? It breaks my heart to see him struggle so much. We have a sleep deprived EEG scheduled in 2 weeks but the 3rd term ends in 4 weeks and I need to help him ASAP. PLEASE HELP! And if anyone has a similar story, I may be willing to let him communicate with them so he can know hes not alone! THANKS!! :)
Comments
RE: RE: 14yo son w/ JME
Submitted by Jennifer65 on Wed, 2005-03-09 - 16:48
{{{hugs}}} Ferrhi - you and your son have been through alot. I know how hard it is to keep hopeful. I was in a state of total despondency yesterday. Some days are better than others. But there is always hope and who knows maybe six months from now things will be much better for our children.
I know what you mean about lowering your expectations until just surviving seems enough. We expected the next few years would be wonderful for our daughter. She was aiming for and expected to get close to perfect scores in her exams and then go on to University to be an engineer or architect. She also loved her gymnastics, music and horse riding. She had a full and satisfying life. Now on the bad days I just hope she manages to leave school with some qualifications and can achieve a life with some quality and independence.
Take care and keep us posted on how things are going for your son.
{{{hugs}}} Ferrhi - you and your son have been through alot. I know how hard it is to keep hopeful. I was in a state of total despondency yesterday. Some days are better than others. But there is always hope and who knows maybe six months from now things will be much better for our children.
I know what you mean about lowering your expectations until just surviving seems enough. We expected the next few years would be wonderful for our daughter. She was aiming for and expected to get close to perfect scores in her exams and then go on to University to be an engineer or architect. She also loved her gymnastics, music and horse riding. She had a full and satisfying life. Now on the bad days I just hope she manages to leave school with some qualifications and can achieve a life with some quality and independence.
Take care and keep us posted on how things are going for your son.
RE: RE: 14yo son w/ JME
Submitted by 2caret on Thu, 2005-03-10 - 13:38
{{{{{ferrhi}}}}} You and your son have been thru alot! I am hopeful that we find the right answers for our son. We were originally told that he was being put on meds for theraputic reasons... he had 1 seizure that we knew of and possibly 2 others (he bit his tongue while sleeping and it was bad! -the next day I witnessed his T-C) Now, we are questioning the meds - my dh and I talked this morning that if the EEG is normal and they cant give us a legitimate answer as to why we should keep him on the meds, then we may request to have him weaned and see what happens..... we will certainly discuss it with our son. His neuro says his personailty change (tired, mellow, etc) is not med- related but I truly think it is..... BUT if the EEG shows abnormalities then we will have to discuss changing the meds.
We are trying to reduce his stress - we arent as hard on him about school, and my dh has stopped saying "why are you so lazy?" or "whats your problem?" etc.... we are getting him to talk about things and showing him ways to help himself. I found out he has A's in all his other classes, so whatever is happening to him in during ONLY 2 classes and they happen to be his hardest..... If he knows that we are on his side and trying to help him change things, then he will want to change too - Before, I think he was worried about his grades and started to bottle it up inside instead of sharing it and asking for help. He has always been the kind of kid who has always been hard on himself - so knowing he was failing just made matters worse.
I am still hopeful that the reason he had the siezure was due to sleep-deprivation and hormones - BUT I am coming around to the idea that it can be more serious and I will do whatever it takes to help him!
{{{{{ferrhi}}}}} You and your son have been thru alot! I am hopeful that we find the right answers for our son. We were originally told that he was being put on meds for theraputic reasons... he had 1 seizure that we knew of and possibly 2 others (he bit his tongue while sleeping and it was bad! -the next day I witnessed his T-C) Now, we are questioning the meds - my dh and I talked this morning that if the EEG is normal and they cant give us a legitimate answer as to why we should keep him on the meds, then we may request to have him weaned and see what happens..... we will certainly discuss it with our son. His neuro says his personailty change (tired, mellow, etc) is not med- related but I truly think it is..... BUT if the EEG shows abnormalities then we will have to discuss changing the meds.
We are trying to reduce his stress - we arent as hard on him about school, and my dh has stopped saying "why are you so lazy?" or "whats your problem?" etc.... we are getting him to talk about things and showing him ways to help himself. I found out he has A's in all his other classes, so whatever is happening to him in during ONLY 2 classes and they happen to be his hardest..... If he knows that we are on his side and trying to help him change things, then he will want to change too - Before, I think he was worried about his grades and started to bottle it up inside instead of sharing it and asking for help. He has always been the kind of kid who has always been hard on himself - so knowing he was failing just made matters worse.
I am still hopeful that the reason he had the siezure was due to sleep-deprivation and hormones - BUT I am coming around to the idea that it can be more serious and I will do whatever it takes to help him!
RE: 14yo son w/ JME
Submitted by fehrri on Wed, 2005-03-09 - 11:54
The pain of your story and the desperation I heard is so similar to ours that I cried. Last Spring our son (now 16) had 3 brain surgeries - for Hydrocephalus and shunt revision - after being normal (honors, athlete, musician, etc.) for 15 years. The first surgeon put him on Dilantin as a preventative during the first surgery (we now know this isn't normal procedure). There were other problems but btween the 2nd and 3rd surgeries he took him off the Dilantin cold turkey because he was having allergic symptonms. We ended up in the ER multiple times and with a grand mal seizure and another operation. Between June and November we tried 3 differnt meds. He turned into a zombie and by the time he had a total ugly seizure at the home coming dance in October we decide that the medication was a big part of the problem. The neuro agreed and we slowly weaned him off the meds completely and he began to return to his former self as the dosage lowered. Then in December he had 2 more total seizures - but refused to go back on the meds (remember - he's 16!) From last spring until now we have seen him go from a self confident honors athlete to a depressed, fearful, resigned child - many times much younger emotionally than 16.
He is now on 150mg of Trileptol (started last Saturday) to try and help the depression (which was scary - under the covers crying and refusing to come out) and his mood has lifted some. He is incapable of taking any kind of a test at school and passing it. He lives in fear of having another seizure in school (3 so far). The neuro doesn't want to try any other meds. The 2nd surgeon told us it could have all been caused by him going off the Dilantin cold. We have fallen apart and put ourselves back together so many times it has become a way of life. He started counseling Monday night - after months of refusal - because he "was fine" and "all of this was going to go away". He has also agreed do be tested by the school - he has a 504 plan but we think he needs more help now - like a neuro psych maybe and our insurance doesn't cover that. He used to want to be "normal" - now he just wants to "survive the day".
What have we done to help? We try to lower the stress level and not pressure him. He used to be very hard on himself - now a lot of time he seems to have given up any extra effort. He was so tired on the drugs that he'd come home from school and sleep till dinner (3-4 hours some times) and it would take me 3/4 of an hour to get him awake. He was dizzy all of the time, said he felt like he was on a roller coaster, with the flooring giving way. He has major memory issues. And some of these are already coming back just since Sat. I wish I had some magic solution for you. I am so leery of the medication I get sick thinking about it - the depression is scary and the seizures beyond belief. The biggest thing we have tried to do is remove the stresses and the expectations. We keep telling him that these other things are not as important as his health. This is very very hard to do - when you have a child who has always done everything well. Over time he has begun to accept that where he is now sucks. He has given up his chance at a license any time soon so his independence is gone. He has major emotional meltdowns every few weeks and then is better for awhile.
I don't know if there is an answer - another doctor - which we are working on; reducing stress; learning all you can so you can advocate for him - especially in school. Don't let them walk all over you. Demand better - and I mean demand. He needs to be supported in school. We have been lucky that way - but he is still failing - at least he is being supported and understood.
It is a nightmare - that goes on and on. We are beginning to think it may be a lifetime.
The pain of your story and the desperation I heard is so similar to ours that I cried. Last Spring our son (now 16) had 3 brain surgeries - for Hydrocephalus and shunt revision - after being normal (honors, athlete, musician, etc.) for 15 years. The first surgeon put him on Dilantin as a preventative during the first surgery (we now know this isn't normal procedure). There were other problems but btween the 2nd and 3rd surgeries he took him off the Dilantin cold turkey because he was having allergic symptonms. We ended up in the ER multiple times and with a grand mal seizure and another operation. Between June and November we tried 3 differnt meds. He turned into a zombie and by the time he had a total ugly seizure at the home coming dance in October we decide that the medication was a big part of the problem. The neuro agreed and we slowly weaned him off the meds completely and he began to return to his former self as the dosage lowered. Then in December he had 2 more total seizures - but refused to go back on the meds (remember - he's 16!) From last spring until now we have seen him go from a self confident honors athlete to a depressed, fearful, resigned child - many times much younger emotionally than 16.
He is now on 150mg of Trileptol (started last Saturday) to try and help the depression (which was scary - under the covers crying and refusing to come out) and his mood has lifted some. He is incapable of taking any kind of a test at school and passing it. He lives in fear of having another seizure in school (3 so far). The neuro doesn't want to try any other meds. The 2nd surgeon told us it could have all been caused by him going off the Dilantin cold. We have fallen apart and put ourselves back together so many times it has become a way of life. He started counseling Monday night - after months of refusal - because he "was fine" and "all of this was going to go away". He has also agreed do be tested by the school - he has a 504 plan but we think he needs more help now - like a neuro psych maybe and our insurance doesn't cover that. He used to want to be "normal" - now he just wants to "survive the day".
What have we done to help? We try to lower the stress level and not pressure him. He used to be very hard on himself - now a lot of time he seems to have given up any extra effort. He was so tired on the drugs that he'd come home from school and sleep till dinner (3-4 hours some times) and it would take me 3/4 of an hour to get him awake. He was dizzy all of the time, said he felt like he was on a roller coaster, with the flooring giving way. He has major memory issues. And some of these are already coming back just since Sat. I wish I had some magic solution for you. I am so leery of the medication I get sick thinking about it - the depression is scary and the seizures beyond belief. The biggest thing we have tried to do is remove the stresses and the expectations. We keep telling him that these other things are not as important as his health. This is very very hard to do - when you have a child who has always done everything well. Over time he has begun to accept that where he is now sucks. He has given up his chance at a license any time soon so his independence is gone. He has major emotional meltdowns every few weeks and then is better for awhile.
I don't know if there is an answer - another doctor - which we are working on; reducing stress; learning all you can so you can advocate for him - especially in school. Don't let them walk all over you. Demand better - and I mean demand. He needs to be supported in school. We have been lucky that way - but he is still failing - at least he is being supported and understood.
It is a nightmare - that goes on and on. We are beginning to think it may be a lifetime.