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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 2caret on Tue, 2005-03-08 - 20:07
Jennifer65 - thanks for the advice! I am waiting to see what the EEG shows before we change the meds. EVerything I have read shows Depakote as the #1 med for JME - but if its gonna make my son miserable and fail in school it has to go! He is also refusing to go to see the psych - insists he "is fine" - but hes 14 and doesnt really grasp the concept of depression. His neuro said she will call him tomorrow and talk to him - hopefully convince him that its the right thing to try therapy once. BUt she also said that its a 2 way street adn it wont work if hes not willing so we cant force him.
I hope your daughter doesnt give up on her dreams...... anything is possible if you put your mind to it! She sounds like a very put-together smart girl! Good luck!! :)
Jennifer65 - thanks for the advice! I am waiting to see what the EEG shows before we change the meds. EVerything I have read shows Depakote as the #1 med for JME - but if its gonna make my son miserable and fail in school it has to go! He is also refusing to go to see the psych - insists he "is fine" - but hes 14 and doesnt really grasp the concept of depression. His neuro said she will call him tomorrow and talk to him - hopefully convince him that its the right thing to try therapy once. BUt she also said that its a 2 way street adn it wont work if hes not willing so we cant force him.
I hope your daughter doesnt give up on her dreams...... anything is possible if you put your mind to it! She sounds like a very put-together smart girl! Good luck!! :)
RE: 14yo son w/ JME
Submitted by batman on Wed, 2005-03-09 - 03:16
Welcome to the group 2caret. I collected some info online, via this website, which lists two of the side effects you mentioned that your sonÂ’s having as being common [i.e. tiredness & depression]. But the one side effect of sluggishness is listed under the serious side effects, with the recommendation to tell the doctor right away if you notice any of these problems, but don't stop using the Depakote unless the doctor says so. In another area, which continues with info about Depakote ER, says that most patients take a total of 750 to 3,000 mg each day.
I cannot answer your question about teens having these experiences, because I donÂ’t even have any kids to begin with. Sorry. But I do hope someone else can.
Jennifer65, A while back, I found one great website, which lists every single antiepileptic drug available worldwide. http://www.epilepsy.org/Visitors/Centre/AEDs/index.cfm. Everything can be searched by choosing just the brand name, just the generic name, or even just the country. Anyway, I found the brand name of Epilim, which has the generic name of Valproate, and is found in 7 different countries. These being in Australia, Hong Kong, Ireland, New Zealand, Singapore, South Africa, United Kingdom.
Would you mind telling us where youÂ’re living at in this world? Because IÂ’m just wondering how far the epilepsy.com is being a useful source of information to people with epilepsy.
Bruce J
Welcome to the group 2caret. I collected some info online, via this website, which lists two of the side effects you mentioned that your sonÂ’s having as being common [i.e. tiredness & depression]. But the one side effect of sluggishness is listed under the serious side effects, with the recommendation to tell the doctor right away if you notice any of these problems, but don't stop using the Depakote unless the doctor says so. In another area, which continues with info about Depakote ER, says that most patients take a total of 750 to 3,000 mg each day.
I cannot answer your question about teens having these experiences, because I donÂ’t even have any kids to begin with. Sorry. But I do hope someone else can.
Jennifer65, A while back, I found one great website, which lists every single antiepileptic drug available worldwide. http://www.epilepsy.org/Visitors/Centre/AEDs/index.cfm. Everything can be searched by choosing just the brand name, just the generic name, or even just the country. Anyway, I found the brand name of Epilim, which has the generic name of Valproate, and is found in 7 different countries. These being in Australia, Hong Kong, Ireland, New Zealand, Singapore, South Africa, United Kingdom.
Would you mind telling us where youÂ’re living at in this world? Because IÂ’m just wondering how far the epilepsy.com is being a useful source of information to people with epilepsy.
Bruce J
RE: 14yo son w/ JME
Submitted by Jennifer65 on Tue, 2005-03-08 - 16:15
We are in much the same boat here- my 15 year old daughter has just been diagnosed with epilepsy and is on Epilim (same drug as Depakote- called Epilim where I live). She is also very, very tired and now struggling at school.
My daughter was the top student of her year- now on the Epilim she can't learn anything. Normally she just sits in class and absorbs information- not anymore. She was trying to revise for a chemistry test yesterday and she said when she looked at her notes it was like she had never been in class as she has no recollection of even writing them. She will be lucky to pass anything at school.
It started to dawn on her last night that the future she had planned for herself may not be going to happen. She wonders if her life is over. I can't describe how much it hurts to watch her go downhill. I feel as though I have lost my daughter and I think she feels she has lost herself.
My advice to you would be to try and get a different drug for your son. Lamictal is meant to have a much better side effect profile with minimal cognitive effects. Sadly my daughter was allergic to it (and Tegretol) but had she been able to tolerate it I think things would be going better for her. I know my daughter's tiredness and cognitive problems are caused by the Epilim because we did stop it once and her brain and personality returned briefly to normal but then she went on to have many seizures and had to go straight back on it. I suspect Epilim might also have a depressant effect on mood so I wouldn't be surprised that your son feels low.
{{{Hugs}}}} and all the best
We are in much the same boat here- my 15 year old daughter has just been diagnosed with epilepsy and is on Epilim (same drug as Depakote- called Epilim where I live). She is also very, very tired and now struggling at school.
My daughter was the top student of her year- now on the Epilim she can't learn anything. Normally she just sits in class and absorbs information- not anymore. She was trying to revise for a chemistry test yesterday and she said when she looked at her notes it was like she had never been in class as she has no recollection of even writing them. She will be lucky to pass anything at school.
It started to dawn on her last night that the future she had planned for herself may not be going to happen. She wonders if her life is over. I can't describe how much it hurts to watch her go downhill. I feel as though I have lost my daughter and I think she feels she has lost herself.
My advice to you would be to try and get a different drug for your son. Lamictal is meant to have a much better side effect profile with minimal cognitive effects. Sadly my daughter was allergic to it (and Tegretol) but had she been able to tolerate it I think things would be going better for her. I know my daughter's tiredness and cognitive problems are caused by the Epilim because we did stop it once and her brain and personality returned briefly to normal but then she went on to have many seizures and had to go straight back on it. I suspect Epilim might also have a depressant effect on mood so I wouldn't be surprised that your son feels low.
{{{Hugs}}}} and all the best