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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: RE: RE: RE: 14yo son w/ JME
Submitted by 2caret on Sun, 2005-03-13 - 10:39
wow! First, I am impressed with your knowledge of drugs and timelines - but more importantly, I am amazed at your sons story. I only hope that you find the right answers and your son's seizures become nearly null and void. Something I find interesting... you mentioned aspartame - befoer my sons seizures he was drinking ALOT of crystal light juices- I had decided to try them to help me lose weight, but my kids drank more of it than I did..... I cant help but wonder if that triggered something. I havent bought it since - becuz my mom mentioned something about it containing aspertame and kids shouldnt drink it!
Something else I'm curious about - how do we know if our kids are having any type of seizure at night if we are all sleeping and cant see it happening?? I cant sleep with him, and monitor him all night - I know the EEG will help with this but can they really tell us everything with only 15-30 min of EEG? My sons original EEG and MRI were "normal" - he was put on dilantin when he entered the hospital and those tests were done after 36 hours of being put on it. They told us the meds would not interfere with the results, but I'm not completely sure of that either...... Its sooooo frustrating! You want to beleive the doctors but when we live with it everyday and see whats happening, I dont know if I can believe them - AND, our docs are at the best childrens hospital in the country! You would think that counts for something....... UUUUGGGGHH!!!!!!!! It just makes me want to try even harder than normal to help my son get back to his old self.... and more importantly, allow him to do anything he wants to do! :)
wow! First, I am impressed with your knowledge of drugs and timelines - but more importantly, I am amazed at your sons story. I only hope that you find the right answers and your son's seizures become nearly null and void. Something I find interesting... you mentioned aspartame - befoer my sons seizures he was drinking ALOT of crystal light juices- I had decided to try them to help me lose weight, but my kids drank more of it than I did..... I cant help but wonder if that triggered something. I havent bought it since - becuz my mom mentioned something about it containing aspertame and kids shouldnt drink it!
Something else I'm curious about - how do we know if our kids are having any type of seizure at night if we are all sleeping and cant see it happening?? I cant sleep with him, and monitor him all night - I know the EEG will help with this but can they really tell us everything with only 15-30 min of EEG? My sons original EEG and MRI were "normal" - he was put on dilantin when he entered the hospital and those tests were done after 36 hours of being put on it. They told us the meds would not interfere with the results, but I'm not completely sure of that either...... Its sooooo frustrating! You want to beleive the doctors but when we live with it everyday and see whats happening, I dont know if I can believe them - AND, our docs are at the best childrens hospital in the country! You would think that counts for something....... UUUUGGGGHH!!!!!!!! It just makes me want to try even harder than normal to help my son get back to his old self.... and more importantly, allow him to do anything he wants to do! :)
RE: RE: RE: RE: 14yo son w/ JME
Submitted by Willsmom on Sat, 2005-03-12 - 10:37
My Son Just turned 18. He was first diagnosed with JME at 13 but was likely having jerks for at least a year before diagnosis. After 2 T.C. seizures 3 months apart we decided to use an AED for control. He began Lamictal and stayed with that for ~ 18 months. His marks in school did go down a little , he had no T.C. seizures but the Myoclonics were never controlled . We kept increasing his dosage and the Myoclonics seemed to get worse. So we ried Valproate ( whille still using the Lamicatal) the 2 drugs did not work well in his body together and he began to see double, and began to have major memory and thinking, problems. We dropped the valproate and then slowy switched over to Topomax. We eventually had 3 months of conplete seizure freedom on Topomax only. He began to have break through seizures so the dosage of Topomax was increased but the seizure activity increased. We added Keppra, more T.C. seizures, Got rid of Topomax, even more T.C. seizures , increased Keppra, Even more T.C. seizures , by this time he had no Myoclonic seizures, onlyT.C.'s up to 2 a day... We added Mysoline and decreased the Keppra then switched to Phenobarbital while decreasing Keppra, finally we added zonegran and have had reasonably good results with zonegran and Phenobarb. The seizure activity has been reduced, we are monkeying around with dosages. The most important change that My son made in the last few months was to begin CPAP (positive airway treatment) for sleep APNEA. He has had an enormous change in his tiredness level. I have learned from him that there is a difference between being tired and being sleepy. He is often tired bu not often able to go to sleep. I have been told that the AED's do not effect sleep patterns, but I believe that they must. We notice increased seizure activity (both myoclonic and T.C.'s) when his sleeping pattern is mucked with i.e. 1 or 2 late nights means a seizure.We have experimented with diet with no measurable results, just possible culprits. But in this game of looking for triggers, it seems everything is guilty until proven innocent....We do avoid MSG and Apartame like they are poison, I think that too much sugar ( simple sugars) cause dsome grief.I am completely sympathetic with you at this time. The feeling of complete loss of control and inablity to take positive action is difficult. It is so hard to continue to give your kid a drug that you know is causing them to be someone other than themselves and could actually be doing more harm than good, with no idea of wether you are doing the right thing or not!I can only take some solace in the fact that many do get beyond this point of loss of control, take their lives back and get on with it. Getting there is not an easy climb.Best Regards