Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
MEDS? HOW LONG? UUGH!!
Wed, 04/06/2005 - 07:32HI... well, today was a hard day. My 14yo son's neuro called. He has been on Depakote ER for 10mo. (he had 3 T-C's in 1 week, all in his sleep, at 13yo, but the last one was witnessed and he lost consciousness, turned blue and was revived by the EMTs - he spent 4 days in the hospital with a team of docs totally baffled - this was his first ever and no family history) His doctors told us that he would be on meds for 1-2 years. Typically the treatment is 2 years seizure-free. SO, last week he had a sleep deprived EEG and it was normal. This is the 2nd one hes had. His MRI was also normal. We decided as a family we would discuss the possiblity of weaning him off if they were all normal after 1 year (becuz originally they told us we would discuss this after 1 yr.) When she called she told me she understands why we would want to do that, and she cant stop is from it, but her strong recommendation, along with another neuro and epileptologist, is he stay on it for another year. This would decrease his chances of having another. I'm agreeing with them but my dh and son dont agree. My dh has not been to all the appts, (only 1 actually) he has not read anything about seizures, or talked to the doc himself. When he asks me what she says, he argues about her answers. He feels if they cant give us definitive answers then theres no reason to keep him on meds..... My son, who has been scared from day one, does not want to be on meds anymore. He doesnt like the way they make him feel (tired, lazy, hard to concentrate in school) but he has been seizure free and that is very important and we have managed to find ways to help with the side effects!! I was the only one who saw the seizure and I NEVER want to see that again. The doctor also said that all his seizures happened while he was sleeping and "that is dangerous" I do not want to wake up every morning wondering if hes alive, dead or unconscious!
WHAT WOULD YOU DO??????????????? How do I make them understand?? My son is not old enough to make a decision like that and my dh does not want to listen to what the experts have to say. I dont know if anyone has answers, but I had to vent! AAARRGGGG!!!!!!!
Comments
RE: RE: MEDS? HOW LONG? UUGH!!
Submitted by mexican_fire on Tue, 2005-04-05 - 21:55
I have been on meds for 5-6 years now, and will always have to take them, no matter if I am seizure-free or not. I have a syndrome that makes it so I can't.
If you daughter wants to be so mouthy about everything, then you need to tell her to come with you or keep her mouth shut about things that aren't her business.
If she wants to be a part of the care team, then she needs to get with the program and start helping and not badgering.
Your son(?) needs to read more on this to have any kind fo understanding of it.
While he doesn't want to be on his meds, due to the side effects, they are accomplishing what they are meant for. Stopping seizures.
I take Depakote, as well, and I take 1250 mgs of it daily, no problems with it. I also take 3600 mgs of Neurontin, no problems with it, either.
I have many a problem with Grand Mals, but during my waking hours. In fact, I just had a real doozy early yesterday evening.
The Depakote does cause me to behave in a very slowed down manner. I am stuck to myself almost. I lost about 90% of my hair last June, and it grew back in even more curly than it originally was, it also creates a slight hand tremor. But it is worth it to have even some seizure control.
I also have Myoclonics, and Absences.
Just gather up your family members and have a family meeting and tell them all that the one with the epilepsy is being shunned and on his own for lack of a better word with this, people are ignoring him and they need to start the support system ASAP. NO ONE, and I repeat NO ONE with epilepsy should ever be left without suupport of some kind to help them deal with it. It is a huge blow to the soul and person's self-esteem and they can't be expected to deal with it alone. People have to stop fighting with each other until this gets settled.
As for the meds and other assorted tests....Clean EEGs mean nothing with epilepsy. 90% of the time EEGs are normal between seizures. Most MRIs and CTs are also normal unless there is some scarring in the brain, AVMs, tumors, malformed lobes, etc, it will look normal.
As for him having a TC in his sleep, you are right that can't be let to occur again, because he could wind up in the worst of situations called SUDEP or Sudden Death in EPilepsy.
Good luck!
Nancy, RN-Neuroscience/EMU
I have been on meds for 5-6 years now, and will always have to take them, no matter if I am seizure-free or not. I have a syndrome that makes it so I can't.
If you daughter wants to be so mouthy about everything, then you need to tell her to come with you or keep her mouth shut about things that aren't her business.
If she wants to be a part of the care team, then she needs to get with the program and start helping and not badgering.
Your son(?) needs to read more on this to have any kind fo understanding of it.
While he doesn't want to be on his meds, due to the side effects, they are accomplishing what they are meant for. Stopping seizures.
I take Depakote, as well, and I take 1250 mgs of it daily, no problems with it. I also take 3600 mgs of Neurontin, no problems with it, either.
I have many a problem with Grand Mals, but during my waking hours. In fact, I just had a real doozy early yesterday evening.
The Depakote does cause me to behave in a very slowed down manner. I am stuck to myself almost. I lost about 90% of my hair last June, and it grew back in even more curly than it originally was, it also creates a slight hand tremor. But it is worth it to have even some seizure control.
I also have Myoclonics, and Absences.
Just gather up your family members and have a family meeting and tell them all that the one with the epilepsy is being shunned and on his own for lack of a better word with this, people are ignoring him and they need to start the support system ASAP. NO ONE, and I repeat NO ONE with epilepsy should ever be left without suupport of some kind to help them deal with it. It is a huge blow to the soul and person's self-esteem and they can't be expected to deal with it alone. People have to stop fighting with each other until this gets settled.
As for the meds and other assorted tests....Clean EEGs mean nothing with epilepsy. 90% of the time EEGs are normal between seizures. Most MRIs and CTs are also normal unless there is some scarring in the brain, AVMs, tumors, malformed lobes, etc, it will look normal.
As for him having a TC in his sleep, you are right that can't be let to occur again, because he could wind up in the worst of situations called SUDEP or Sudden Death in EPilepsy.
Good luck!
Nancy, RN-Neuroscience/EMU
RE: MEDS? HOW LONG? UUGH!!
Submitted by Robin on Tue, 2005-04-05 - 08:29
When my daugher starting having sz. at 15, it turned her and our world around also. She also was on depakote. At first, she felt sluggish and sleepy a lot of time so we asked the doctor for lower dosage. He agreed. She was not having any sz. while on the higher dose but also did not have any on the lower dose. He sugested she stay on her meds for two years before we wean her off. He felt that that age, it was such a grey area on whether whe would continue to have them or they would go away. (Adolescents, puberty, hormones. He was a specialist in childrens nero. so I felt he knew what he was talking about.) It was a pain, we watched diet, made sure she got her 8 hours of rest each night, but nothing for 2 years. So we started weaning her off the meds and then got completly off and 2 months later she had a sz. So she had to go back on her meds again. Tell you son that life doesn't stop just because he has to take some meds. She continued to play softball and basketball for her high school teams and we tried not to ever let her "E" interfer with anything she wanted to try. If she had another, we would handle it at that time. I truly believe it hurt her worse to go off the meds and have to start again. She has made a decision to her doctor's approval to stay on her meds and she has been sz. free for some 10 years. If at any time she wants to go off the meds...she will much better about it now.
When my daugher starting having sz. at 15, it turned her and our world around also. She also was on depakote. At first, she felt sluggish and sleepy a lot of time so we asked the doctor for lower dosage. He agreed. She was not having any sz. while on the higher dose but also did not have any on the lower dose. He sugested she stay on her meds for two years before we wean her off. He felt that that age, it was such a grey area on whether whe would continue to have them or they would go away. (Adolescents, puberty, hormones. He was a specialist in childrens nero. so I felt he knew what he was talking about.) It was a pain, we watched diet, made sure she got her 8 hours of rest each night, but nothing for 2 years. So we started weaning her off the meds and then got completly off and 2 months later she had a sz. So she had to go back on her meds again. Tell you son that life doesn't stop just because he has to take some meds. She continued to play softball and basketball for her high school teams and we tried not to ever let her "E" interfer with anything she wanted to try. If she had another, we would handle it at that time. I truly believe it hurt her worse to go off the meds and have to start again. She has made a decision to her doctor's approval to stay on her meds and she has been sz. free for some 10 years. If at any time she wants to go off the meds...she will much better about it now.
RE: MEDS? HOW LONG? UUGH!!
Submitted by angel_lts on Tue, 2005-04-05 - 07:40
Well depending if he will grow out of it or not, that would be your answer. But no one is truely going to know that till he is older and in the meantime the smart thing to do is stay on the meds and be safe. But I would think about changing to a different medication could help.Change his diet and give him vitamins. There is also the ketogenic which is a very stricked diet, but being 14 that could be hard to do.best of luckhttp://health.groups.yahoo.com/group/EpilepsyApproach/Lisa