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New diagnosis for 14 year old daughter
Thu, 01/06/2005 - 21:24I have just recently joined this group and it's a comfort to read about similar situations as my 14 year old daughter. She began having seizures last June and has almost had them monthly since then. The doctor prescribed Tegretol and she has been taking 600 mg per day. I was witness to her seizure at the beginning of December and what she was like prior. A few weeks ago she began acting the same way....she struggled for words, she was cranky, she didn't want to wake up in the morning, no amount of sleep was enough and she would go into fixed stares for minutes as a time. I asked the doctor to check her Tegretol levels because I thought she was "crashing". The doctor informed me it was at "27" and well within "theraputic" levels. Two days ago she had a seizure at school. Prior to this she was disoriented and went to a completely wrong class where she explained to the teacher she didn't know where she was or where she was supposed to be. Half an hour later she had her seizure. My daughter has had 4 EEG's and each was normal but her "sleep deprived" EEG showed spikes so when she's tired she's prone to seizures. My problem is my daughter is ALWAYS tired. We already put her to bed at 9:00 and she reads for 1/2 an hour and then lights out. She wakes up at 6:30 am. In the morning her bed looks like a battle zone and she's sideways or the blankets are twisted which shows me she's not getting quality sleep. Is there anything I can do to ensure her better sleep? Can the Tegretol actually be inhibiting her sleep patterns? Is there a better anti-seizure medication that will allow her to sleep better without effecting her school day. Putting a 14 year old to bed at the same time as her 2 year old brother is hard on her and she resents it. Has anyone else had a similar experience? I'd love to hear back. Thanks....Marg
Comments
RE: New diagnosis for 14 year old daughter
Submitted by gsness on Thu, 2005-01-06 - 11:12
RE: New diagnosis for 14 year old daughter
Submitted by batman on Thu, 2005-01-06 - 15:23
Marg, your daughter's situation you mentioned that "...she struggled for words, she was cranky, she didn't want to wake up in the morning, no amount of sleep was enough..." may very well be because of the Tegretol side effects [nausea, sleepiness, fatigue, dizziness, double vision, reduced coordination, headache, diarrhea, reduced memory, weight gain and toxic levels may cause an increase in seizures], her body may still be trying to adjust to the medication, and/or possible because of your kid being a female. No joke. Take a glance over another group of information at this address...
www.epilepsy.com/info/women.html
You also said that "...she has been taking 600 mg per day." Is this amount divided up into, say, around 300mg twice a day? Then also "The doctor informed me it was at "27" and well within "theraputic" levels." may not necessarily be within YOUR daughter's theraputic levels. It could be over OR under HER OWN actual theraputic level. Just a few months back I remember reading something saying that less than 50% of EEGs are truely acurate. Even people who do not have seizures might have abnormal EEG results.
Keep records of what happens and bring it all to the doctor's attention, along with talking to the school teachers, staff, anyone & everyone else [friends & relatives] so they can become helpfull at knowing what to do with first aid and explaining what they may visually witness if and/or when she has more possible links to having seizures.
Being able to control seizure varies in time with everyone. Try working together and learning more about seizures & epilepsy in order to help the necessary understanding of indepth details.
Good luck and please keep others on here inform with the results.
Bruce J
Marg, your daughter's situation you mentioned that "...she struggled for words, she was cranky, she didn't want to wake up in the morning, no amount of sleep was enough..." may very well be because of the Tegretol side effects [nausea, sleepiness, fatigue, dizziness, double vision, reduced coordination, headache, diarrhea, reduced memory, weight gain and toxic levels may cause an increase in seizures], her body may still be trying to adjust to the medication, and/or possible because of your kid being a female. No joke. Take a glance over another group of information at this address...
www.epilepsy.com/info/women.html
You also said that "...she has been taking 600 mg per day." Is this amount divided up into, say, around 300mg twice a day? Then also "The doctor informed me it was at "27" and well within "theraputic" levels." may not necessarily be within YOUR daughter's theraputic levels. It could be over OR under HER OWN actual theraputic level. Just a few months back I remember reading something saying that less than 50% of EEGs are truely acurate. Even people who do not have seizures might have abnormal EEG results.
Keep records of what happens and bring it all to the doctor's attention, along with talking to the school teachers, staff, anyone & everyone else [friends & relatives] so they can become helpfull at knowing what to do with first aid and explaining what they may visually witness if and/or when she has more possible links to having seizures.
Being able to control seizure varies in time with everyone. Try working together and learning more about seizures & epilepsy in order to help the necessary understanding of indepth details.
Good luck and please keep others on here inform with the results.
Bruce J
RE: New diagnosis for 14 year old daughter
Submitted by Willsmom on Thu, 2005-01-06 - 09:10
This all sounds very familiar to me. My son has JME and I have witnessed the same behaviour before a seizure ( including myoclonic seizures). I have also witnessed a marked improvement in his ability to get to the task at hand after the (myoclonic) seizure. He is disabled for days after a TC seizure.He is always tired.He can never get enough sleep. for a while 12 hours was not enoughh)He is being treated for Sleep apnea, using CPAP. This has definately reduced his daytime sleepiness.I feel like the drugs that he has been taking contribute to the sleepiness ( especially in the morning)I wish I could tell you what to do to fix things... It seems that all that can be done is to tinker with the AED's and modify lifestyle until you get the right mix. By the way, 8 1/2 hours of sleep is a proper ampunt for a teenager , actually 9 to 9 1/2 hours is what is reccommended. It may be that your daughter is going to be earlier that she used to, but it is good for her regardless of wether she has E or not.