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seizure alarms
Sun, 01/16/2005 - 17:53Topic: Family & Friends
Hello, I'm new to this site. My daughter is 19 months old and started having temporal lobe seizures a couple of weeks ago. Her seizures have lasted 45 min to an hour before we've been able to get them under control with medication. She is taking Trileptol and we are still playing with the dosage trying to find the right balance. I am very concerned that she could have a seizure at night and we wouldn't know about it. Does anyone know of a monitoring device that actually works?
Comments
RE: seizure alarms
Submitted by seeker2 on Tue, 2004-04-20 - 09:37
Hi There..There is a company that sells alarms.Various alarms are available that are triggered by convulsive movement. People who live alone may consider alarms that automatically contact a designated person in the event of a seizure-very useful if she wants to be independant.... Using safety foam pillows may reduce the risk of impaired breathing during a nocturnal seizure. People who witness a seizure can help by staying with the individual throughout and for some time afterwards to ensure they have made a full recovery is always good advice,and helpful to tell the neuro about -or write down . Companies supplying alarm systems http://www.epilepsynse.org.uk/pages/info/leaflets/mortality.cfmI have a friend whose daughter is about the same age as yours-but has JME,and she has a saying that no child should suffer-her best buddy sent me the link that was obtained from another friend who lost her partner to SUDEP.I've put up the link so you can see what you yourself think about the advice it gives.Safety issues are paramount and can be worrying for any parent who wants the best there is for their child.-no matter the age...Hope that your daughter's, "Triggers',are not as unpleasant as some that you read about who have TLE,and are undergoing a treament titration therapy-that is scary...
RE: seizure alarms
Submitted by seeker2 on Tue, 2004-04-20 - 09:36
Hi There..There is a company that sells alarms.Various alarms are available that are triggered by convulsive movement. People who live alone may consider alarms that automatically contact a designated person in the event of a seizure-very useful if she wants to be independant.... Using safety foam pillows may reduce the risk of impaired breathing during a nocturnal seizure. People who witness a seizure can help by staying with the individual throughout and for some time afterwards to ensure they have made a full recovery is always good advice,and helpful to tell the neuro about -or write down . Companies supplying alarm systems http://www.epilepsynse.org.uk/pages/info/leaflets/mortality.cfmI have a friend whose daughter is about the same age as yours-but has JME,and she has a saying that no child should suffer-her best buddy sent me the link that was obtained from another friend who lost her partner to SUDEP.I've put up the link so you can see what you yourself think about the advice it gives.Safety issues are paramount and can be worrying for any parent who wants the best there is for their child.-no matter the age...Hope that your daughter's, "Triggers',are not as unpleasant as some that you read about who have TLE,and are undergoing a treament titration therapy-that is scary...
RE: seizure alarms
Submitted by tibet2 on Mon, 2004-04-19 - 21:25
hi, i'm so sorry to hear about your daughter's seizures. they sound frightening. you are right to be concerned about nocturnal seizures, as people often have seizures while they are sleeping. unfortunately i don't know of any seizure alarm. i don't know how one could be made. many parents use a baby moniter and that would work fine so long as your daughter made noise during a seizure and you are a light enough sleeper. you could also use a video moniter if you can afford the equipment. but i'm afraid all of that depends on a parent(s) who sleep fairly lightly and a child making noise. the simplest option would be bringing her crib into your room. what do temporal lobe seizures (TLE) look like in your daughter? she's so little. what did you notice? her seizures are extremely long. were you giving an emergency medicine like diastat, or something, when she had a seizure? how is she doing on trileptal? hopefully it will work well for me. i use trileptal for my TLE and it works well for me. i hope your daughter has the same success that i have with it!