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09-04-2006, 11:54 AM
Hi my name is Cheryl and I just joined today. I was a member of brain talk about 3-4 years ago. I mostly lurked on child neurology. I have 3 daughters, ages 14, 12 and 8. My 8 year old has severe cognitive and physical disabilities, including epilepsy. On July 25 my 12 year old had her first seizure, a grand mal. She was at a girl scout camp and I wasn't with her. She had subsequent testing, normal MRI, abnormal EEG. After the sleep deprived EEG, while we were still at the hospital, she was having petite mal seizures. This continued till we got home and she went to bed. She was diagnosed with epilepsy, having grand mal, absence and complex partial seizures. She was put on Lamictal and hasn't got the rash or anything. I am not sure if she is still having seizures, she wakes up with bruises and says certain body parts hurt. She is VERY tired. She is just today on 100 mg in the am and 100 mg in the pm. I guess my questions are: should she have a medical I.D. bracelet? I have been thinking about that especially because she had a grand mal with no warning. Also, is there a letter to school or some sort of plan we devise that explains her and what the plan would be if she would have a seizure? Thanks Cheryl
09-04-2006, 12:41 PM
I guess my questions are: should she have a medical I.D. bracelet? I have been thinking about that especially because she had a grand mal with no warning. Also, is there a letter to school or some sort of plan we devise that explains her and what the plan would be if she would have a seizure? Thanks Cheryl
Absolutely get a MedicAlert, and get a real one. The ones you see in the store are not genuine MedicAlerts. If you get one through MedicAlert, you will have their 24-hour service. This is not true with the store-brand jewelry.
I would write to the school, and you should give them info on the types of szs she has, anything you can tell them about how they look, and what to do for her. Make sure to include all your phone #s as well.
09-04-2006, 04:54 PM
I had a medical alert braclet when I was your daughters age and people didn't even notice it. Just like your daughter I have petit mal,cp ( had a few grand mal and staus sz. when I was on neurontin.)
I would be sure and get a letter in to the school from both you and your daughters neuro. to let them know what types of sz. she has along with the side effects if her meds. I work in public school and 4 students have sz. and the school nurse as well as the teachers didn't know what to do so I started a Epilepsy Workshop to help teach everyone what to do if someone has a sz.
When I was your daughters age it was a hard time for me because the hormones kept changing as I grew into a young lady and this caused me to have many more sz. I also found out that drinking anything with nutra sweet (aspartame) caused more electrical activity in the brain leading to more sz. for me. You might want to keep a calendar and write down the time your daughter has any sz. along with a description of the sz. this will help the Dr. and they may see a pattern as to what time of day/night or what days of the month your daughter has any sz.
I had a lot of tests done before I had brain surgery twice to help reduce my sz. but the tests didn't show a lot of the brain damage because it was so deep in my brain they only found damage on the RTL where they did surgery. I've also found taking vitamin B12 once a day a great help reducing my sz.
Sorry for carrying on so long. Here's wishing your daughter and you the best of luck. May God Bless You Both!
09-04-2006, 08:27 PM
I'm so sorry to hear your girls are having problems.
That's been many years ago, hasn't it Sue? MedicAlert has education programs to make medics aware of their products/services. Now there's even an E-key:
Your Key to Good Health
In a medical emergency, things happen fast. Health care providers need a simple way to get more information. The MedicAlert® E-HealthKEY is an intelligent self-contained USB-enabled tool that is designed to launch your critical medical information in emergencies and allows you to carry your complete personal health record at all times.
They have pretty bracelets now, too.
I think it's a good investment and really think it's something a young person should have (older people too LOL).
09-05-2006, 07:11 AM
Hey, Cheryl. :)
I wanted to add that if it was her first sz, she may have actually had an aura and didn't know it. After all, how would you recognize it if you have never experienced a sz? I would encourage her to recall any sensations she had prior to (however weird they may be! :o ), and remember for future ref, just in case she needs to leave a situation quickly for safety's sake.
09-05-2006, 07:30 AM
Wanted to say welcome tho the forum
I agree as far as a medic alert bracelet.
They are very good to deal with and again in an emergency situation the doctor or hospital can call the #800 number and get all the info needed and as things change you just call medic alert and they will update
I also suggest keeping a log of what is happening,time, what she is doing at the time and anything she can explain on how she felt.
Any other questions please just ask we have some great members here who will try to help
Hi Cheryl, I'm new too. Welcome! I've been around the epilepsy rooms for along time though, but under a different name.
My sz's started around age 12 also. My 1st one was a partial & it happened in the 6th grade classroom .. I stood up & told the teacher to say "Hello" to me. Later, at home, another day, I had GMs. I wonder if those szs are related to her hormones (changes), like they are for many females. Keep note on if she has szs more often when her period is near (when 'hormones are more active').
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