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Worried mom of teenage daughter
Fri, 02/17/2006 - 20:34Topic: Parents & Caregivers
My beautiful fourteen year old daughter was diagnosed at ten years old with seizure disorder syndrome after two back to back tonic seizures. She had fever related seizures until she was three years old and then the tonic seizures starting at age 10. She was put on anti-seizure medicines of different varieties and has now been of the meds for two years. She has severe migraines. The neuro thinks her problems are linked to fluid on the brain stem (cysterna magna) that is inoperable. This week she experienced her first seizure in fours years. I was devastated because I thought she had outgrown the problems. She begged me not to call the doctor because she would not be able to drive and would have to go back on the meds. The seizure she had this week was preceded by severe stomach pain, nausea, and dizziness. Afterwards, she had a headache, bad taste in her mouth, and slept for hours. As for her, she handles the seizures well, but I don't. I have a tremendous feeling of guilt and helplessness. I think about her loosing her independence and being embarrassed about her condition. I wonder if there was something I could have done to prevent this from happening to her. I am afraid for her to spend the night with friends or family for fear they won't know how to take care of her. My daughter is a very popular, talented, and humble young woman. I don't want her to miss any opportunities in life because of this condition. She has a totally different outlook. She and I are an up and coming country music duo. Instead of being obsessed with fame, she said God sent this condition upon her so that when she becomes famous, she can change the world for people with seizures. People are naturally drawn to my daughter, not because of her talents, but because she genuinely cares about other people. While I wander why God sent this on my beautiful child, she wanders how she can be the voice of so many other people just like her. Maybe someday I can be half the person she is.
Comments
Re: "She begged me not to call
Submitted by mikamel on Sat, 2006-02-18 - 13:17
I was quite disheartened by your posting because this website is about helping people not being judgemental. No where in my post did I say I DID NOT take her to the doctor. As a matter of a fact, her doctor WAS consulted and decided not to place her back on the meds at this time due to just one seizure. The meds have an adverse effect on her moods, her involvement in sports, and her grades (which are very important to her.) Her migraines are not linked to seizures but are just another medical condition she has. For you to think that she is not embarrassed by her friends seeing her have a seizure, you must not know much about teenagers. As a high school teacher, I know first hand how much appearances mean to this age group. I agree that it shouldn't matter, but tell that to any teenager and try to convince them otherwise. I don't know why you drew such negative conclusions such as I feel a seizure is failure or I want her to drive and kill other people or herself from a seizure. To the contrary, I feel my daughter has achieved more because of her condition and her desire to help others. Even though she cried about the driving, she is not the type of child to want to place anyone at risk by her seizures, nor is anyone in our family. Since we have been dealing with her condition from birth, I do feel my family is well educated on the topic, but that doesn't stop any of us from worrying about her or her feeling like she is different from other kids her age. My posting was written for others in similar situations to share their feelings and experiences, not pass along judgement on a family or child that you don't know. We were referred to this website by our physician so please be aware of the affect your comments can have on other people (especially young people like my daughter who read these postings).
Re: Re: "She begged me not to call
Submitted by tdelaney on Sat, 2006-02-18 - 20:26
Hello Melinda, I hope all is well. I have had epilepsy since I was around 10 yrs. old. I understand yor daughters situation about having her seizures or fainting spells at school. It is difficult. I was in the band at High school and a lot knew I had E. so when it occurred they knew what was happening and understood. My friends were very supportive. I know your daughters friends are the same. Epilepsy is a part of her so must be able to talk about it openly and do not be ashamed to do so because it is a part of her.
I am 39yrs old now.
Like yourself our family is well educated about the epilepsy and how to live with it and with a lot of love patients and support you give your daughter I know things will be all right. My mom is a physical therapist which did help. But you can beleive I hated it when I was little, it was like living with the doctor. HAHA
Melinda, I have been seizure free for 11yrs and I do drive I am blessed. I will keep your family in my prayers.
Tom
"She begged me not to call
Submitted by solis on Sat, 2006-02-18 - 01:27
"She begged me not to call the doctor because she would not be able to drive and would have to go back on the meds." "I don't want her to miss any opportunities in life because of this condition." And what did you do? Say nothing about her seizure so she can still drive? How would you feel if she seized behind the wheel and had a huge accident? Please, especially for your own sake, if you love her, do the right thing and take her to an epileptologist. As one who's had epilepsy since I was three, I 'finally' got to drive when I was forty (= I was then perfectly controlled) After 10 years, while driving I discovered my drugs had stopped controlling me as I had a seizure behind the wheel..destroying the car. You want to keep her minus medicine and also have her be a possible seizure risk to everyone on the road? That isn't fair..in fact it is selfish!! "I think about her loosing her independence and being embarrassed about her condition" Gads! It's a medical condition (like diabetes) why should she be embarassed? The reason is because others don't understand the condition and some still see epileptics as possessed by the devil. But, the 'others' most of us care about are family and close friends. If you love her, you will inform yourself about epilepsy and accept her. http://www.epilepsy.com is an excellent place to learn (Ignorance is not bliss!) As for losing independence, she can just live closer to her destination or a bus rather than drive if she has seized in a year. The only thing I missed was driving, but there is nothing I wanted to do that I couldn't do. I graduated from university and formed my own art company. So your idea that a seizure means failure is garbage. Did you know that 'most' people are unaware when they have a seizure? (As the mind goes to sleep during a seizure, it's usually before and afterward appearances/feelings that make them realize 'it' happened) ~sol