Sunday, March 22, 2009

[epilepsy] My daughter

My daughter is 20 years old and away at college, she is a sophomore and she does not have a roommate. She has tonic/clonic seizures (about one every six months). They are always sleep related and many of them have happenend in the shower in the morning (so she is supposed to shower in the evening when she is not tired. She has been on Lamictal for a few years (switched from Zongran which made her depressed) She did not have a seizure in 2008, so we were hopeful. 
In January 2009 she was home on winter break, excited about visiting her boyfriend, she woke up early and jumped in the shower, horrible seizure in the tub! Last week she called me from college she had a seizure (stayed up all night to write a paper). I told her to call campus security, she did, but signed off on visiting the hospital. I told her to go to the hospital, she was disoriented and didn't know exactly what happened. A chair was tipped over, there was blood on the floor and blood on a copy of her paper. I met her at the hospital, when she was released I took her back to the dorm where she vomited uncontrollably and had another seizure right before my eyes.. I dialed 911 and screamed down the hallway of the dorm and knocked on doors until someone called security - back to the hospital - they did a CT scan - called it a concussion and she slept in the ED for the next 4 hours while I watched her, I was too freaked out to do anything else!  What
if I hadn't been there? What if she didn't go to the emergency room the first time? Or the second time? What if she had hit her head harder and died on her dorm room floor of a head injury? (my sister has a head injury from a skiing accident)
I was lucky to take my daughter home for spring break, but tonight I drove her back to school and I have a nightmare in my head of what she looked like during the seizure and black eye/bruises, cut tongue after the seizure. I live with the nightmare of what could happen and for her the event is behind her, she does not see what I see. She is good about taking her meds. but not good about her sleep pattern and notifying the RA/professors about Epilepsy. Please give me some insight, I have become the pain in the neck mom, but I do not trust her to take care of herself, I need her to be an advocate for herself, she won't even wear her medical bracelet.
I am so stressed and it is all out of my control.
Also any input about the monitor that can be placed under the mattress? I am thinking of buying one. I would buy her a soft helmut, but I know she would not wear it. Any other thoughts?
 

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