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Amy's Story
   
 
My daughter, Madison, began having seizures some time in December 2009, a couple of weeks before her 6th birthday. She has atypical absence epilepsy, so I was not sure what was happening with her, at first. She would bob her head and blank out. She would be completely unresponsive; then she would snap out of it and not even know that anything happened. It started happening several times a day. I began to research online what could be going on, and I read about seizures that many people are not aware of. I called her pediatrician and in January 2010 she had her first EEG. She was diagnosed with absence epilepsy and immediately put on medication. The medication seemed to help, but soon had side effects. Her medication was switched. In all, Madison has been on 6 AED’s total and one medication for side effects of one of them. Currently Madison has just quit taking one of her AED’s so she went from being on 3 to only taking 2 and she had a period where she didn’t have a seizure 2 and a half months. Last week, however; she had a day where she had several episodes. These were different from her typical seizures, though. She only starred off into space; she had a cluster of 6 or 7 then went into a single episode that lasted over 2 minutes. We are now increasing medication and back to our original restrictions (no riding a bike, no swimming, no climbing, and keeping a close eye on her at all times).
Madison was having 10 to 30 seizures, and that was only what we witnessed, every day. She also began having convulsions in her shoulders when she would have a seizure. I talked to her doctor because I was concerned that she had started having partial complex seizures. She had a 2nd EEG done which still confirmed that she was having absence seizures, but her mannerisms and the length of seizures were not typical for absence epilepsy, so they changed the diagnosis to generalized atypical absence epilepsy. We tried many different medication cobinations that never worked and the side effects were awful.
We moved to California from Utah in July 2010 and began seeing an epileptologist. We had another medication change; then Madison began to sleep most of the day, at home and at school. One day she slept for 20 hours. We went in for her regular blood work, and found out that her blood levels were way off and her medication was poisoning her (her epileptologist says that Madison’s body is “sensitive to medication”). This brought us to another drastic medication change.
Today she is doing well, as far as her seizures are concerned, but there are now, sometimes serious, behavior issues. Her epileptologist seems to think that Madison will probably always have some type of seizures because she has been so resistant to medications. It worries me to think that for the rest of her life she could suffer from seizures and they could get in the way of her living a normal life.
As far as school goes, we have had our ups and downs. In kindergarten, Madison tested in the top 5 of her class, then in first grade, her teacher wanted me to home school her and then talked about holding her back. This year she is making more improvements. Madison cannot remember things she has learned nor can she focus and stay on task. I have tried to get her on an IEP so that she does not get further behind in school. I have been unsuccessful in getting an IEP in place. I just do not want to see my little girl slip through the cracks if she falls significantly behind again.
Madison has had 3 EEGs, 1 MRI, 1 spinal tap, and countless blood tests done, she has been on 6 different AEDs and one drug for her liver. This has affected the way my daughter, my other children, and I live our lives. It was very frustrating to watch my daughter have seizure after seizure after seizure day after day and know that there was nothing I could do to help her. I have watched my baby suffer terrible side effects from medications and have severe allergic reactions to them. She missed out on so much from sleeping the days away because the seizures would wipe her little body out. I do not want another family to experience this.

I want there to be more programs for our kids, I want my daughter to have an opportunity for good education. I do not want to see other little boys and girls go through the game of trying medication after medication while they have reactions that could be dangerous. Currently I am a student working on my psychology degree. I recently recieved my Associates in Psychology and will go further with my bachelors and then on from there, I think that Madison's epilepsy has changed what I want to do with my life and my future. I would love to volunteer and help out with education and awareness.
 
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Amy Miller - Fairfield, CA