Childhood Epilepsy

My oldest daughter was diagnosed with PDD-NOS when she was 3 yrs old. You can find our back story here. We thought that after dealing with her PDD and finding a good routine and coping mechanisms that we were in the clear. She had an IEP (individual education plan) in place and was working hard at learning and keeping up with her peers. She was developing friendships and most people when they first met her couldn't tell there was anything "wrong" with her.  We were finally out of the woods after years of intensive therapy.

Then 2 days before her 7th birthday I got a call that shattered our lives. Her teacher was on the phone saying Hailey had had a seizure and stopped breathing. The paramedics were on the way and I needed to get to the school as soon as possible. If you have never experienced that phone call I hope you never do. It feels like you have been punched in the gut. You can't think, you can't talk, you can't breathe. The world stops and you feel totally helpless. I had a two week old baby and a husband who was working in another state. We were very lucky that my mother was visiting and in the school parking lot waiting on Hailey to get out of school. She rushed in to the nurses office and waited with Hailey till I got there. By the time I arrived the seizure was over and she was breathing normally. The paramedics felt she was fine and I decided to take her to the ER myself instead of going in the ambulance.

When we got to the ER no one was willing to say it was a seizure. She didn't present like a "typical" seizure since she kept her eyes open and didn't shake violently. She also threw up after the seizure so the dr's were sure it was just a virus and she would be fine. I knew in my gut that wasn't it but no one listens to the mother.

A month later I was woken up by my 6yr old coming to tell me she thought her older sister was choking. I flew out of bed and found Hailey on the floor unresponsive in the middle of a seizure. I called her father and the ambulance and held my child while she seized. It is so hard to see your child go through a seizure. You are totally helpless. Sitting there holding her and talking to her while waiting on the ambulance was torture and seemed to take forever. This time the dr's agreed it was a seizure and we were able to schedule tests and an appointment with a neurologist. 

Getting the tests done wasn't easy, after all there is always red tape. She did finally have a MRI and an EEG done. The MRI was clear, she didn't have a brain tumor. The EEG showed abnormal activity and she was diagnosed with epilepsy. The dr however did not want to medicate her. After all only a VERY small percentage of children develop recurrent seizures.

Turns out my child was one of the small percentage, a few months later she had another grand mal seizure. We also started to notice that she was having petit mal seizures through out the day as well. At this point we had moved to a new base and were seeing a new neurologist. The new neurologist did a repeat EEG and was shocked by the results. The EEG was "horrible" according to the dr. She has several petit mal seizures during the EEG and they were able to trigger a grand mal seizure as well. The estimation based on that test was that she was having over a hundred peit mal seizures a day. She was diagnosed as having two different types of epilepsy and started medication right that second. It was at this point that I learned that children with PDD-NOS are actually more prone to developing epilepsy. I really wish I had had that little piece of information before.

I am happy to report that she is only a few days shy of making it 1 yr without a seizure. She is on some pretty strong medications to stop the two different forms of seizures but she is responding well to them. She still has to have routine EEG's and blood tests and will for as long as she is on the medication. They tell me there is a chance she will outgrow her epilepsy when she starts puberty but there are no guarantees. It is hard to not know the future. It is hard to wonder if she will have to take medication twice a day for the rest of her life. We are taking it one day at a time and feeling blessed everyday that she is seizure free.