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Seizures in Children

My daughter was a normal little girl until she was stricken with devastating seizures at 10 months old. No one knows why, or even what is wrong with her. She was left permanently brain damage, and I am left with questions.

My heart sank as I woke her dad. We left immediately for the hospital. I kept telling myself during the 40 minute drive to the hospital, "Don't worry, you know how grandmas are. They over-react sometimes because they're worried. " Then the cell phone rings. It was her other grandma. She asked how far away we were and asked if we could make it in 10 minutes. "The life-flight helicopter is coming in 10 minutes. She's really bad." I knew at that moment that it was no over-reaction.

When we got tothe hospital, she was still seizing continuously, she was intubated, and she had 2 IV's drilled into the bones in her legs. No-one knew what was happening to her. It was not a febrile seizure, because she didn't have a fever until after she had been seizing for a while. They had to basically give her enough medicine to make her almost comatose before she would stop having seizures. She was then life-flighted to the nearest Children's Hospital. That was a helicopter ride that still haunts me. I have nightmares about the sound of helicopters.

When we got to the other hospital, she was put on a ventilator. She had an entire team of neurologists working with ICU staff to figure out what was wrong. She spent a day on a ventilator, 8 days in the pediatric ICU, and a month in the hospital between the neurology and infectious disease units. She had tons of MRI's, CT scans, EEG (shows the electrical activity in the brain), lumbar punctures, blood cultures, and random other blood tests. They tested for over 100 bacterial and viral infections. Everything was negative. An infectious disease specialist even tested her for things like bird flu, West Nile virus, and many other viruses. They told me that they tested for every disease they could possibly test for. Everything was negative. They said their best guess was viral encephalitis (a virus in her brain), but they would never know for sure because none of the tests showed a virus. Her white blood cell count was not elevated, and she did not have a fever. She was not sick prior to her seizure. Sh had never even had a cold. A geneticist tested her for genetic disorders, and of course found nothing. We have no family history of seizures, or anything really very significant.

Then came the worst news: "She has severe diffuse brain damage" Those words I will never forget. Nobody could tell me how bad. They said they thought she was blind, and did not know if she would ever walk or talk, or go to school, or even know who I am. My perfect little girl had been stolen from me.

Now Jaylen is home and improving some. It has been 9 months since my world fell apart. We learned that she is not at all blind. She had to get glasses because of a lazy eye, but sees very well. She started smiling again and babbles all the time. She says mama and dada occasionally. She sits with support and has learned how to hold her head up again. Just recently she started standing with support, but can't take any steps yet. She also rolled over a couple of times. She is also putting toys in ger mouth now and is eating baby food. I wake up and thank God every day that he has given me another day with my sweet, red-headed little angel.

If anyone out there has any information or suggestions about Jaylens "mystery illness" please comment back, or email me at [email protected]
I know that someone out there must know something