Meet Jayla
1) My connection with epilepsy is my 8 year old daughter was diagnosed with epilepsy when she was 2.
2) Our journey with Epilepsy started when Jayla was 16 months old. She was in the backseat of the car, I thought she was sleeping and snoring, when I got home I found her unresponsive and blue in her car seat. We called 9-1-1 and they came and informed us that she was having a seizure. That seizure was 45 minutes long. The doctors said that it was because she had H-Flu and sent us home. The next one came a month later, this time it was an hour and a half but the doctors said this time it was due to another virus and sent us home again with no answers. The third seizure she was at the playground and just dropped and started twitching. I brought her to the hospital this time because the twitching stopped quickly but I wasn’t sure if she bumped her head. The CAT scan was fine so they sent us home with instructions to check on her every hour in case she had bumped her head. I woke up to check on her to fine her blue in her crib not breathing. EMTs came and gave her several rounds of anti-consultants but nothing would stop the seizure. This seizure lasted two hours. They admitted her for tests and finally diagnosed her with epilepsy. After the third seizure she could no longer walk, talk or eat on her own. We tried several medications until we found one that worked.
3) When the journey all started our life was constant worry when the next one would come and never sleeping. The first two and a half years of her diagnosis I did not sleep for more than a few minutes at a time in fear I wouldn’t know she was having a seizure. But since medication and our awesome seizure dog, Shuffle Hop Step, provided by Chelsea Hutchison Foundation, and an oxymeter at night, our lives are pretty typical. I go to work she goes to school, she takes dance, cheer-leading and gymnastics. We just hit the one year seizure free mark which is exciting but terrifying at the same time!
4) I have great support, my husband, family and church help me to deal with all the stress and care that comes with the diagnosis. Not to mention Shuffle which alerts very well for seizures.
5) I would like others to know you can’t catch it. For a long time Jayla never got invited to parties or play dates, it felt like people were scared of catching it or something. Also that everyone’s seizures are different. I once got told that I was lying about her having seizures because she didn’t have convulsions.
Medication and Shuffle, and our monitor has made the biggest difference in this journey. I don’t know where we would be with out any of them!!