This is another guest post in the series “Faces of Epilepsy.” It was written by 4 year old Jayla’s mother Emily. Pay close attention to all the different kinds of seizures Jayla has had, and all of the different medications she tried to fight them.
“Our Roller Coaster Known as Epilepsy”
Jayla Claire was born 9/9/07, a week late, weighing 6 lbs 7 oz. She was born still in her amniotic sack, which doctors claimed was good luck. Well, the luck didn’t start from the beginning. We had to stay in the hospital for two days extra due to the fact that she could not keep her body temperature steady and she was jaundiced.
Once we got home she was a pretty easy going baby, although she had trouble taking bottles and had to be reclined in order to swallow. She also would wake up at night screaming like she was in pain several times a night and nothing would console her. At five weeks she ended up with MRSA. After we were all done with the MRSA, we took her to the ENT, GI, and swallowing specialist to find out why she had so much trouble swallowing and to see if the screaming in pain was from her stomach. Well, she got a diagnosis of tracheamalasia (which is weakened muscles in the trachea), clef in her vocal chords and acid reflux. She got put on thick-it, which thickened her bottles to strengthen her throat, and prevacid for the acid reflux. The prevacid did not end up helping the screaming fits, so we were lost on what was making my poor baby so upset. The screaming fits started happening during the day also and lasted hours!! Well, we went the next 12 months trying to figure out the screaming fits, and she started just getting a glazed look and she seemed not to be able to hear us. We got her hearing tested and it came back good. So once again… another mystery.
On February 4, 2009 our lives changed forever. We were in the car and I heard Jayla grunting in the back seat. I figured she was just snoring in her sleep and drove the 30 minutes home. When I got home, I found her in her car seat, blue, limp and foaming at the mouth. I kind of knew what was going on but didn’t want to believe it. My next door neighbor came out and confirmed my worst nightmare… she was having a seizure. My husband called 911 and off to the hospital we went. After 1 1/2 hours and 3 rounds of Ativan, the seizure finally stopped. She had a CAT scan, spinal tap, and blood work, all which came back normal but they called it a febrile seizure. We got sent home with Diastat but no answers. We went on with life wondering if it was going to happen again. It happened again in May. Once again we were in the car and I heard the gurgling noise again and I looked back and saw her blue and limp. I gave her the Diastat and called 911. This seizure was 45 minutes long and took 3 rounds of Ativan on top of the Diastat. When we got to the hospital she ended up having the flu and a fever, so it once again was determined a febrile seizure and we were sent home with more worry and fear.
Then on September 10, 2009, the day after she turned two, we were at the playground and she was standing next to me and fell and hit her head. I thought it was weird because she wasn’t moving at all. I didn’t understand why she fell. I picked her up, and a woman standing next to me told me Jayla’s hand was twitching. So I headed to the car to give her Diastat and the seizure stopped. Off to the hospital we went where they said she was ok and to just make sure to wake her up every two hours while she was sleeping since she had hit her head. Well, I followed the doctor’s orders and the third time I woke up to wake her she was blue in her crib, lifeless. I was terrified to touch her, but when I got the strength to she was breathing. I gave her the Diastat, called 911 and off to the hospital we went. This time she had to get 4 rounds of Ativan and 2 Diastat and the seizure finally ended after almost 2 hours. This time, at the hospital she had an EEG and they found slowing on the right side of her brain. She also got an MRI which came back normal. After the EEG and MRI she got diagnosed with Epilepsy.
She got put on Trileptal, but that ended up showing more slowing on the EEG so she got switched to Keppra. The Keppra made the EEG look better but Jayla broke out in a rash and was vomiting. So once again she got a med change and got put on Depakote. Depakote was AWFUL. She became violent and emotional. Our baby girl was no longer in that cute little body. She was a completely different person. She also, because of the last seizure, had a lot of regression. She stopped walking, talking, and could barely even sit up. So while we were going through all the medication changes she was also going through physical therapy, and speech therapy. Well, at least the therapies were working, because the neurologist wasn’t listening to me so she remained on the depakote. I switched neurologist and he finally took her off of it and she got put on Zonegran. She has been on it for a year now and it is great. She still has absence seizures a couple times a week and will have larger seizures if she gets over- stimulated, but we can live with that for now. We also got referred to a pulmonologist to get an oximeter so that if she has a seizure at night it goes off so I never have to find her blue at night again! Two years without sleeping more than 10 minutes at a time was exhausting, and it was so nice to be able to sleep again and not have to worry about my baby.
We now know that the crying spells that they thought was acid reflux was actually galastic seizures, and her glazed look was absence seizures, and that at the park when she just fell, was a drop seizure. I now wonder what would have happened if we had known the signs of seizures; would she have had all the regression, and hospital visits if we had just known the signs and had known she was having seizures all this time?
So we finally started settling in to the diagnosis and I stopped blaming myself for not finding out sooner that she was having seizures, when I got a call from my 7 year old son’s teacher. She told me that she thinks that she may be seeing petite mals while he is at school. I thought I had seen some signs – staring, confusion, – but thought I was just being paranoid. So our roller coaster ride is starting all over again, but this time I feel more prepared.
Emily wonders what would have happened if she knew the signs of seizures. Please share this post to help the next person out there who wonders, and to honor Jayla’s fight.