Our Epilepsy Story

Rachel wasn't born with epilepsy; at least, we don't think so. We never saw any indication of seizures until she was 8 years old, and crawled into our bed in the middle of the night, saying that she'd had a nightmare.

Brett was working nights then, and out of town for a few days at a time, so I had the whole bed to myself, unless Rach decided to sleep with me. She's an only child, and I let her do it often. We were a comfort to each other, unless I woke up with her feet in my back.

On this particular night, actually the early morning hours of April 24th, 2003, Rachel had crawled into our bed, and we'd gone right back to sleep. An hour or so later, about 4:30 a.m., I woke suddenly to the feeling that we were experiencing an earthquake. The bed was shaking. Then I realized that there was a strange sound behind me, and it was coming from Rachel.

I leaped out of bed, and turned on the bedside lamp, all in one move. There was my baby, eyes wide open, body jerking, bloody foam coming out of her mouth, and the next thing I remember was the voice in my ear, coming from the phone I don't remember dialing, "911, what is your emergency?"

I gulped and managed to choke out "I think my daughter is having a seizure!" I had never seen one before, and by the time the 911 operator started asking more questions, the shaking had stopped, and Rachel was so still that I thought she might have died. I dropped the phone, and flung myself over the bed to check her pulse. It was there, strong and fast, and she was breathing well.

The EMTs arrived, checked all of her stats, and by then she was awake, and really cranky at having to be poked and prodded by these strangers in the middle of the night. We took a ride to the ER, where some minor testing was done, and then we were sent home with the diagnosis of febrile seizure. I knew that was wrong. She was too old, for one thing, and the only sign of illness she had was a mild headache and a low-grade fever of about 99 degrees. We were home for about an hour, with Rachel sleeping on the sofa in her hospital gown, when she had another seizure.

The same EMT crew arrived, and we were off to the hospital again. This time we wouldn't come home for 10 days. Rachel endured CT scans, an MRI, and even a lumbar puncture. We could hear her screaming from that out in the hallway, where they made us wait. Within 12 hours her pediatrician had ordered her transferred to the children's hospital in Portland.

There came more testing, more bloodwork, interviews and questions by the doctors, trying to determine what might have caused this. Meanwhile, the seizures continued, and she was pumped full of drugs, some of which caused psychosis, and some of which reduced her to the cognitive level of a 3 year old. For half of one day all she said was "I love you" to everyone who came by.

We still don't know why Rachel has seizures. The best guess is a virus that traveled to her brain, causing encephalitis. I asked at her most recent neurological visit what her official diagnosis is. It's a long answer, and is still somewhat changeable: Bi-lateral idiopathic partial onset temporal lobe epilepsy, with secondary generalization. You could also throw in 'medically refractory', as we still don't have great control. She doesn't have the big tonic/clonic seizures, as long as we don't skip a dose of meds, but the partials still come with some regularity.

Rachel has been on combinations of several medications since this adventure began, and has also been implanted with a Vagus Nerve Stimulator, which helps her recover from her seizures more quickly, but doesn't seem to be able to keep them from starting. Here's a photo of her daily medicine/supplement intake, as of today's date...these are always subject to change...

At the top of this image are her morning meds: Keppra XR, Tranxene, Vimpat, Zoloft, Inderal, Protonix (for GERD), Vit D3, Claritin and a progesterone supplement.

At the bottom are her daily evening meds: Keppra XR, Vimpat, Tranxene, Inderal, Vit D3, Vit B6, and a multi-vitamin.

In addition to these, she's also been prescribed Klonopin as an emergency med for when she has panic attacks, and we have emergency Diastat also, which we haven't had to use in a couple of years now.

The seizures and anxiety made it almost impossible for Rachel to attend regular high school classes, so she's now enrolled in an online charter school, and it seems to be working okay so far. We're still in the initial few weeks of it, and it's a lot of work to stay caught up, but we're hopeful that it will be a good fit.

Rachel has a lot of challenges to work with, but she has a lot of support, too. Our biggest hope is that being teamed with a Seizure Response Dog will help Rachel achieve the independence she dreams of, while making it easier for us to let her go. No 16-year old should have to sleep with a video monitor watching their every breath, but without it we often wouldn't know if she were having a seizure.

Sudden Unexplained Death in Epilepsy is real, and it takes many thousands of lives every year. People can, and do, die from epilepsy. Many times they could be saved if someone knew they were having a seizure. Having an Assistance Dog won't stop the seizures, but having a dog trained to raise an alarm when she's having one can mean getting help more quickly, and an improved quality of life.

As Rachel's parents it is our duty and our privilege to do everything we can to make the world a safer place for her. The more we can do to educate people about epilepsy and seizure first aid, the better off Rachel and other people with seizures will be.

Thanks for sharing our journey.

-Kelly and Brett Cobb