***We are now nearing the end of our YouCaring time, and want to say Thanks to all of you who have read our story, or felt called to help out with a donation. Your support has meant so much. Please continue to follow along on our blog.***
Rachel is the 17 year old daughter of Brett & Kelly Cobb of Oregon, and has lived with poorly controlled partial seizures, and a panic disorder, since she was 8 years old. Recently, she was accepted as a client at Paws With A Cause©, and our journey for fundraising has begun. We are not required to raise any of the $30,000 it takes to raise, train, and place a Seizure Response Dog, but the more we can do to help acquire those funds, the sooner Rachel will have her Service Dog.
This is 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.
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.
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.
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.
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 17-year old should have to sleep with an audio/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.
Thanks for sharing our journey.
-Kelly and Brett Cobb