Sunday, May 06, 2012
Her seizures have not always looked the same. When Allie was one, she had seizures that caused head to jerk left and her arm to spasm in kind of sideways punching motion. That really freaked us out. We lived in rural Northern California at the time and the nearest neurologist was 275 miles away in San Francisco. We tried to describe the seizures to him, but our description fell flat. He was baffled.
The brain is a complex organ. When the brain sustains damage, technology only helps a little. Doctors are often left guessing and experimenting. Allie's seizures come and go. Sometimes seizure activity is high and frequent, sometimes she goes months without an episode. We've tried to manage her seizures with various prescriptions and mixtures of drugs with little effect except that she is often left lethargic and dopey. Drugs have not made a measurable impact.
Controlling the stimuli in Allie's environment has made the biggest difference. We noticed that Allie was having more seizures at home than at school. This was confusing to us. We thought it should be the other way around. For awhile, Allie had the highest occurrences of seizures in the morning when we were watching the news. We turned off the TV for several mornings and her seizure activity decreased dramatically. So we cut the cable.
When we shared this information with our doctor, we made the decision to start weaning her off of the medicines. She was taking three different kinds of meds at the time which meant we had to have her blood tested regularly to make sure she wasn't suffering tissue damage in her major organs. If controlling her environment achieved better results than drugs, we wanted to get her off the drugs. People with cerebral palsy have short life spans due to organ tissue damage, a common side-effect of drugs.
The recent bout of seizures Allie had on Friday started when she was in the sensory room at school. We're not sure if one caused the other, but it is the first time Allie has had a seizure at school in six months. She had five more throughout the day.
Friday night, I enlisted you all to pray. Saturday morning, Allie had one seizure as soon as she woke up and that was it. We had a quiet day at home that included a stroll through the neighborhood. She was fine all day. She was even ready for church Sunday morning. Usually, when she has a day of seizures, she has at least a week of them. Not this time, though, so thanks for your prayers.
Here is some more information about what Allie's seizures look like.
Startle epilepsy is a type of reflex epilepsy in which seizures are provoked by loud noises or sudden surprises. Most patients with startle epilepsy are only sensitive to one sensory modality (i.e. temperature, taste, sound, pressure); however, it is the unexpected nature of the stimulus, rather than the sensory modality, that characterizes startle epilepsy. (More...)
Post-traumatic epilepsy (PTE) is a recurrent seizure disorder that apparently results from injury to the brain. This injury may be due to head trauma or to an operation on the brain. (More...)
Reflex epilepsy is a condition in which seizures can be provoked habitually by an external stimulus or, less commonly, internal mental processes. Individuals with reflex epilepsy may have seizures exclusively in response to specific stimuli and not suffer spontaneous seizures; alternatively, reflex seizures may coexist with spontaneously occurring seizures. (More...)
Let me share this last piece of information with you. This isn't scientific, but it is something Susan and I have observed in Allie's life. When Allie goes through a growth spurt, sometimes that, we think, contributes to increased seizure activity. On the other side of it, we see improvement in Allie's cognitive abilities. So, as horrible as one imagines these seizures may be (and they are horrible to watch Allie go through - we just hold her and pray), we wonder if they are a part of the brain getting better.
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That's interesting. When I mentioned to Melody that Allie had a bad day of seizures, she said, "Maybe she's going through a growth spurt."
We will continue to pray for peace-filled, seizure-free days.
Love to you all!
I can't imagine how difficult it must feel to feel that helpless as parents/grandparents who can only watch. Sounds like you have made some great decisions though. Thanks for the update. Gotcha in prayer...
Thanks for sharing... heart-gripping, but interesting insights. May the Lord continue giving you grace and blessing you as He brings healing and development to Allie.
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