Story #5: The First Neurologist

Rose’s first visit to a neurologist was two months after her first official epileptic seizure. During the previous weeks she had tried one drug that failed and was on a second. Many tests had been run including an electroencephalogram(EEG). She had experienced a second seizure the month before the visit. We were anxious to learn everything we could from this appointment.
Dr. T’s diagnosis was complex partial epilepsy. This meant that Rose’s seizures started in a certain place in her brain and then generalized to a full, grand mal event. This made sense to us because many of her supposedly febrile seizures started with chin twitching. Rose referred to these as a “tornado in her mouth.” She could not speak during these episodes, but she could point to her mouth. That little aura event was so helpful in those early days. The aura soon disappeared, so that we were all surprised by Rose falling to the floor.
Since her seizures were lengthy, Dr.T advised us to get CPR training. She recommended that we call 911 for any seizure lasting for more than five minutes. We knew that longer seizures meant danger to her brain and life. We vigilantly watched her. Rose was a very active little girl, so this was not easy. She always stayed within earshot of the person responsible for her. We started tag-teaming back then. Just to make sure someone was always near-by and alert.
The neurologist evaluated Rose physically and mentally with simple tests. She was extremely bright and was evaluated as entry-level first grade, although she was just entering her last year of pre-school. Dr.T instructed us to watch for developmental back-sliding and side-effects involving Rose’s gums. After our experience with her first drug 1T, I knew that such changes were plausible. We hoped that this second drug would do its job without side-effects.
The plan was to stay on drug 2D for three years and then wean down and eventually off, if no more seizures occurred. We were glad to hear that this may be a childhood condition which may eventually diminish. I am not sure if that was an accurate assumption. Our new goal was three seizure-free years.
We jumped through all the seizure-prevention hoops. Rose took all medications on time. She was encouraged to take afternoon naps even if it was just quiet time in her bed. We still diligently watched for fevers and treated each immediately with a red or pink over-the-counter non-steroidal anti-inflammatory drug(NSAID).

Seizure Mama speaks to parents:

The term SUDEP(Sudden Unexplained Death from Epilepsy) had not been coined at this point. We knew that during Rose’s first long seizure that her heart may have stopped. We knew that the longer and stronger the seizures were, the more dangerous and life-threatening they were. This was always in the back of our minds. It is still in the back of our minds. Rose is twenty-six years old and away at college, but that fear is still here. You must go on with your life despite this threat. Uncertainty is present in every life, you just got yourself a big ol’ dose of it to hide somewhere.

Now that we know one of Rose’s triggers is red dye #40, I went back through all her records to see if there was any correlation between her red medications and seizures. I found no correlation for the prescribed medications, such as liquid antibiotics that were red, pink or orange. There is no way for me to track all the colored over-the-counter liquid drugs. As a precaution, we now avoid anything red.  Read food labels. Even if the food is not red, pink, orange or purple, it may still contain red dye.

Author: Flower Roberts

I am a garden blogger and a mother. This blog is about my daughter Rose and her triumph over epilepsy. We are in the process of completing a book, Watching Rose Rise. We need folks who understand life with seizures to give us some feedback. Rose is off at college right now so I, Flower, am running the blog PLEASE come and join us. We want to get this right.

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