Like many mothers dealing with a child’s chronic illness, I have had to become a clinical researcher, develop my own medical opinions and assert myself to demand the standard of care I feel he’s entitled to.
LaTonya Hicks, Office Manager at Siren Interactive, contributes this post:
As a mother you want to protect your children from harm, and you do your best to ensure they grow into healthy, educated, responsible adults. But be that as it may, sometimes life can throw you a curve ball when you least expect it.
My son was diagnosed with Juvenile Myoclonic Epilepsy (JME) at the age of 13. He had his first grand mal seizure on my daughter’s 18th birthday. The doctors did not medicate him at that time because they did not find any abnormal activity in the brain, and said it was a possibility that he might never have another seizure again. After an overnight stay in the hospital and a series of tests, he was sent home the next day, and for the next 3 months I was on guard.
It’s a feeling of sheer terror to watch your child go through something that they are not even aware is happening to them. I thought I had lost my child. When the seizure stopped he stopped breathing. The feeling I had at that moment will never leave me. It’s one that I never want to experience again. To this day I am unable to sleep through the night. I resolved to educate myself about this condition.
Epilepsy.com defines epilepsy as: a disorder of the central nervous system, specifically the brain. In simple terms, our nervous system is a communications network that controls every thought, emotion, impression, memory, and movement — essentially defining who we are. Nerves throughout the body function like telephone lines, enabling the brain to communicate with every part of the body via electrical signals. In epilepsy, the brain’s electrical rhythms have a tendency to become imbalanced, resulting in recurrent seizures.
Juvenile myoclonic epilepsy is one of the most common epilepsy disorders. It accounts for about 7% of all cases of epilepsy. People with JME have myoclonic seizures – quick little jerks of the arms, shoulder, or occasionally the legs, usually in the early morning soon after awakening. The myoclonic jerks sometimes are followed by a tonic-clonic seizure. Absence seizures also may occur. The seizures of JME may begin between late childhood and early adulthood, usually around the time of puberty. Fifteen percent of children with childhood absence epilepsy later develop JME. It also is more likely in people who have family members with generalized epilepsy. The intellectual ability of people with JME is the same as that of people in general.
As a mother, you think you will notice anything abnormal about your children. What I didn’t realize is that my son had been living with this disorder long before it was diagnosed. I used to wake up at the crack of dawn to the sound of him kicking the wall and just assumed he was tossing about. I would sometimes open his bedroom door and see him twitching his legs and I’d try to wake him, which was always hard because I now know that in that state he was not conscious. I just thought he slept really hard. Later I realized he had been having seizures in his sleep all along.
After my son had a second seizure (a violent one) and then another in the emergency room within minutes of arriving at the hospital, the doctors were willing to release him that same day but again, without medication. Their explanation was they couldn’t find a problem after a series of tests (blood work, EEG and CT). The emergency room physician stated that because the seizure activity in his brain was less than 30%, they were not going to medicate him. By then I had done some research about seizures and I knew there was medication to help prevent or at least lessen seizure activity in the brain. I lost it …right there in the emergency room. There was no way that after what I had just witnessed that they were going to send my child home without medication. I insisted that my child not leave the hospital without being diagnosed by a pediatric neurologist. I wanted an opinion from someone that specializes in the area of neurology. I had never been more afraid for my son’s life than at that moment.
Finally, with my persistence and after a consultation with the neurologist, my son was given medication.
I live by the saying “control the controllables”, because that’s all I can do. I make sure my son stays healthy by keeping up with his doctor’s appointments and keeping him active in after-school sports such as cross country, basketball and track (I found out that running is one of the healthiest activities my son could have incorporated into his life — it helps produce a greater flow of oxygen in the brain). Like many mothers dealing with a child’s chronic illness, I have had to become a clinical researcher, develop my own medical opinions and assert myself to demand the standard of care I feel he’s entitled to. And on Mother’s Day I will say a toast to all the others out there like me.
Cheers! Happy Mother’s Day.