Juvenile Myoclonic Epilepsy
Today, March 26th is Purple Day, an international grassroots effort which is dedicated to increasing awareness about epilepsy across the world. On March 26th, people in counties across the world are encouraged to wear purple and participate in events in support of epilepsy awareness. Today I am wearing purple for Jordan.
March 25, 2024
Yesterday, the many questions and speculations were put to rest as we had Jordan’s neuro follow up. Below I will attach a link to a video that was taken the day of Jordan’s seizure January 13th while we were in Charlotte, NC.
History...
For those of you who don’t know, Jordan had febrile seizures from the age of 2-6. Febrile seizures according to Kids Health are convulsions that occur when a child has a fever above 100.4
(Febrile means “feverish.”) The seizures usually last for a few minutes and stop on their own. The fever may continue for some time. Most febrile seizures stop without treatment and don’t cause other health problems.
When Jordan was 5 years old and a few months, his febrile seizures disappeared without any medication and we thought they were a thing of the past.
Present Day...
Fast forward 14 years later to January 13th when Jordan had a random seizure which is the episode that has brought us here. When we were released from the hospital that day, there was not a diagnosis for us to leave with but we were encouraged to see our family pediatrician and follow up with a neurologist.
After his seizure, I felt so traumatized. There was not a moment that went by where I couldn’t stop reliving the moment over and over in my head, thinking about Jordan while he was away at school and hearing Mario calling out that day “are you serious, are you joking?” and turning around to see Jordan’s face of confusion and pain. Looking back at the video attached was hard to see the pain in my eyes. Pain because I am a problem solver and this was a problem I had no idea how to solve. This episode helped me find renewed strength in my lord and savior Jesus as he was the only one who could help bring me through and reconnect me back to him as well as scriptures that brought strength.
About a week after returning from Charlotte we had our initial neuro appointment and left with a prescription for anti seizure medication and two referrals, one for an eeg and another for an mri. Jordan opted to wait on his results before beginning any medication and I was comfortable with that as the medication that was prescribed was pretty intense on how he would have to schedule taking it as well as the quantity.
Tests/Imaging...
The eeg was so quick and painless and the mri Jordan said was ok but had noises that he could see how it could be disturbing for some.
The follow up...
Yesterday on the way to the follow up appointment, I told Jordan that whatever the outcome was, it would not change a thing but it would help us to know how to move forward. We arrived to the appointment and our neurologist reported his mri was clear however, the eeg did present signs of epilepsy which he stated he was sure would be the diagnosis based on the initial appointment, health history and previous seizures Jordan experienced as a child. He went on to ask if he had been taking the medication and Jordan reported he had not and we discussed the reasoning. He understood our concerns and opted for another medication with less side effects and a lower dosage.
What is the outlook?
What does this mean going forward? Well, this is a diagnosis he will not grow out of and will continue to manage and prevent through medication, proper rest and the reduction of stress.
Jordan’s epilepsy is known as Juvenile Myoclonic Epilepsy. According to Epilepsy Foundation, juvenile myoclonic epilepsy (JME) is the most common generalized epilepsy syndrome. It is usually first seen in adolescence and myoclonic jerks are often triggered by lack of sleep and flashing lights.
Seizure triggers are lack of sleep and fatigue after drinking too much alcohol which can be the most powerful causes of the myoclonic jerks, mental and emotional stress, especially excitement or frustration. Some individuals with JME have seizures that are triggered by flickering lights, TV, video games or lights reflecting off ocean waves or snow. These are called photosensitive seizures. With proper medication and monitoring, individuals with myoclonic seizures can go on to live a normal life with a normal life expectancy.
With the proper tools in hand, I do not doubt Jordan will go on to live a life of purpose while taking care of himself. I plan to continue to educate myself and help educate him and share my findings with others.
Click the link below to see the video.
