Some Things I’ve Learned As A Mother Of A Child Suffering From Juvenile Myoclonic Epilepsy

Hi, it’s me again and today we’ll be discussing Juvenile Myoclonic Epilepsy (also known as JME). My daughter has been re-diagnosed with JME after her seizures came back, and it is a bit different from what she dealt with as a child. So I had to learn all about this condition, and there is a lot to know!

So I’d like to share some of my knowledge on the subject with you, including what exactly it is, and what type of seizures to expect from it.

What Is JME?

Juvenile Myoclonic Epilepsy is a common form of epilepsy that normally shows up sometime around puberty. JME accounts for 5-10% of all epilepsy cases, and is one of the most seen types of the disease in children.

It is also sometimes referred to as Janz’s Syndrome.

What Are The Seizure Types Associated With JME?

There are three main types of seizures that are seen in people diagnosed with JME, and these are -

Myoclonic Seizures 

Tonic-Clonic Seizures

Absence Seizures 

But let’s delve a little deeper into each of these, shall we?

Myoclonic Seizures 

Let’s start with the type of seizures that people with JME deal with the most, myoclonic seizures. These seizures will present as muscle jerks, typically on both sides of the body at once but occasionally (in 1 out of 5 people) it can be primarily isolated to one side.

The muscle jerks normally take place in the arms, but sometimes the legs can be involved as well. Some people may only have small movement in their fingers which may cause them to frequently drop objects.

Myoclonic seizures are usually quite short, a few seconds at most, but sometimes they may cluster together. This means that you may have one myoclonic seizure and then another one a few seconds later, this can feel like one continuous seizure. 

If they cluster so close together that the person doesn’t have time to recover then it’s called status epilepticus, which is thankfully rare in JME patients since it can be dangerous.

Myoclonic seizures in people with JME tend to occur within a few hours of the person waking up, whether that be from a full night’s sleep or from a nap. Lack of sleep is a major trigger, as is flashing lights. Either of these things could cause myoclonic jerks to happen.

Tonic-Clonic Seizures 

Most people with JME will have tonic clonic seizures in addition to myoclonics seizures. A lot of times, the patient will start to have myoclonics during the onset of their JME and a few months after that, the tonic clonics will begin.

Myoclonics will also sometimes cluster right before a tonic clonic seizure, so that can be a big sign that one is coming. And it’s important to know the signs, because tonic clonics are a lot bigger and harder to deal with that myoclonics.

There are two main phases of this type of seizure, the tonic phase and the clonic phase.

The tonic phase happens first. At this point the person’s muscles will all stiffen, they’ll lose consciousness, and they often bite the inside of their mouth. Then the clonic phase will start, at which time the person’s arms and legs will jerk rapidly for a few minutes.

Other things that may happen during a tonic clonic is that the person’s face might turn blue since they’re not breathing normally, and/or they might lose control of their bladder or bowels.

Tonic clonics will normally only last one to three minutes, but if it goes on past five minutes then the person will need medical help. When the person comes out of the seizure, they may be groggy, irritable, and confused at first.

Absence Seizures 

Absence seizures aren’t quite as prevalent in people with JME, compared to the other types of seizures we’ve talked about so far. In fact, they only happen in about half of JME cases!

There are two types of absence seizures, and although they are similar, there are some key differences.

With typical absence seizures the person will stop whatever they’re doing and just stare ahead, it looks like they’re “blanking out”. Sometimes their eyes will turn upwards and flutter. This type only lasts about ten seconds or less.

Atypical absence seizures will start in a similar way and the person will simply stare into space. But then you might see some movement that you wouldn’t see with the typical type, such as rapid blinking, chewing movements or lip smacking, and random hand motions. Atypical absence seizures will last about twenty seconds or more.

What Is The Outlook For Those With JME?

Overall the outlook for people with JME is quite good. It is possible to control the seizures with medication, although the more seizure types they suffer from, the more likely it is that it will take several medications to do the job.

Furthermore, after the person ages (especially after the 4th decade of life) the seizures might start to improve naturally. But most people with JME will have to be on medications all their life in order to prevent a relapse.

So most people with JME will find control of their disease and be able to lead perfectly normal and healthy lives. 

I hope you’ve enjoyed this article, and that you were able to learn something new about JME that you might not have known before. If you or someone close to you suffers from JME, please feel free to leave your story below. I’m here for you!