November is Epilepsy Awareness Month. I thought I’d take the time to address it and also talk about Emmett’s seizures, the types he has, things that can trigger them and why they’re so difficult to control.
Emmett was born on May 30th at 7:31pm and had his first seizure on June 1st around 10:30am. He wasn’t even a full 2 days old. I had noticed his eyes were darting back and forth earlier that morning and when our family doctor came in to do a standard new born check up on him I told him about it. He said it was strange and to keep an eye on him and to let him know if it happened again. The doctor said Emmett was very healthy and ready to go home when I was.
About 20 minutes later, Emmett had a grand mal seizure while I was nursing him. He was taken off to the NICU and given a loading dose of phenobarbital to stop the seizure. He had an MRI (to see if he had any injury/brain bleeds because of the attempted forcep delivery), spinal tap (to rule out meningitis/infection), blood work, urine analysis, you name it. Everything came back normal.
Grand mal seizures are the types of seizures most people are familiar with, the whole brain is affected and involves violent muscle contractions from all extremities. There is a common misconception that this is the only type of seizure. There are TONS of different types of seizures. It’s actually quite confusing and overwhelming because there are so many. And a classification can have a sub-category of a whole other list of seizures. It can be pretty hard to follow when the doctors get going talking about simple partial, complex partial, primary generalized, secondary generalized, myoclonic, atonic, tonic, clonic, tonic-clonic, etc etc etc until you’re blue in the face. See? Totally confusing.
Emmett only had grand mal seizures when he was a new born. Right now Emmett mainly has focal seizures. However, he’s shown signs of myoclonic seizures, tonic seizures, and we’re not sure but possibly absence seizures (also known as petit mal) too. Those are in the primary generalized seizure category. And then there are the simple partial seizures (these make him feel good/funny and will sometimes smile or laugh during or after). He honestly shows signs and symptoms from nearly every category of seizure type. They often will start as one seizure and turn into a different one. His last EEG showed that the seizure started in the right occipital lobe, which is where they usually always originate. This area of the brain is responsible for vision, which could explain why he has a visual impairment. During this particular EEG two weeks ago it then stretched to the front of his brain. His seizures have tended to hop around, especially when he was diagnosed with infantile spasms. He has been clear of those for a few months, and hopefully he is over and done with them. They’re extremely common in babies who have seizure disorders and they can be very debilitating and hinder development quite a bit. Fingers crossed he has grown out of these because they are nasty.
When Emmett has a seizure his eyes may shoot to one side and shake back and forth quickly. The muscles in his face are also affected and it may look like he’s frowning. Sometimes if he does this around people they’ll laugh because they think he’s making a funny face. I tell them he just had a seizure and sometimes get, “Are you sure?” Um, yes. I’m sure.
When they get worse his arms and legs are also affected. His muscles tighten his legs extend. And his arms will sometimes raise up while bent at the elbow, or he’ll slam his arms down fast. When all of these things are happening he tends to also make a little grunting noise. Sometimes it also looks like he’s shivering. They’re always different and always changing, never consistent.
Here’s a simple seizure classification chart:
I should probably talk about EEGs and what those are. EEG stands for Electroencephalography and they record and measure electrical activity in the brain. The technician measures around his head and makes little red marks all along his scalp. About 20 electrodes are then attached to the marks on Emmett’s scalp with gooey cream. The wires run to a computer and the information is recorded. This is not painful but they can be pretty stressful. The doctors usually like to do these when the patient is sleep deprived. We cannot for the life of us deprive him of sleep. If he’s over tired, he will fall asleep no matter what. These tests let us see where his seizures are coming from and what types of seizures he’s having. He has these really often since his seizures are so difficult to control.
Here’s the little man during his 24 hour EEG last December. They wrapped his head for this one since it was a 24 hour EEG. Usually they’re only 30 minutes.
When it comes to triggers for Emmett’s seizures, it can be anything and nothing at the same time. He will always have a cluster of seizures after he wakes up. He’s pretty sensitive to anything sensory, so when something touches him when he’s not expecting it, a loud sound that surprises him, lots of noises that can overwhelm him, getting too excited, being over tired…. these can all trigger seizures. The sensory stuff is mainly due to his visual impairment. He can’t see things coming at him so he doesn’t expect it. We usually make certain sounds so he can anticipate the touch and that helps a lot. But it’s tough knowing that simply touching him can set off his seizures. Giving him a bath, washing his hair, changing his diaper, cleaning his nose, touching his face and even kissing him. Any touch in general can trigger a small seizure or a cluster of seizures that can last anywhere from 3 minutes to 20 minutes. When he was a baby we were basically scared to touch him. It’s not as bad anymore but recently I’ve noticed he’s been a lot more sensitive to touch again. He does have seizures pretty often throughout the day. When they last just seconds it’s better for him (and for us) but when they get worse and last longer it’s pretty hard to watch.
As to what has caused his epilepsy in the first place, we have no idea. The doctors don’t know and they say we may never know. As Emmett gets older we may get more “clues” so we just have to wait and see what happens. We’ve done a few rounds of genetic testing and they’ve all come back normal. In a way it’s a relief but also frustrating. We’ve learned not to become too hung up on a diagnosis. Doctors may say one thing and Emmett could do the complete opposite. For now his only diagnosis is epilepsy and a visual impairment that may or may not be CVI (cortical visual impairment). I’ll delve into his visual impairment another time, that’s a whole other blog topic.
The doctors continue to be surprised by the progress he makes regardless of how many seizures he has daily. We have a tough little guy! He is so determined, so strong and works so hard. It’s really amazing to see. Ryan and I work with him a lot and Emmett currently has appointments with Early Intervention (support system for family with children who have developmental delays), Physio Therapy (assessment and treatment for developmental delays), APSEA (for his vision) and we also have a registered nurse visit the house regularly to help supply us with information and support as well. Between all of these and neurology appointments in Saint John and Halifax, pediatrician appointments and the regular ol’ checkups, we keep extremely busy! We’re very lucky to have all of these resources and not have to worry about about the cost. I can’t imagine what families go through in the United States who have little to no health coverage.
So there you have it. I tried to keep it short but that didn’t really happen! I did leave out tons of details, though, believe it or not. Hopefully you have a better understanding of what Emmett’s epilepsy is like. I’ve also been writing this since Thursday morning so hopefully it will make sense. I still get overwhelmed thinking about the last year and a half, which is probably why I kept needing to rest my brain typing all of this out. I honestly can’t believe how much has gone on since Emmett was born. It feels like a decade has gone by. Here’s hoping we have some luck in Halifax with the ketogenic diet! All the nerves are starting to set in. Wish us luck!