epilepsy lesson

Ever since we had our hearing we have been re-playing in our minds things we could have said better. Overall things went well and we feel good about it, which is great.  One of the areas that we wish we could have been more clear on was actually the basics about epilepsy. Our expert witness jumped right in talking about traumatic brain injury and the judge had no idea how this related to epilepsy. However, it is key to understanding Calvin's condition....

So, here's a basic lesson on epilepsy. There is more to epilepsy than just seizures. Of course, seizures are 100% part of the disease and necessary for a diagnosis of epilepsy to be made. However, there is so much more.

Here are the 6 parts of the disease.

1. Seizures - there are many kinds. Grand mal seizures are the kind where people are shaking violently all over their body. There are mini- mal seizures, simple partial seizures, complex partial seizures (Calvin has these - they effect more than one part of the brain, involve body  movements and loss of consciousness and no memory of the seizure when it is over).  Some seizures the person loses consciousness, some the person does not.

2. Pre and post seizure activity.  Before seizures some people experience auras - weird feelings, smells, or sensations. For some people the aura is hours. For others it is seconds. I met a girl who has an aura about 10 seconds before a grand mal seizure. For her it is just enough time (usually) to sit down or put down whatever she is holding so she doesn't get seriously injured during the seizure. I met another person who always gets sick and throws up before a seizure.  Not everyone experiences auras before seizures. For the type of epilepsy Calvin has, sometimes the auras involve extreme mood and behavior problems. We are not sure if Calvin has these auras or not. He certainly has the extreme mood and behavior problems but we are not sure if they are auras.

After the seizure there is a post-ictal period, often involving the intense need for sleep. Seizures are very active and intense activity for the brain and the brain will need rest after a seizure. Calvin used to have a lot of episodes of pallor followed by deep sleep. He would fall asleep on the floor, at school, in the car, at the dinner table. He would just look at me and say, barely audible, "i'm tired" and then instantly go to sleep. We suspect looking back that these were seizures he was having that were not manifest in the usual way.

3. Sub clinical seizures -  Seizures are intense activity in the brain of rapid firing of neurons. This can happen anywhere in the brain. Sometimes it will happen and there will be nothing on the outside that indicates the seizure is going on. If it is in the motor strip (the part of the brain controlling arm and leg movements) then that movement will be seen. But, what happens if it is in the part of the brain that controls smell, or rage, or vision? You could smells strange things, get super angry or see "things" ....  Calvin has most definitely had sub clinical seizures. He may still be having them. It is hard to say.

4. Brain Damage.  Seizures cause brain damage. Imagine that your neurons in your brain are like an electrical wire designed to carry a current. It can function properly for a LONG period of time, however if you over stimulate the wire, giving it too much voltage you can damage the wire or even cause it to burn out permanently.  Translated to the brain cells, that means the repeated seizures along a certain pathway can kill the brain cells.  Calvin's MRI shows evidence of brain damage in the area he had his seizures.  Of note, his brain damage is more than likely what can account for a lot of his behavior and mood problems.  I am sure you have heard of people who have stroke and then turn into a mean grumpy person. That is sort of what Calvin is like.

5. Medication. The medications that treat epilepsy are not without side effects. Since the epilepsy itself is over active neurons, the medication works to slow down the firing of those neurons.  The problem is that slowing down the misfiring neurons with a medicine will also slow down the "normal neurons" so overall brain function is slowed. It is a bummer.   No medication is without side effects. Many also effect mood, are tough on the stomach and have other undesirable effects. We have been lucky that our first medication has worked with Calvin and the side effects have been minimal. of course we can really see or measure how much it slows him down cognitively but it is nice that he isn't having other side effects on top of that.

6.  Epilepsy is a progressive disease. It is not curable. It is treatable with medication in some cases. Often even after treatment is successful for a time there will be breakthrough seizures as the disease progresses.   Part of the reason epilepsy is progressive is that the brain "remembers" the epileptic pathways so once you've had a seizure it is easier for you to have another. Think of learning an instrument like the piano. If you practice scales every day, eventually you will not even have to think. Your fingers (and brain) will just know what to do. Or, in a sport where you condition your muscles to kick, hit or shoot just perfectly. Likewise, the brain creates these pathways of rapid firing and the brain remembers and repeats them, often adding to them so that seizures get worse over time. That is why dr.s do their very best to stop seizures completely with medication. Once you have them, they will progress.