David was born with two major issues which the doctors felt from birth on would dominate his life. The first was cerebral palsy (CP). CP affects his muscles and his mental development. The other was hydrocephalus. Being hydrocephalic means that the fluid does not drain from his brain properly and thus builds up. If left unchecked it causes swelling on the brain and eventual death. Once this was discovered in David, a VP shunt was put in behind his ear to drain the fluid from his brain into his stomach where it is absorbed. The risk here is that his shunt can malfunction, clog or become infected. This has to be monitored and if any of these things happen, then he has to have immediate treatment in the form of antibiotics and a shunt replacement.
So you would think that these two conditions would rule our lives. They don't. They never have. In fact until David was 8 years old, we lived nicely watching David grow, thrive and learn. He was on no medication except for the occasional ear infection and we lived life just as most others do. What changed everything and turned our world upside down happened on January 21, 2008. That was the day I woke up to find David on the floor of his room. He was pale, lifeless and completely unresponsive. As I sat there waiting for the ambulance to arrive and holding him, praying that it would not be the last time, I wondered what the heck what was going on.
Once the EMS arrived, they told me he was post seizure. I had no idea what that even meant. As they worked on my baby and I stood by helplessly, I wondered how this had happened? Once in the PICU, the doctor told me that David had suffered a seizure and when I found him, he was on the other side of it or "post" seizure. How long the seizure was I have no idea, but he was running a fever so they surmised that his fever had probably jumped quickly sparking a febrile seizure. He spent 36 hours never opening an eye (likely do to the adivan he was given post seizure).
At the time we didn't know if this was a one time deal or if this was something new we were adding to our lives. The doctor put him on a seizure med and said that we would watch him. Once I got him home, I did what I do best. I panicked! This was new territory for me and it had made a sneak attack on my son and my peace of mind. We were good for about eight months and then another one hit. Again....another febrile seizure and I got to see it from start to finish. This gave us another PICU stay and caused me to face the fact that we might be dealing with more of these.
All was good after this until I started noticing, usually at night right after he fell asleep, that he would startle awake; eyes huge, grinding his teeth and making "oooo" noises. These episodes were short lived, maybe 30-45 seconds, but they were becoming more frequent. His pediatrician thought they might be acid reflux episodes and so he was put on reflux meds. They didn't stop, so I went to his neurologist with it. He wasn't sure what it was but thought an EEG might tell us something. Sure enough....the kid was having seizure activity all over his brain and these were mini silent (sort of) seizures. It was now definite....seizures were going to be a new part of our lives.
Since that day and the diagnosis of a seizure disorder, seizures have been the main ruling force in our home and in our lives. Here is what I know six years later about seizures and David's seizures in particular. In 2/3 of all seizure disorders, there is no known reason for them. They know that febrile seizures are brought on by a quick raise in temperature but the temperature does not particularly have to be high. A raise from 98.6 to 101 in a short period of time can bring on a febrile seizure. Febrile seizures can spark other seizures, but don't always.
Some people can have one seizure in their life and some can have many. Seizures can have something to do with hormones and at a certain age (late teens) simply stop. Seizures can be controlled with medication BUT when a child is constantly growing, certain meds either become ineffective or the child continually outgrows the dosage, and because of this, constant bloodwork is necessary. Sometimes seizures can be controlled on one med, but in many cases, it takes several different kinds to work with each other to control the seizures.
In David's case, his CP could be a part of his seizures, but because he started them later in his childhood, it may have nothing to do with it. One day David's seizure may simply stop or......he could have them his entire life. His seizures are not typically life threatening, but unchecked they could cause him to injure himself or choke. His seizures also tend to cause him to get more aggressive and agitated when he starts having a lot of them. Some of the side effects of his meds can cause the same issues, so he is on other meds to counteract these side effects. David currently takes 6 different meds and he takes meds 3 times per day. His meds cost over $2000/month.
A couple of years ago, David was implanted with a Vagus Nerve Stimulator or VNS. The VNS is in his chest with wires running to his vagus nerve where seizure activity I guess....tends to happen. He carries a high powered magnet with him wherever he goes. The VNS is a battery powered device that is on for 3 minutes at a time and off for 1 minute. This can be set for different settings but due to his current activity this is his new setting. In case a seizure slips through at that 1 minute interval, that is when the magnet is used. If you swipe it over the device when the seizure starts, it usually lessons the seizure time by about 80%. It was our hope that with the VNS we could cut back his meds, but so far that has not been a possibility.
Dealing with seizures I think, has been harder on David than his CP or hydrocephalus put together. The exception to this maybe his surgeries to walk. At times when his seizures are bad, I can see it frustrate him and wear him down. They have had him in the ER and hospital dozens of times and they have kept the family on vigilant guard waiting for the next seizure episode. To put it mildly.....seizures suck!
All this being said, if seizures are the worst of what we have to deal with on a day to day basis, then life is good. David is due for another EEG next Tuesday and then we should know more about his latest outbreak.
The thing about seizures is that they are brain related and truthfully, any good neurologist will tell you, what they actually know about the brain wouldn't fill a thimble compared to what there is to know. Slowly the puzzle of the brain is being put together, but for people like David, it isn't soon enough.
One new possibility that even our neurologist is starting to talk about is marijuana treatment. On studying it, it really does seem to be causing some remarkable results. In the treatment it is usually an edible and it has no hallucinogenic properties. What they are seeing with this is that people whose seizures can't be controlled any other way, are being controlled by this treatment. It is still in the experimental stages but the possibilities for this being a break through drug for seizures are looking really good. No....I will never be a proponent of pot for casual use(seen too much to go there) but there is no denying the health benefits of this substance.
So here we stand. David is doing well. His outside therapy has helped him immensely and everyday he uses his legs more and more. He is walking distances with his walker and kicking everything in site. He is a teenager with attitude and he loves to laugh and socialize. I would say he is right on track with every other 14 year old in this respect.
Yeah, seizures suck, but in the big scheme of things, David is doing great and we as a family are blessed!
