By the time I got there all tests had been run; blood work, CT, EKG, all the normal ones. Everything came back fine. They told us I must have missed a fever he had (I told them he didn't have one, why can't doctors listen). They told us that 1 in 10 will have a seizure in their life, and there was no way it would happen again. No big deal.....
After a 3 week wait, and another tonic clonic on Halloween, we finally saw the neurologist. We were told sometimes this just happens to kids (2-3 in 100 have childhood epilepsy) and usually there is no known cause. His EEG came out normal with, as he put it, "A spike or two that might have been something." An MRI was ordered just to be sure, and we were sent home to start the second medication of many to come.
Ethan continued to have large seizures. They would occur every 1-3 weeks or so. We would get so anxious when more than a week had gone by, and once a seizure hit, it was almost a relief. We could finally breath for a few days. During this time our lives started changing. We had a 3.5 year old we couldn't let out of our site. He couldn't play alone, he couldn't climb the stairs to his bedroom, and he could no longer play on the playground. He also had his MRI. It was so scary to be holding my baby girl outside the room, and watching them bring the gas mask over his face to put him out. He, of course, did great. It did come out normal which was a huge relief.
|Doggy visitor before his EEG.|
There we sat, happy for 5 days because we had almost convinced ourselves that it worked this time; we finally found a drug combo that stopped these horrible things. Our big concern during this time was the regression we had seen. Ethan no longer knew his colors. His first guess was always green then yellow, but he had no idea. He also lost the ability to count. He could previously count to about 15, now he says one-two-six.... My 3.5 year old couldn't even count to 3. He also used to be able to draw us pictures. His favorite movie when I was pregnant with Taylor was Up. He would draw a house with balloons coming off it. Now all he could do was scribble.
He went to school that Thursday (which would be his last day) and when I went to pick him up I was told he had hit his ear. His ear was all bruised up, but no big deal. I got Taylor strapped in her car seat, and went to strap Ethan in and he had a tonic clonic. People stared, or walked away as I tried to hold him in his seat as his body violently shook. The seizure passed, and he fell asleep and I pulled out to go home. Right as I turned onto the street he had another. When I finally got him home he was exhausted and I laid him down on the couch to sleep. I kept a very close eye on him, and he started seizing again. This one started out as a typical tonic clonic, and morphed into an atonic/myoclonic type thing (I am obviously no doctor, lol!). This episode lasted a total of 11 minutes. I administered diastat, and it didn't stop for an additional 5 minutes. At this time our neurologists informed us that his case was just above them, and we needed to see an epileptologist..... Really wish they would have told us that a month before. We were referred to The Children's Hospital. Here is a video of kind of what this seizure looked like. Once again, this is graphic so don't click the link if it will bother you. http://www.youtube.com/watch?v=DKq4VDtSIyk&feature=related
|Getting wired up.|
We are scheduled to be admitted to the hospital March 6th to start the diet. We will be there 4-5 days to slowly introduce the foods and watch his body for a reaction. Although this is a "diet", it's not necessarily good for him. It is deficient in many nutrients, and made up mostly of fat. The ratio he's going to start on is a 4:1. That means he will have 4 grams of fat for every 1 gram of carbs and protein. The diet is basically broken down into thirds as far as success goes. A third has a greater than 80% decrease in seizures, another third has a greater than 50% decrease, and another third sees no decrease. It also seems to have alot of positive effects on behavior and cognitive ability. We are really hopeful for the diet, but know it isn't the miricle cure for everyone. If we see a 20% decrease in seizures that will be a huge success! As it stands he is having anywhere between 5-20 seizures a day, and we suspect many more at night. If you have read this far than I am shocked, lol! That has been our last 4 months in a nutshell, and there will hopefully be many more positive posts to come!