Carter’s Story
September 2007
Wow! That’s all I can say. Carter continues to amaze us every day. He is such a strong child. Don’t get me wrong, there are days when he protests his medication. There are days when he wants to stay up late playing outside instead of going to sleep. He absolutely hates getting his blood drawn, but hey, so do I.
I think deep down, Carter knows he is special. At the ripe old age of 5, I think he is starting to understand that he needs to take his medicine at breakfast and bedtime so he doesn’t have a seizure. He knows that the doctor needs his blood to make sure the medicine is working. And Carter knows he needs to sleep more than his brother and sister to stay healthy. That is what amazes me so much. Many adults cannot grasp that and my 5 year old can.
Two years ago when Carter was first diagnosed I was devastated. I had no idea what the future would hold. I had images of my perfectly healthy, developmentally on track child withering away with no thanks to Doose Syndrome. I couldn’t have been more wrong.
We tried a few different medications, none of which worked, and decided on the Depakote/Lamictal combo. It had the best effect on Carter’s seizures. The drops had improved for awhile but then they were back. After another VEEG in September 2005, we decided to give Prednisone a try. The benefits far outweighed the risks.
Our miracle drug, Prednisone, worked almost immediately for Carter. Sure, he had some effects but nothing too bad. What 3 year old wouldn’t look cute with chipmunk cheeks? At least we could see his cute little face because the hockey helmet with face mask was gone. Bye, bye!
The drops stayed away and in January 2006, Carter had a normal EEG. That’s right…normal! I asked Dr. Smith to repeat that a few times because I couldn’t hear him through my crying and I was in shock. And that very same day, Carter was approved to get a wish through Make-A-Wish.
Carter first wished for a peanut butter and jelly sandwich. I think the increased appetite from the Prednisone helped there. Then he got down to business and wanted to meet his hero at the time, Peter Pan. It was off to Disney we would go that October. The first thing Carter said to Peter Pan was “Do you like my new shoes?”
Back to reality…After 2 years of Special Ed preschool with speech and occupational therapy, we had some great news, and restored hope. The school was recommending that Carter attend “regular” kindergarten, all day kindergarten at that. There really was hope to beat the Beast.
So, August 29, 2007 I sent my middle child on a school bus to all day kindergarten. I was a wreck, he was thrilled! It was bittersweet. Would the teacher notice any seizure activity? Would he be too tired after the long day and have a seizure? But this was the day I had waited 2 years for. This was the proof that Carter was doing well and he was beating this. I worried myself sick, and keep in constant contact with his teacher, but all is well so far.
After Carter’s normal EEG over the summer, Dr. Smith decided to completely wean the Prednisone. Carter’s last pill was on November 30th. It is the medication that gave me my boy back. If I could hug Prednisone I would!
I won’t lie though, everyday since April 8, 2005 I hold my breath waiting for another seizure. I wonder if Carter really tripped or if he had a drop. I wonder if he’ll seize at night and if I’ll hear him. I wonder if he’ll have a seizure at school and they’ll know what to do. I even think about the future and wonder if he’ll be able to play sports and get a drivers license.
It’s hard but I try to take one day at a time. Seeing Carter smile as he waves to me from the school bus window, or seeing him score a goal in soccer, makes everything our family went through worth it. It has been 2 years since we have seen any seizures. For now, Carter is winning.
Additional information on Carter:
Loves Scooby Doo, Star Wars and Power Rangers. Carter has a Power Ranger costume he wears, even in public. Carter has a purple light saber because he says he is Mace Windu from Star Wars.
Carter is the sweetest little boy ever! He asks us how we slept, how our day at work was, and likes to give hugs and kisses.
Carter likes playing outside on his new swing set. He just got a big boy bike with training wheels and does a great job at riding.
Carter has a guardian bird outside his bedroom window. The bird made a nest in the gutter and has 2 babies. She protects Carter from monsters at night.
Carter loves to play soccer and baseball, and is very good at them too.
Carter wants to be a fireman when he grows up, at least that’s what he wants to be this week.
