Jackson’s journey with seizures began at 14 months. We were on vacation down in Florida at Kevin’s parent’s house. I was feeding him a bottle and all of the sudden he dropped the bottle and threw his hands up in the air like I scared him. I thought I did scare him. Although I was just sitting there rocking him in the chair while he drank. I didn’t think much about it and didn’t even tell Kevin. A couple of days later he did it again during a feeding. This time I ran and got Kevin. We both thought it was weird and decided we should call our pediatrician back in Spokane. So I did and the nurse asked all kinds of questions – what was he doing when it happened, does he have a fever, has he acted sick, etc. etc. Finally she said she didn’t think it was much to worry about but to call when we got home and come in for an appointment. We did just that and our pediatrician said it sounded like a seizure. He ordered an MRI. On July 1, 2009 Jackson had that MRI which led to his diagnosis. A couple of days later Jackson was going in for an EEG. From there we went to the neurologist who said those hateful words – seizures, epilepsy. By this point Jackson was having seizures sometimes up to 10 times a day. They were fairly quick and didn’t seem to bother him much. However, the bad thing about seizures is the long term effect it has on your brain. In Jackson’s case, since he already has a half of a bad brain, we don’t want any more damage done. Jackson was right away put on an anti-seizure medication called Keppra. When that didn’t seem to help we switched to Trileptal. When we made that switch and Jackson stopped using Keppra, he became a different kid. He was more alert, interactive, and responsive. We didn’t realize the numbing effect Keppra had. So now we not only have to weigh the effect of the seizure meds on stopping the seizures, but what effect it is having on his daily ability to function. Since Jackson has what is called intractable seizures, meaning he will always have them and they will never be under control, our best bet is just to try and find a medication and dosage that makes his seizures less frequent and intense but also maintains he quality of life. The Trileptal didn’t work much either so we went into the hospital for what was supposed to be a three day/two night video EEG. Basically Jackson would be under constant video and have the electrodes attached to his head for the duration of the stay. Every time he had a seizure we hit this little button so they could record the EEG activity during that time. Jackson had so many seizures that we were there less than 24 hours before they got the information the needed. Two good things came out of that hospital stay – we found out Jackson wasn’t having seizures in his sleep (very good) and they were able to pinpoint the type of seizures he was having (myoclonic). Since we knew the kind of seizures he was having, we switched medication that is specific to those types of seizures. On the new medication – Topomax – his seizures did improve. But not for long. One other thing we have been told since the beginning is that Jackson’s seizures will get worse over time and may eventually become Grand Mal seizures (the fall to the ground and convulse kind). They are indeed getting worse. Whereas they were relatively quick (maybe 5-8 seconds long) and didn’t bother him much, they are now 15-20 seconds long, he is starting to shake (convulse) his arms and legs, and he is extremely agitated afterwards. We’ve upped the medication amount twice now, and I’ve taken him off a medication that was supposed to help with his vomiting but I felt was making his seizures worse (Moms – always, always, follow your gut), and they aren’t as frequent now. On a good day he will have 2-3, on a bad day he might have 5. But it doesn’t matter how many he has, what matters is that he is having them, and it kills me. I’d give my right arm to have the seizures for him. I really wish I knew what it was like to have a seizure so I could know how to better comfort him afterwards. All I can do is just grab him and hug him and tell him it is going to be ok (a lie). Sometimes when he has one I get scared that it won’t stop. Sometimes, I get infuriated and want to throw things and scream. Other times, I cry. Just having to sit back and watch him suffer through a seizure is the most helpless feeling I have ever experienced. It sends me down the dangerous road called “Why my son?” Being on that road makes me look epilepsy in the eye. Facing your nemesis every day is a strong motivator. I can’t cure Jackson’s epilepsy, but I can fight it. I may lose every round but at least I can try. Knowledge is power, and I am going to start filling my brain with knowledge about epilepsy. I just hope I can learn enough and be strong enough to take an aggressive approach to treating Jackson’s epilepsy, one that will make his quality of life a little better.
When I first heard Jackson had epilepsy I remember thinking “He’ll never be able to rock climb.” That was really hard for me. I wanted a little climber. When I was pregnant I would look at the little full body harness and tiny little rock climbing shoes at REI. I looked forward to family climbs with my boys. I wanted to share Kevin’s and my love of climbing with our little boy. Sadly, I was already limiting Jackson on what he could do. Now that time has passed, I’ve altered that thinking. Jackson can and will climb someday. He won’t be able to lead climb, and no matter how small or easy the climb he will constantly have to wear a helmet. But with the support and love of everyone around us, Jackson will get to the top of the climb. And when he does, we will have won a round with epilepsy. That day is going to come Mr. Epilepsy, so get ready to lose!