CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

Story TitleSeptember 6th of 2006 started as normal as can be, but quickly turned into a my worst nightmare. Jett was almost 2 years old (he would be 2 on the 15th) and he helped me and his dad (who was off work with a hand injury) get his two oldest brothers off to school and went on to play with his almost 4 yr old brother Joey and two of his cousins. During the course of the morning Jett kept falling strangely, I first noticed it when he was asking for something to eat and he dropped to his back. We had thick shag carpet so he didn't hurt himself and he got up laughing so I brushed it off and didn't think much of it. When it happened again I mentioned to my husband that it was very strange and asked Jett if he was being silly (as 2 yr olds often are). He just laughed and toddled off. The third drop concerned me and seemed to scare Jett, he began to cry when he got up. I pulled him onto my lap and told my husband that I thought we should call the Dr. but what would we tell him? Our 2 yr old was acting 'weird'? Jett hopped down and asked for crackers, I started to open them and he began to cry he dropped again and I immediately picked him up and he began to have a tonic-clonic seizure. I have worked in the health care field before and had seen seizures so I knew what was happening, however that didn't make it less scary.

I took Jett into our bedroom and laid him on the bed while my husband directed the other small children to another room. I made sure he was breathing and called 911. The ambulance got there and they took Jett to our local hospital. We live in a small town so the hospital was not equipped to deal with seizures, much less pediatric seizures. In an attempt to get the seizure to stop they administered diastat (rectal valium) with no affect. They gave another dose and still no change. They took his temp (normal) and his blood sugar (normal) then asked me over and over again to explain what happened. I think I replied, I am not real sure I could talk clearly I was so worried about my baby.

Once we got to the hospital Jett was rushed into the ER where they tried again to get the seizure to stop with more valium. The seizure finally started to stop and they were going to try and get a CT scan to see if there were head injuries (I told them he hadn't hit his head, but he was falling a lot). On the way to the CT scan he began to seize again and they gave even more valium. At this point Jett was starting to have trouble breathing (most likely due to the amount of valium in his system combined with the stress of a long seizure). They had to intubate him to keep him breathing. As I mentioned our hospital is small and we do not have a respirator that is set up for pediatric use, so a child that has been put on a respirator has to be bagged and air lifted (helicopter) to the children's hospital an hour and a half away. It takes the helicopter 20 minutes to get there, and driving takes an hour and a half. They required two IV's and of course do not let the parents travel with. 

That was the longest 1 1/2 hours of my life. My mother drove us (I was in no shape to drive) and I just prayed that he would still be alive when we got there. Thankfully, he was. They put him in a medically induced coma to keep the seizure from starting back up, they gave a host of meds and said all we could do was wait. They performed many tests, and MRI, an EEG, a spinal tap, and of course monitored his vitals round the clock. They could find NOTHING that would explain what happened. After 12 hours in a coma they allowed him to wake up. He was groggy and 'wobbly' with marked weakness on his left side, but the next day was almost completely back to normal. We had no answers, no assurance this wouldn't happen again, no advice on how to stop it or prevent it.

At this point I was told that some kids just have one seizure (although not normally as dramatic as Jett) and never have another, they weren't convinced that what we saw before his seizure were seizures, and the EEG was clear. We were sent home with no medication, very little info, and basically told "come back if it happens again." We were told it would probably happen again in the next few weeks if it was going to happen again. 

The next few weeks consisted of me following Jett around with pillows and stressing if he got more than a few feet from me. We didn't allow him to go down steps, or walk on concrete alone, so terrified it could happen again. Two MONTHS later, we thought we were well in the clear and were moving on when Jett was running through the house and fell with another seizure. This time we knew what to do, thankfully it only lasted 1 1/2 minutes and was over by the time the ambulance got there. He proceeded to have more at the hospital and this time we were transferred via ambulance (where mom gets to go along). He seized on the way to the EEG and they were able to see a remnant of the seizure. He was diagnosed with epilepsy at this point.

Of course we still had very few answers. There seem to be VERY FEW answers available. We were told we would start medication and his seizures would probably stop, he would be weaned off sometime in the future and he would most likely out grow them. They said 85% chance! I was relieved (and maybe delusional).

Over the course of the next 6 1/2 years, Jett has failed 9 different drugs, we know even less it seems now about what he may or may not do. The chance of out growing his seizures has shrunk to less than 1% now. The longer he has seizures that can't be controlled the less likely he will ever out grow them. Which is why we need a cure so badly!

Jett has a great outlook on life, he has been through a lot, we have had him in studies, he has been to Cleveland to the clinic twice for LONG VEEG's with no luck in finding a seizure focus to allow surgery. They are thinking now that Jett's focus is probably too deep to be able to be operated on. Jett is one of the lucky ones, he doesn't have many delay's due to the seizures, and right now he is doing well with the seizures being small and not too disrupting of his day to day life. But we know how quickly things can change and there are always going to be limits on what Jett can do.

He LOVES football, but will never be able to play (too risky), he would like to drive a car someday too, but for now both of those things are out of reach. Jett does very well with being 'different' he handles it with a grace that most adults struggle with. He is an amazing child, someday I hope he can be a 100% healthy amazing child.

CURE epilepsy

Marnie Nickelson
Jett's Mom




Jett's first seizure was more than 30 minutes long and ended up with him in a medically induced coma in the PICU after air lifted via AeroMed.

Jett has had many VEEG's and dealt well with all the testing. This was in Cleveland at the Cleveland Clinic.

Jett loves pirates and was always giving us his best

Seizures don't slow Jett down much. He loves sports! He is a wrestler and plays basketball and baseball every year. This was his first year playing t-ball.