No, no, it can't be...

Mr N was a healthy baby and toddler. He rarely fell ill. When he was 4 years old, he underwent a gastroscopy and ph-study which showed he had GERD (reflux disease). Apart from that and his Gilbert's disease, his health was never an issue to us.

Mr N age 5

When he was 5 years old, we were playing outside one day. I was chasing him and his little sister around the garden. I touched him, and it was his turn to chase me. I didn't run very fast, hoping he'll “catch” me. So when I heard his footsteps behind me slowed down, I stopped and turned around.

He was standing there, with a strange expression on his face. He was almost smiling. A kind of confused smile. His eyes were “funny”. I just knew in an instant that something's happening. Something strange. Something neither him, nor me could understand. I walked up to him, asking him what's wrong twice. Both times he said “I'm tired”. In a small, constricted voice. He tried to walk to me, but seemed unsteady on his feet. He missed me with about a meter, he couldn't walk in a straight line. I took him at the shoulders, and he collapsed onto the ground. Still conscious, just weak. I cradled him in my arms and spoke to him. He said he's fine. I looked into his eyes and his pupils were contracting sharply.

Next moment, he stood up and said he's fine, we must continue playing. I was like WHAT?? What just happened? Did I imagine the whole thing?? I told him to come inside and sit on the couch. I fed him a chocolate and gave him cooldrink. Thinking that maybe it was his bloodsugar or something? At that moment, my friend called. My voice was unsteady, so she asked why, what happened? I told her and she urged me to go to the dr.

I thought why? What do I tell them? That he fell? That's pretty normal for a 5-year old! He really was just fine now. Nothing wrong! After our conversation, I went to sit on my bed, away from the 2 children. And then I cried. It was just such a huge fright I experienced. Hubby came home from work, and when he saw me in tears, he assured me it's probably nothing. But I told him I still wanna make sure, so I phoned the pead's office for an appointment the next day.

At the pead the next morning, she said it's one of 3 things. Either epilepsy, or a vein in his neck that has some obstruction, or a blood thickening disorder. I was scared about the epilepsy, but she told me out of the 3 things, I must hope it's that. I was actually surprised how urgent and serious the pead took the whole thing. I mean, here was my son, apparently all healthy again. And it's not like he lost consciousness!

So off we went to draw some blood. It was traumatic to say the least. They needed so much blood, they had to poke both arms with needles. He screamed and screamed. It was his dad who calmed him down in the end. This all was on Thursday.

The weekend passed slowly. We knew something's up with our son, but we didn't know what. It was scary and confusing. I watched over him like a hawk. But nothing happened again. On Monday early morning, we were pushed in for an EEG. The brain therapyst was sitting at the computer. Mr N was linked to numerous wires that was connected to the computer. I sat to the side, watching what I could see of the graphs on the computer. Half-way through I saw the therapyst's shoulders slumped. And I knew.

After the test he told us that there is definitely epileptic activity, and we'll have to see the pediatric neurologist. We went to the pead, and she phoned the neurologist. He told the pead to send Mr N for a brain MRI in the meantime.

An MRI? Of my son??? Really? For epilepsy? Then it hit me! They were looking for a cause. Like a brain tumor. I felt feint. The next 3 days were pure torture. To know your son will be screened for a brain tumor. It was terrible. Just terrible.

The MRI was scheduled for the Thursday, 3 days after the EEG. We prepared Mr N really well. Showed him pictures of the scanner on the internet, and played the sound it makes to him. They said they're going to try for him without aneasthesia first.

He was a trooper! Lied so still, he didn't even twitch a toe. We sat waiting for the results for over an hour. My dad came along to look after Boeboe, who was just 2 years old. Once we got the results, we took it to the pead. She told us that it was clean!!! No cause for the seizures.

Two weeks later we got a cancellation appointment with the pediatric neurologist. He diagnosed Mr N with Juvenile Myoclonic Epilepsy. He was thorough and said nothing else is wrong with our little boy. He's doing well on all the tests. He's just a tad on the underweight side. Well, that we knew...:-) He was put on lamitrigine for the epileptic seizures. The medication is dangerous when taken at once in a high doses. You need to slowly adjust to the optimal dossage, in increments of 12.5 or 25mg. Mr N had to get to 100mg.

The first weeks were very, very difficult. The medication caused side effects which was horrible in a 5-year old. It caused him to bruise easily. His legs soon looked terrible, full of brown and blue bruises. It also caused constipation, which was already a problem with Mr N. After a few weeks, he got a rash from it, but fortunately this dissapeared after a few days. The worst side effects though, were the emotional upheaval, and the daily, awful headaches. The medication turned our level-headed, easygoing child into a cry-baby. It was so difficult. When do you discipline him, because he's crying over nothing? And when do you “excuse” him, because it's the medication talking? He, who usually only cried about once a week, was suddenly crying multiple times a day. It was so so sad.

Fortunately, most of the side-effects (except a little bit of emotional upheavel, and the headaches) tapered off after a few months. Though with each increment of the medication it would first worsen before getting better again.

Mr N is now 9, and has been on the medication for 4 years. It's going well. When he was 8, his EEG was clean, so the medication was halved to 50mg. This year his EEG was clean again, and the meds has been halved again, down to 25mg. If it's clean again next year, it will be stopped completely. We're hopeful, but scared. Happy and relieved, but cautious.