DAD, CAN YOU CREATE A LIGHT THAT TURNS ON WHEN MY BRAIN SWITCHES OFF?
With this question on March 15th 2015 during our bedtime-ritual with my son, my life took a new direction. Private and professional became one. Suddenly all that had foregone seemed only a preparation for this moment. But our story actually started 6 years earlier and I want to share a bit of that story here.
When he was five years old, our son had great plans, especially to become an inventor. But in the beginning of 2009 “shaking” came into his and our lives … The first time my wife and I saw it happening, we were in the kitchen. Both of us knew instinctively that this would not just blow over. The hollow gaze, the clinging in the air, the convulsions and especially the anxious, support-seeking look on his face. And that had happened to him regularly, for a while already … “That’s called “shaking” daddy, haven’t you seen it before?” No, we had not seen this before. But a few days later we could no longer miss it, several times a day. And the puzzle pieces of the diagnosis were laid painfully slowly hospital visit after hospital visit.
The notebook became fuller and fuller, more lines were added every day. Until a page per day wasn’t enough. His dreams became more awful, his periods of sleep shorter. Sometimes he did not recognize us anymore and we did not recognize him either. Our son was no longer our son, but the birthmarks were still in the same place. Still, the days went by and the hope remained that we would be able to get some sleep, just sleep through the night.
We heard terms like “cognitively impaired” and “refractory”, but what did they mean in real life, outside the hospital building? And with again a new cocktail of pills we saw something change again. Did you notice that too?
We talked about a different school and had him switch. He made new friends; and the new seizures are now no longer “shaking”, they are now “on pause”! And “on pause” is better. But even with “on pause” the fears remain. Fears for today, for yesterday, for tomorrow and for the future. But “on pause” is ok. And we continue to look for the best possible medicine combination. Sometimes this goes wrong, then “on pause” goes away again and it becomes a very ugly thing, which we do not have a name for yet. So we return and silently hope that “on pause” is still there.
“People are always angry with me.”
What do you mean? No, people are not angry with you. You can sometimes be a bit cheeky and of course the teacher and we are angry with you then! You also have to listen and behave well.
“Put on your clothes, brush your teeth, we have to leave, the bus is here.” “Hurry up! You’re late for the bus.”, “The bus is almost here and I’ve already asked you three times and you haven’t finished yet. It’s the same thing everyday … Yes, I’m angry. No, I’ve already asked three times! ”
… How? … You only heard it once? Could you have been “on pause”? I do not know either, I was busy with the schoolbag and lunch.
But now I understand. And the teacher is angry? A light? That switches on when you go “on pause”? Because I am “in digital”? Let me think about that …
Son, is this the biggest challenge you have with your epilepsy? Really? Then we must be able to find something together!
And so I dived into EEG technology, talked to other parents, teachers, children, experts and specialists. And I learned that we all have the same need: objective information about seizure frequency.
And when a light is important for the child and teacher in the classroom to let them know “I’m on pause, I’m not here for a moment!”, then there are less misunderstandings, then the teacher knows what piece of subject matter has to be repeated , for which task a little more time has to be given, why you are so tired or sometimes it is so obvious. And we all realize that they really are there, the seizures.
At the moment we also collect objective EEG data in daily life, every day, in the classroom or at home. This is objective information that simply does not exist today. Then we know as a parent whether it was a good or difficult day, whether we rest in front of the TV or whether we do homework first.
But it is also important and objective information for the parent and neurologist to better tailor or adjust medical treatment.
And even for science to test new drugs faster.
Thank you, Daan, you are a true inventor.
epihunter link here