Last year I wrote an article about Hydrocephalus for information purposes and to add to the resource guide Sylvia McGrath and I have been writing the past couple years for families/individuals who have chronic illness, learning disabilities and/or special needs. Section One (A-I) is done, available online and in the Canadian Library Archives.
I was asked to write about it, from a childs point of view. I chose to take the route of explaining it how I think my son would explain it to one of his friends or to another person in general. I wrote using terminology/words that I think most would understand.
As we know with most children, there aren’t too many details when it comes to stuff like this. Things are typically explained as much and in as little time as possible so they can continue on with whatever they were doing.
As I mentioned, since my son has Hydrocephalus, I used him to write this. I look forward to your feedback and comments.
Hi, my name is Patrick, I’m 14yrs old and I have ‘water in my brain’. In the hospital, they call it Hydrocephalus (Hi-droh-cef-a-lus).
All of our brains make ‘water’. The doctors call it, CSF (Cerebral Spinal Fluid). For most people, the ‘water’ gets soaked up in our bloodstream and then goes away when we go to the bathroom.
For me, the water doesn’t soak up. It keeps collecting and fills up the spaces inside my brain called ventricles (ven-trick-culls). When there gets to be too much water in them, I feel a lot of pressure in my head and I get bad headaches. Sometimes my eyes go funny and sometimes I even fall asleep.
The doctors have fixed it though, so I don’t feel pressure all the time or get headaches all the time. They put 2 shunts in my head. A shunt is a little thing they put in my head that has a dial and some small tubes attached to it. One tube goes from the dial into my ventricles, the other goes from the dial down into my stomach. You can’t see them when you look at me, they are underneath my skin. The doctors set the dials, and when the pressure in my head gets too much, the shunts ‘turn on’ and take the water out of my head. The water gets pumped down to my stomach where it gets soaked up there instead of in my head.
I go for Cat Scans (CT’s) once a year to see how my ventricles look. It’s a big round machine that takes pictures of your head. You have to lay very still when they take the pictures. It doesn’t take long at all if I don’t move.
If the pictures show my ventricles are bigger than normal, the doctor will do some other tests to make sure my shunts are working ok. If they look ok, then I go home and come back in a year so they can see how I’m doing.
Written Oct/11 by: Renee MacLachlan