A Child's View Of His CF.


Dealing with the every day routine of CF from the point of view of a four year old boy who has just started school.Why: To express how it might be for a child with CF

Hello, my name is Robert and I have something called cystic fibrosis.

My best friend at school is called William. We play Star Wars. He is always Luke Skywalker and I am Darth Vader. “Come over to the dark side.” I tell him. He always gets away because the force is with him.

I wish the force was with me. Then I wouldn’t have Cystic Fibrosis and I wouldn’t have to take my creons every day and have physiotherapy in the morning and at bedtime. I have to take the creons because inside my body, near my stomach (Mummy drawed me a diagram) is thing called my pancreas. My pancreas is supposed to make these things called enzymes which digest the fat in my food and help it work properly, Mum says, only it doesn’t so I have to take the creons which have the enzymes in them.

Mummy has to work out how many creons I have to take by seeing how much fat is in my meals. If I have a Big Mac and chips I have to take about five. I don’t need to take one if I have an apple because apples don’t have any fat. When Mummy makes my packed lunch for school she puts a note in to tell the teacher how many I have to have today. I have to learn to start swallowing the whole capsule soon. Mummy usually opens it and sprinkles the little tiny balls onto some Soya pudding for me and I swallow that before eating the rest of my dinner.

If I don’t take my creons I will get tummy ache and runny poo which smells very, very bad. Mummy was glad when I was out of nappies. Sometimes, she said, she felt like putting a peg on her nose!

Sometimes the other children tease me at school because I am quite skinny and small. I get tired a lot and can’t concentrate very well. Or maybe it’s because I have ginger hair.

I get tired when I have a cough. I get coughs quite a lot. That’s why I have to have physiotherapy. Because of the Cystic fibrosis my lungs get filled up with some sticky old stuff and Mummy has to lay me on my beanbag and bang my chest and back for about fifteen minutes in the morning and before bedtime. She says that when I am a little bit older I will learn some other things to do for myself to help my lungs. Exercising is very good. This is great as I like jumping on my trampoline and running and climbing. When I am bigger I will play football and go to the swimming pool lots on my own. Maybe I will play for Arsenal one day.

I have to go to the hospital sometimes to something called a clinic. The nurses make me stand on some scales to see if I have got heavier since last time and I stand by the wall chart and the see if I have got taller. I don’t like it when they put the tickly stick down my throat and scrape some spit off. Mummy says it’s to see if I have bugs. If I do then I have to take anti biotics. This is some medicine which is yellow and it doesn’t taste too bad. We have to keep it in the fridge.

The best thing about cystic fibrosis is that I get to eat lots of sausages, burgers and icing buns. I need lots of fatty food and chocolate for energy. I can have salt on my chips too.

Oh yes, I have to have salt because that’s another thing my body doesn’t do properly and I lose too much salt in my sweat. You can taste my sweat and it tastes salty. In the summer I sometimes have to have salty water added to my food. By the way, William’s pancreas works properly but he is special too because he wears glasses.


Author Explanation: My grandson is nearly five and was diagnosed with CF at two weeks old after undergoing two bowel operations. He had an ileostomey for a blocked bowel and for nearly three months we had to change the ileostomy bag instead of changing a nappy. My daughter and I took turns going up to London and staying with him at the hospital. The op was reversed when he was stable on his creons and feeding. At three months old my daughter was allowed to take him home from the very excellent Brompton hospital in London. He is a very lively and imaginative little boy and makes no fuss about his meds and his physio. He loves school and is obsessed with Darth Vader and Daleks. Last week's clinic went very well and they were very pleased with his progress.