A quick summary of CF and food: People with CF can be pancreatic insufficient (like Pinkie), which means their bodies don’t absorb fat (or the nutrients attached to that fat). Therefore they take Creon, a medicine that does the job their bodies don’t. Now, obviously a medicine doing the job isn’t as effective as the body doing it, so children with CF tend to be slim even though they eat loads. This sounds like a blessing, but trust me it isn’t, it’s no less tough than being on a strict diet. Trying to get a child who isn’t hungry to eat is hard, a battle we tackle up to five times a day. Lung function and body weight are linked so the better the weight, the better the lungs, or so the theory goes. Pinkie currently takes about 36 capsules a day, we work on the ratio of 3 grams of fat to 1 capsule.
Back to Pinkie vs Winter. I have decided that this year we are going to eat our way through to spring, the opposite of hibernation you could say. At least once a week I am going to bring Pinkie home from school at lunchtime for extra physio and a big cooked meal, just on the rare days she doesn’t like the school dinner, and return her in time for the afternoon session.
Over the years I have discovered what Pinkie makes, Pinkie tends to eat. She has been to cooking club at school, cooking school on Saturday mornings, grown her own veg (Nana over sees this as I am black fingered), baked millions of sponge cakes, made pasta, cereal bars and watched every cooking programme going and has developed quite a culinary skill. This winter, every Saturday Pinkie is making a meal/snack of her choosing for the whole family to enjoy. This week, I have been informed, we will be lunching on lamb hotpot, I’m quite excited.
Pinkie’s diet consists of quite a high fat/sugar content, some of which would have Jamie Oliver’s toes curling, but needs must and all that. I have done as best I can to educate Pinkie and Blue about the food they eat; what’s good for you, and to consider where the food comes from. Pinkie is the only child I have ever met that salivates in the butchers, she appreciates the effort that goes into rearing good quality meat and is a dab hand at homemade burgers. Luckily for us, Blue is a fussy eater so he isn’t tempted by most of the high fat stuff Pinkie eats and has remained his naturally proportioned self.
When Pinkie was first diagnosed (at 40 hours old) and I had learned about the daily antibiotics my first instinct was to worry about her teeth. I knew too many meds can discolour them. Then when I learned about the diet and the sugar I was once again concerned. Then someone rather blunt pointed out that no one has ever died of bad teeth. Fair point, they could have been sugar coated it for me though (get it?!!).
Today we had an MOT at the hospital and it went really, really well. Pinkie’s weight is on the highest centile it’s ever been and her chest is clear. Her lung function is good and hopefully her cough swab will come back negative. As an extra precaution this winter we are upping the use of her Asthma pump and squeezing in extra physio wherever we can.
I have high hopes, we are feeling ready to beat winter this year. I’ll let you know in spring who comes out top in the battle of…
…Pinkie vs Winter.