Tuesday, 26 February 2013

Working with (around) a CF Appetite (or lack thereof)

A continual theme I hear parents of a child with CF say is "my child won't eat" or "they don't like it", it's tempting to abandon whatever the quest was or resort to undesirable food choices, i.e. hot chips. Partically out of guilt, feeling sorry for ones suffering child, and also parental exhaustion. I hold no judgement towards others, it's a really tough challenge, no doubt about it. Sometime you have to pick your battles, it's all trial and error. In this post I would like to give you an insight to a child's experience in hindsight, things I have observed only in retrospect with my now adult mind can only comprehend certain contributors to this 'no appitite' factor. Perhaps a little encouragement to persevere...

"Patience is bitter, but the fruit is sweet" ~ Jean-Jaques Rousseau ~

I know what it feels like to have sub zero appetite, I mean 'nada'! The time in my 20's when I was hospitalised for 6 weeks due to a rib fracture I had to be on loads of medications; IV's, enzymes, fungus pills, acid reflux tabs, pain killers, oral antibiotics, nebbs, nausea tabs. I mean it makes you totally drugged up in feeling. I know many others have diabetes medications, over night feeds, plus other meds. no wonder I can only imagine what the pancreas, spleen, stomach, liver and kidneys are having to process. It would be interesting g if a 'normal' person could eat after that, let alone a person with impaired digestion! Coupled with excessive mucus and stomach aches after eating. It's a recipe for: "I'm NOT HUNGRY!".

The vicious cycle needs to be interrupted some how, that's the difficult part. As a child when I had a healthy lifestyle, active, and healthy foods, I had a HUGE appetite. My sister still remembers me going back for seconds. When I broke this healthy living pattern I got sick and lost my appetite. I believe this is the key to encouraging appetite. Lot's of physical outdoor activities. I was not allowed to watch TV much, maybe once a week if I'm lucky I was allowed to watch an old classic, 'Laurel and Hardy', Jerry Lewis, musicals, Shirley Temple movies. Never on a daily basis, our TV was packed away in a cupboard to prevent casual watching. I read loads of books this way too! The sedentary lifestyle TV and computer games are breeding are dangerous lifestyle, particularly to people with chronic illness. Just look at the obesity problem, multimedia is contributing to this on a massive (pardon the pun!) scale. Of course children now days may say "it's boring", that's also a product of entertainment, it makes life seem dull. I now minimise it for my boys too. I want them to have a healthy, thoughtful, creative, intelligent, upbringing. Principal axis, determining their happiness and changing their future. Don't get me wrong, I love a good movie!! I just believe they should be kept in their rightful place. A great way to objectively judge it for yourself is to think if by watching/playing this certain show/computer game is preventing my child outdoor physical activity, is that a good time to be doing it? Maybe not. Outdoor physical activity promotes a healthy appetite.

My early childhood heroine: Nadia Comăneci 

Food (you know I had to mention it!) what I eat it critical for my appetite. Like multimedia, fast foods, high trans fatty, processed, highly flavoured food choices are addictive, so when you stop eating it you get withdraws, cravings, making a fresh start very difficult for some. If I eat trans fat, processed food regularly I loose my hunger rapidly, even still now I'm on Kalydeco. It clogs me up. I don't just mean that literally, but just takes my body so much more effort to function. When my intestines get loaded with hard to digest food, that's it. I get a very congested chest, my mucus levels go up in my system and my bathroom visits are no good, a combination that renders me feeling very poorly and looking more pale than I naturally am!! I get weak, no energy, don't want to do physical activities, just want to eat fast food because it's 'yummy', then I get sick, chest infections, you know the routine after that! I have over the years noticed that it's all connected, it's not separate issues. One effects the other. Even worse determine the lifestyle you lead. Constant increase medication, hospital stays etc. By making a concerted effort to avoid this cycle with nutrition and activity, I can attest to the fact it really does make a difference!!

Changing a child's routine is nothing short of traumatic in some cases (for parent and child!). The earlier you start them on a healthy way of living the better! For others who know their in for tantrums, food strikes and an emotionally stressful period, I do offer sympathy!! But like Super Nanny shows parents on her show, it takes time, perseverance and patience. Lot's of positive reward and reinforcements, sometimes a little tough love, but know it is possible to make a change for the better. I can tell you sometimes I hated (as kids dosome of the food that was served to me as a child, but I don't regret or resent being made to eat it. The opposite is true, I appreciate my mothers persistence, strength and courage to teach me the tools for life that I so depend on now. It was very very good for me. That's partly what motivated me to learn how to cook, to make it taste better!  Step by step.


Creating healthy hero's can be so inspiring for children. Mine was Romanian gymnast Nadia Comăneci and anyone who sang and danced! For our sons Robin hood, Knights and Jamie Oliver! Our boys enjoy to watching his cooking shows, and any other healthy hero's (though we don't call them that, they're just subtly esteemed). This healthy way of living is normal to our boys now, as it was for me.

Experimentation key, make food fun and an exciting adventure. My boys were reticent to curry, they went from Mango chicken (very mild) and now they ALL eat vindaloos!! (with lots of pickles and yogurt). Being a bit of a foodie myself , I collect recipe books. I love to pour through them, and our boys love reading them too, because I get so enthusiastic about different cuisines. We have a rule in our house: You must try everything at least once!! You know, it's fun, our boys almost have a competition who can eat the hottest/worst tasting things! Typical boys!! As a result they eat every cuisine I serve them, their favourite is Mexican, Indian, Sushi and of course English fare. It's taken effort and encouragement, but it pays off in the long run. Really important example to our boys that Mummy and Daddy eat healthy, I don't serve anything I wouldn't eat too... except sardines they relish them, not me though

Sebastian (aged 2) eating and loving Sushi I made for dinner (often)

If your having troubles trying to improve diets, adding new and healthy foods into your routines, don't loose heart!! Persevere and you be rewarded in the long run. It may no cure the lack of appetite completely, but hopefully improve it significantly and general well being. Even though children may no have a taste for something initially, with patience and persistence it's possible to develop a taste for good habits and improving the quality of life and the whole family's at the same time. xo


  1. Replies
    1. Your very welcome Fliermike, so glad you enjoyed it! :)