Navigating nutrition alongside your young child with CF can be very daunting, especially through transition phases. We chatted to Liezl Compion about a healthy parent approach to CF nutrition. Liezl lives in Still Bay and is a registered dietician and mom of three boys. Her youngest son, Christopher, has CF and is currently 8 years old.
1. Liezl, nutrition is such an important part of CF health and can often be a big challenge and stressor for parents with young children. What are some of the most important lessons you have learnt, as a mom and dietician, on creating a healthy family focus on good nutrition?
Just to give you a bit of background, Christopher is now 8 years old and he has always been underweight for his age and height, and therefore he has had overnight feeds via a MICKEY (tube in his stomach) to help with weight gain since the age of 5. So, I have had my fair share of worrying about nutrition and getting in enough calories to help him gain weight.
What I have learnt is that I can try my best, but I should do my best to also not be hard on myself if things don’t go the way I want it to go. I can offer the right foods but I can’t force them. Eating should be enjoyable and it is just as important to focus on a healthy food environment than it is on just getting in calories. Basically, the more I stress, the worse it normally goes. So, relax and take a deep breath and offer healthy yummy high calorie foods and snacks. If your child doesn’t feel like a snack they will most probably catch up with the next meal. You can also offer a glass of milk, a small smoothie or a nutritional supplement as a snack. Include a variety of food as much as possible and try to avoid overfeeding on just one food group because that’s what your child prefers. Remember, if they only eat bread and drink lots of milk there won’t be any desire or hunger for other foods. Allow treats like chocolate or biscuit after meals or when you go out for a date/special occasion, not instead of a meal. Also make sure you involve your children in the cooking process and allow them to experiment with different foods. This will encourage positive meal times and happy memories around food.
2. The weaning phase can be specifically difficult to ensure that your baby with CF is getting enough nutrients, and now from solids. What are some good go-to foods you can recommend for this phase?
I know how hard this phase can be as children can often be fussy and we as moms feel they are not eating enough, especially when they spit out or refuse food or start to eat by themselves. Here are a few ideas
Offering as much of a variety as possible is crucial to develop their taste buds for all kinds of tastes, not just sweet foods.
Rice cereals is a good starter as weaning food as it is non allergenic and either breast or formula milk can be added to it.
You can also start with veggies, especially starchy vegetables, fruit, pureed meat or pureed oats. The order in which foods are introduced is not as important as introducing a variety.
All kinds of veggies e.g., sweet potato and spinach or butternut and broccoli or carrot and potato. You can add some salted butter, olive oil or coconut oil and a little salt for taste.
Fruit like mashed banana, peach, cooked apple or pear are always a winner. Add some unflavoured coconut oil for extra calories and double cream yoghurt to make it a more substantial meal.
Mashed avocado mixed with salt. This can also be added to mashed fruit to make it slightly sweeter.
Oats, softly cooked or blended after cooking, mixed with full cream yoghurt and fruit is a delicious breakfast.
Add protein like softly cooked chicken or soft lamb to veggies and then mashed lentils, butter beans and chickpeas soon after that.
Mashed potato, squash, butternut or sweet potato with added olive oil, butter or coconut oil is normally well tolerated.
Try to avoid sweetened yoghurts and rather sweeten double cream yoghurt with mashed fruit.
Boiled mashed egg or scrambled egg with added oil or butter is an ideal meal. Egg can be introduced from around 7 months.
Just keep an eye out for any allergies as some children cannot tolerate egg and dairy products at an early age and it will have to be introduced later.
3. Even young children without CF are often picky eaters. What would your advice be to a CF parent on boosting nutrients and fats when their young child is fixed on only eating a limited variety food?
We all know it is important to add healthy fats to our diet. In CF fats are often not well absorbed and important vitamins are stored in these fats like Vit A, D, E and K. Healthy fats are very important for most of our body’s functions and preventing the cells from getting inflamed and becoming sick. Healthy fats are a wonderful source of nutrients for the brain as well. Fat is also very high in calories and is the best way to add extra calories to a meal. Always remember to add extra Creon for the fat that you add so that it will be well absorbed.
Sneak in fats by adding it to their favourite meal. Good sources of fat are MCT oil, coconut oil, olive oil, flaxseed oil, salted butter, avocado, nut butters, olives, cream, cream cheese and mascarpone. MCT oil and coconut oil can be added to any liquid e.g., porridge, smoothie, mashed potato, stew or soup without affecting the taste. Salted butter is tasty to add to veggies, mashed potato or sweet potato, added to crackers, bread or to porridge. Peanut or nut butters can be added to smoothies, porridge, or thickly spread on bread or crackers. Make sure you use good quality meat with some fat e.g., lamb, chicken with skin, steak with fat and bacon rather than lean cuts. Full cream milk and yoghurts, cream cheese and full cream cheese are also good ways of getting in healthy fats, protein and calcium.
If your child refuse to eat fruit and veg try serving it raw e.g., raw carrots, cucumber, peppers, frozen peas and corn and cut up the fruit and veg into bite-size pieces. Always make sure you add some fruit or veg with every meal or as a snack. Even a few pieces will benefit your child. For example, blueberries are very high in polyphenols that fights infections and you only need a few a day. Fruit can also be cooked and mashed and added to dishes like stews and porridge. Smoothies are a great way to incorporate fruit and even vegetables like carrots, baby spinach leaves and avocado in the diet. If your child refuse to eat meat, offer other proteins like eggs, beans, biltong, droëwors, dairy products or lentils hidden in stew, sauces or spaghetti bolognaise sauce. Never neglect to give them any protein as it is crucial for the development of all parts of the body especially the brain and muscles.
Make sure you include starch with at least every main meal. This can include potatoes, oven chips, sweet potato, rice, corn on the cob, cereals like Pronutro, Futurelife, Weetbix, oats, Tasty wheat, mieliepap (maize), as well as wholewheat or brown bread, Provitas or wraps. All these are good bases to add fat like cream cheese, butter or nut butter. Try to avoid high sugar cereal as a rule.
Good snacks that fussy eaters normally like include popcorn with butter and salt, salted crisps, Oaties, cheese, nuts, crackers and cheese, peanuts and raisins, dried fruit, biltong, droëwors, fruit, yoghurts. When kids are eating very limited sources or are underweight you can include high calorie supplement drinks e.g. Pediasure and Nutrini(1-10 yrs) or Infatrini(up to 1 yr) daily. It is good to speak to a dietitian regarding the amount your child needs to meet their requirements. It is best to offer these away from meal times (1-2 hours), at bedtime or as a snack as it can reduce their appetite for food.
4. Finding snacks for toddlers with CF that actually add extra fat and salt, but are still relatively healthy can be tricky. What has your experience been with good go-to snacks that also tick the CF-boxes?
Cheese, salted nuts, peanut butter on cracker bread/cream crackers/salty cracks, olives, fruit and full cream yoghurt, biltong, droëwors, popcorn with added salt and butter, small smoothie, nutritional supplement like Pediasure/Nutrini, salted crisps, peanuts and raisins, avo on toast, marmite and cheese or cream cheese on crackers, raw veggies dipped in hummus or guacamole.
5. Once our toddlers are at an age where they can understand more about their condition, it is important to also talk to them about their unique nutrition needs, especially compared to friends or siblings. What would your advice be on the most important things to communicate in this conversation?
Here are a few ideas on phrases you can use
– Your body is working harder and using up energy faster than your friends.
Your body needs more petrol to run as the petrol runs out faster. This makes you special and you are lucky that you can eat more than your friends.
Our food needs enzymes to be digested and absorbed into your blood. Your pancreas can’t get all the enzymes to your gut so therefore you take Creon.
It is also important to help them understand the importance of eating foods that nourish and keep the body healthy rather than just fill the tummy. Help them to understand:
That food is just as important as medicine to keep our bodies healthy.
That healthy food is tasty.
That you should listen to your body and nourish it accordingly. Sometimes you feel like sweets but actually you are just very hungry or you feel irritated, but it’s because you are hungry.
Good fats are important to fight inflammation and feed the cells.
How to recognise when you are thirsty and to drink enough fluid.
6. Are there any specific resources, books or websites that you have found helpful for recipes, etc on the CF-parent journey?
Here are a few links with helpful tips and recipes:
- Chef4CF resources and recipes: https://www.chef4cf.com/
- Free downloadable CF Recipe Booklet: https://www.cff.org/This-Eating-Stuff-is-Hard-Work-Recipe-Book.pdf
- Some kid-friendly recipes – Nemours KidHealth: https://kidshealth.org/en/parents/about-cf-recipes.html
- Great resources in general, but specifically CF Kitchen recipes: https://www.everyday-cf.com/cf-kitchen
- Cystic Fibrosis Australia Booklets on Nutrition, Snacks and age appropriate meals : https://www.cysticfibrosis.org.au/about-cf/facts,-figures-and-publications#Nutrition
- Royal Brompton & Harefield NHS Foundation Trust: https://www.rbht.nhs.uk/our-services/paediatrics/information-for-parents/childrens-diet/nutrition-for-children-cf
- American Cystic Fibrosis Association Nutrition tips: https://www.cff.org/Life-With-CF/Daily-Life/Fitness-and-Nutrition/Nutrition/Good-Nutrition-for-Kids-With-CF/
* Please note that the aim of this article is to provide general advice and should in NO WAY replace the counsel of your child’s pediatrician and dietician. It is very important to adhere to the counsel of your child’s pediatrician and dietician in managing the unique needs of your child with regards to Cystic Fibrosis.
Written and compiled by Grethe Roets.
Grethe is a freelance writer from Morningside, Johannesburg. Her son, Ruach, was diagnosed
with CF at 7 months.