Food and cystic fibrosis

Question

Hello,
my baby has cystic fibrosis, I start diversifying food and I wonder about what is best for her knowing that she is a small frame and that one seeks to make her gain as much weight as possible ... rather strong pressure from doctors .... her diet is supplemented at night by enteral nutrition to help growth ... what foods to choose? how much for a 7 month and a half and six kg ? How many meals a day are recommended, should we follow the advice given to other children? What are the specific needs related to her illness?
Thank you in advance.

Answer

Hello,
Your baby is most likely followed in a specialized CF center, and such personal information necessarily will be best delivered by the team who knows well the your child and the family context: physician, dietician, nurse coordinator ...

In very general terms: the number of meals must be 4 to 5 per day according to the child's appetite: morning, noon, afternoon snack and evening, knowing that if she is not hungry in the early morning because of the enteral nutrition she can have a snack around 10:00. Each meal must be fortified with fat to increase energy intake without increasing quantities. A little local trick: you can add in meals coconut cream that contains a lot of Medium Chain Triglycerides (MCTs) which are well absorbed in cystic fibrosis. The pancreatic enzymes that help digest fats, and also proteins, needs to be given before each meal and snack that contains fat, so the calories are absorbed.

Another important point is that salt intake should be increased for children and adults with cystic fibrosis. This contribution is achieved either with foods naturally high in sodium, or by adding salt to meals (dose to adapt with the help of the dietician) or through rehydradation solutions also used in the treatment of childhood diarrhea.

Below you will find links to documents and video (some in English) on the nutrition of children with cystic fibrosis.

Also ask your CF center if you can attend sessions of therapeutic education that will help in better understanding the needs of your child, to be more comfortable with managing daily life with cystic fibrosis. The objective is that food is a pleasure for her and for you.

With best wishes for your daughter to grow and flourish through all your love.

Dr. Sophie Ravilly and Ms. Gersende Gross (Paediatric dietician Marseille)

www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/HealthyEating/Healthy-Eating.pdf

www.cff.org/LivingWithCF/StayingHealthy/CFInfantCare (voir la 4e video)
www.cysticfibrosis.ca/fr/treatment/Nutrition.php

www.vaincrelamuco.org/e_upload/pdf/brochure_mieux_se_nourrir_fev2004.pdf

08.05.2012