Cystic Fibrosis, Food

Joe’s hospital visit

Hey everyone!

Joe had his annual review with the team from Manchester today at hospital and all went AMAZINGLY well! As you may know Joe has always struggled with hospital visits in the past (you can see here a post about how to help your child if they are afraid of the doctors) and gets very distressed by anything slightly medical so imagine our shock and awe when the only time he cried during today’s visit was when it was time to leave!

Last year at this appointment he cried solidly for three hours. This time he happily got weighed and measured, he cheerfully said hello to all the team from Manchester and his usual team and asked them to read him stories and chatted away freely, he even had his chest listened to with a stethoscope and he SMILED through it! And best of all he happily gave a cough swab and even coughed on cue! There were cheers and stickers all round!

The great news is his chest is totally clear and he is continuing to put weight on although not at the speed he was previously- hopefully this is just due to him having a vomiting virus recently.

The only issue we have is with food. This is a big issue as weight gain and nutrition are so important for people with CF. He has developed what we suspect is a textural aversion to specific foods, specifically foods with a slimy or a bitty texture. Now Joe is at nursery he “eats” a cooked meal there twice a week but it is becoming an issue as he won’t eat any of the food they provide or if he does try it he gags on it and has started becoming distressed at meal times.

We have the same problem at home where he gags on food or becomes very distressed when we offer him something with an unusual texture.

Unfortunately we have been given conflicting advice from our CF team. The dietician has suggested not pushing him to try new foods as it is causing him to become distressed at meal times and may make him become fearful of eating. She has suggested taking a packed lunch to nursery that he can eat with the other kids without the pressure of eating something he’s not comfortable with. The dietician says she is going to ask the advice of other dietician colleagues so that we can work on his textural issues slowly without causing adverse stress and possible weight loss.

The Consultant said to persevere with eating the same meals as everyone else at nursery and thinks it is just him asserting control around food as toddlers often do. She has suggested that the other children have something small on their plate that Joe will eat so he feels included and it may encourage him to try the other food. I think she is under the impression that Joe rules the roost and therefore is asserting control with his food. But she also says children who had severe gastro intestinal reflux as babies (like Joe) can struggle with swallowing soft foods as it reminds them of throwing up and pain.

Does anyone have any experience or advice about this? Should I listen to the dietician or the consultant?

As for the usual picky eating advice I have tried and am still trying-

  • regular meal times
  • eating meals at the table as a family
  • introducing new foods slowly and the same food over and over (as it takes up to 17 tries of a food to get used to it apparently)
  • buying special plates that separate the food
  • letting him take food off my plate
  • getting him to help make the food (this resulted in a lovely pizza making session followed by a horrific session of him gagging on his pizza and getting very distressed)
  • sticker reward charts
  • ignoring negative behaviour and praising madly positive food behaviour
  • Taking away food and not replacing with an alternative (turns out he just won’t eat)
  • getting him to eat with his peers
  • using finger food, using utensils
  • bribery
  • taking away all distractions at meal times (no toys, no tv)
  • flash cards with food on
  • stories and tv shows about food and cooking for kids
  • chopping up food really small
  • hiding food in food that he likes

What else can I do???!!

Please let me know your thoughts.


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