Cystic Fibrosis, Family, Food

food food terrifying food #foodaversions #cysticfibrosis #GORD

Food, food, terrifying food

Food is a touchy subject around here.

This is a difficult post to write. But I think it needs to be written as there are other parents going through similar things with there children and they may find value in this post.

As a parent, when you say your child has problems with eating, every body has an opinion.

And it’s hard not to get defensive about it.

Almost every parent thinks their child is a “fussy eater” at some stage in the journey because they wont eat peas, or because for a few weeks they ate jam sandwiches, but this week they won’t eat jam sandwiches.

And it IS hard for ALL parents. Feeding your child is an emotional, and sometimes distressing thing.

There is a big difference between a child being an occasional fussy eater, and a child who seriously struggles with all aspects of eating, from touching the food, to swallowing it, to digesting it to pooping it out at the end.

Joe is one of the latter children. By no means is he the worst out there, and thank goodness for that! But things have gotten pretty bad around here.

Almost every meal is a battle ground or a feat of endurance. Not a day goes by where Joe does not have some small (or more often big) issue with food.

Part of this comes with Cystic Fibrosis of course. Joe is pancreatic insufficient so needs to take enzymes with all food in order for him to digest it, plus he struggles to garner much vitamins and minerals from his food so needs to take those artificially.

Due to his pancreatic insufficiency it is also important for Joe to eat a lot of calories. He needs plenty of high fat and salty food to keep him growing, to keep his lungs healthy and to give him enough energy to fight through chest infections and the like.

“How wonderful to HAVE to eat high fat and salty foods!” I hear you gasp. And yes, that would be pretty good if we could actually get him to eat anything.

Joe also has gastroesophageal reflux disease, which means he gets acid reflux all the time and often vomits either after food, or at night. To combat this he has several reflux medications. Despite this he still vomits up undigested food on occasion several hours after eating.

Joe also gets very blocked up bowels. He has been to hospital recently with a torn back passage, he often gets a big swollen stomach from blockages in his bowel and has serious constipation, and therefore he has stool softeners and laxatives everyday to help him have a bowel movement.

Taking medicine every time he eats, vomiting and getting uncomfortable and painful acid reflux and being bloated and unable to poop does not make one very hungry.

To add to this combination of negativity around food, Joe also has an aversion to textures. This translates from play and the class room to meal times. He doesn’t like to get his hands dirty, he doesn’t like water on his face or to touch wet or particularly “slimy” textures and the majority of the food he eats is brown and dry. He will eat some “slimy” foods though, for example he’ll eat a yoghurt (without bits) or ice-cream (no sprinkles) or bbq sauce (separate to all other food stuff please) so its more the mixture of two textures together that he finds disturbing than the wet texture itself.

All of these factors combined with the typical fussiness and stubbornness of a three/four year old does not make eating a very enjoyable experience for anyone involved.

It is now nearly three years since Joe started showing issues with food and we are just getting some help from a child psychologist.

When your child has an illness or difficulty of some kind and you as a parent are trying to get help for it, that is when you find out how important and how difficult it is to be an advocate for your child.

It took two years of asking, tantrums, weight loss, vomiting, bloody stools, screaming ad dabs, OCD behaviour, regurgitating, starving, frustration and tears for the medical professionals to admit that there might be a bit of a problem. In fact his team at hospital have said his eating issues are too “complex” for them to deal with alone, despite him have a bi-monthly clinic with a dietician.

We are still at the beginning of a long and arduous journey to get our child to eat semi normally, and we’ve been warned that it may not work anyway.

But we are here. We are trying and we are doing anything we can to make the process of eating a manageable experience for our child. If we could make it enjoyable for him that would be a mega bonus. A mega bonus that seems as likely right now as us sprouting wings and flying off to Barbados. But we’ve all gotta dream haven’t we!?

So yes, we are being helped, as a family, by a child psychologist to see if she can help us, help Joe to be comfortable around food again.

She has observed him at home and at nursery, she’s spoken to him in person and has meetings with me on a regular basis to try and work through these issues. It’s been a few months now and we are no better off, but there have been a few glimmers of hope.

For example Joe ate pasta (plain, without sauce) for a few days and even ate a few small pieces of carrot with out vomiting. He’s stopped eating those things again now but he did eat them for a few days so you know, progress!

When he ate pasta I nearly vomited with excitement myself! But alas it has not stuck.

But we will persevere!

Here is a list of the things we are doing currently (some of them seem obvious, some not so) to help Joe with food, as suggested by the psychologist:

(These ideas might help you too if you are a parent who’s child struggles to eat, let me know if you’ve tried anything that works! )

  1. ROUTINE- eat meals at similar times and at the same place every meal time if possible, for this it means at the dining room table every meal time.

  2. KEEP A FOOD DIARY- we are to write down the times, place, what he eats, how much of it he eats and any other details down for every meal to see if we can find a pattern to his problem eating. So far we have found that breakfast is the best meal and the day gradually gets worse where food is concerned.

  3. DON’T GIVE HIM TOO MUCH CHOICE- so pretty much, don’t offer a choice, or just give two firm choices, using pictures if possible.

  4. DON’T OFFER A SUBSTITUTE- if he doesn’t eat what you offer, don’t make him an alternative.

  5. EAT TOGETHER- if Joe is eating his meal we need to be eating at the same time, even if its not our main meal, it could just be a bread roll or a few crudités.

  6. SMALL PORTIONS- Don’t over face him with food, small portions regularly are better than large portions three times a day.

  7. HYPERBOLISE- we have got to really ham it up in the “This is Yummy” stakes. That piece of toast you’re eating? “Oh my gosh, this is delicious!! It’s so buttery and toasty! I love toast! Yummy scrummy in my tummy! MMMMMMMmmmmmmm! TOAST OF DREAMS!”

  8. ENCOURAGE TO FEED HIMSELF- if you are feeding your child and they are of an age and ability where they can feed themselves, don’t. And really don’t force food into their mouths if they don’t want it.

  9. BUILD UP ON SIMILAR TYPES OF FOOD- If he will eat chips, try roast potatoes. Then boiled. Then mashed…you get the idea. (This is not going well for us being as Joe will only eat for example one brand of chicken nugget. To Joe not all nuggets are created equal.)

  10. KEEP YOUR COOL- this is something that Rob in particular finds very difficult. And too right because it is bloody frustrating and disheartening. But if he doesn’t eat his meal. Don’t negatively comment, don’t get mad, just take the plate away. And if he does something positive PRAISE PRAISE PRAISE!!!

  11. NO TV- we used to let Joe watch TV while he ate because he would eat more while distracted. He doesn’t watch TV while eating now and he eats less and gets bored of eating even more quickly, but we’re sticking with it.

  12. 30 MINUTES RULE- if it’s not eaten in 30 minutes it gets taken away. Joe would sometimes sit for an hour and a half eating a meal, and if you tried to take it away he’d get very distressed. But we are managing to keep meal times to 30 minutes now even though that often means he doesn’t finish.

  13. THERAPLAY- this is basically activities that are building up Joe’s comfort level with food, allowing him to play with food at designated none meal times will in theory get him more comfortable with textures and less anxious around new foods.

  14. DO NOT BRIBE- do not offer rewards for small bites. We had tried this many times, for example “if you eat one bite of carrot you get a fruit pastel.” We are no longer allowed to do that. But instead we can…

  15. USE A REWARD CHART- we have a digger chart where Joe gets a wheel every time he eats his tea and every time he tries a new food. He has 14 opportunities a week and he needs 7 wheels in a weeks to get a prize. This worked….one week. Apart from that one week, which was the first week, Joe has failed to get enough wheels on his chart again to earn a prize.

So that’s where we are up to at the moment. The majority of these things we’ve tried before, but this time with the support of a psychologist we are more likely to persevere for longer periods at a time.

So far we have seen little to no improvement, but this isn’t something that will be solved over night.

If we manage to find a technique in time that reaps rewards we will be sure to share it with you!

Thanks for reading!


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