Joseph update, CF and Food anxiety

Joseph is doing a lot better “cough” wise after his RSV virus, he is still very snotty so is not totally over it but has definitely improved massively cough wise and is no longer on extra oral antibiotics.

Unfortunately his prolonged illness has caused some other issues that are difficult to deal with.

Joseph has always had a few issues with food, from when he was a tiny baby before the Cystic Fibrosis and pancreatic insufficiency Diagnosis where he would cry and cry for milk all the time, to as an older baby his gastroesophageal reflux disease which caused projectile vomiting, pain and ultimately a chest infection  where he was hospitalised for two weeks,  to now as a toddler where he will only eat a limited diet and suffers from issues to do with texture (as well as the fact he needs upwards of 2000 calories a day to maintain a good weight.)

We suspect that as a result of this virus, his gastroesophageal reflux disease and the prolonged period of being unwell, Joseph’s food anxiety has increased to where every mealtime is a battle.

During his virus he lost a lot of weight because he did not feel like eating and his oral antibiotics gave him a bad stomach. After finishing these meds we thought it would be easy to put weight back on him but this is not turning out to be very easy.

Joseph always used to gag on “new” foods or food with a wet/slimy consistency (i.e anything in a sauce, pasta, rice, ham, certain meats etc etc) but now he has started to gag at most meal times with all food, even “safe” foods that he used to enjoy such as chocolate, cakes, toast and chips.

He now tests all food with his tongue first, asks for us to chop his meals up into tiny pieces and can take up to an hour to eat a small portion of his once favourite foods.

This is frustrating, but has also become worrying as he now not only violently gags on food but vomits during meal times (and not just a little bit…) and also has vomited at night in his bed.

After speaking to his dietician and consultant they believe  it is a physical problem with reflux  which is resulting in a psychological one and that his prolonged period of feeling very unwell plussed with burning pain when eating has played into his already existing issues with food and is an expression of anxiety on Joseph’s part.

The pain he experiences through reflux is causing him to fear eating, and has translated into fear and anxiety around all food.

To help us with this Joseph’s reflux his medication is being increased and he will now have to have gaviscon sachets in his milk again. Once the physical problem is solved we can then work on building up his confidence with food again and this will hopefully encourage him to put weight back on and have a better relationship with food.

If the increase in his reflux medication does not work then it is possible he will have to go on a special medication that will empty his stomach quicker to prevent reflux but they are hopeful we can conquer it with this current course of attack.

In the meantime we need to be as encouraging and calm during meal times with Joe as possible and allow him to eat foods he feels confident with and foods that are soothing.

The dietician said it is possible that he will always struggle with food or it could be that he grows out of it in time. We just have no control over the future and all we can do is face it day by day.

Luckily Joseph was a very good weight before the virus so his current weight loss  is not critical, as his dietician says he has enough in reserve to hopefully bounce back without having to implement a special feeding programme.

This is just another challenge that we will have to face as a family but we will get through it! Looks like it’s ice cream and milk for christmas dinner!


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