Cystic Fibrosis, Food

Update on Joe: cystic fibrosis, Gerd and dysphagia and Food anxiety

Hi Everyone and happy New Year! Hope you have all had a great festive period and are fresh and ready for a new year! (she says with a strained smile and twitching eye!)

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I shall have to do a post on our christmas shenanigans at some point but I am yet to have gone through all the photos etc, including the photos taken by Joe himself on his snazzy new camera from Santa! (i.e Uncle Rich and Auntie Sarah!) Those will definitely have to be sifted through as there are many unsavoury shots of various family members groins and random pieces of furniture….

Anyway, just thought as we had been to hospital this morning for Joe’s bi monthly clinic I’d update you all on where we are at. Also because I can’t seem to concentrate on anything else now other than the findings of his hospital appointment so I may as well get it all out of my system with a blog.

In terms of Joe’s lungs everything is going well, he seems to have kicked the RSV virus to the curb, and he is now just normal levels of snotty and coughing as opposed to panic station, blood vessel bursting levels of coughing. Hooray!

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In terms of eating things are not going quite so great. Joe’s omeprazole dosage has increased and he has gaviscon in his milk, this seems to have combatted a lot of the GERD issues (gastroesophageal reflux  disease) in that he is no longer vomiting up all meals (that’s a relief!) and can actually eat some solid foods without gagging.

That’s about it for progress in that area. Despite our efforts over christmas he has only put on a few grams in weight. This isn’t too much of a concern at the moment as he is still in healthy ranges in terms of BMI etc so we have a little wiggle room in that area. He still has a range of problems around food and eating and NO it is not because we are “too soft” or that he is just a “picky eater”. This is thankfully being recognised by the medical team as a real issue and the majority of our hospital visit this morning was in discussion of Joe’s eating problems and how we are going to try and help him with these issues.

In case you don’t know about Joe’s eating problems here is a little synopsis:

  • Joe is pancreatic insufficient so needs pancreatic enzyme replacement (creon) so that he can digest fats, protein, carbs, vitamins and minerals from food.  The creon is like a wonder drug but cannot fully replicate a functioning pancreas so he also has to have vitamin and mineral supplements and a high fat, high calorie, high salt diet to maintain a decent weight and needs to eat on average 2000-2500  calories a day to maintain weight as opposed to other toddlers who need around 1000-1500 per day. (This isn’t the same for all toddlers with CF, each person has their own recommended level of calorie and creon intake )
  • Joe has gastroesophageal reflux disease, he has had this since birth where we had a very long period of pain while feeding, coughing and milk projectile vomiting as a baby resulting in a lung infection and a 2 week hospital stay on IV’s.  This continued pain experienced by GERD as he has gotten older has caused him to become cautious of a large variety of foods, since the age of around one Joe was very selective in his diet and his foods were mainly brown although he had some variety and never showed distress at meal times. Since the age of two, and particularly since his recent illness Joseph began to not tolerate any solid foods and would often vomit up meals and gag on food at all mealtimes. (dysphagia)
  • He gets very distressed at nursery meal times and will not eat or drink hardly anything at nursery, so much so that the mere mention of lunch when at nursery sends him into a meltdown.
  • Since starting an increased dose of omeprazole he can now tolerate solids but will only eat a very limited variety of foods mainly  bread, chocolate, cake, crisps, milk and yoghurt with the odd piece of fruit thrown in on occasion. He will sometimes tolerate chips, chicken nuggets and sausage. This is where people get the notion that he is a “picky eater” but if they had been there on what we now call POTATO GATE where we had an hour long standoff over a small piece of roast potato on a fork, or if they had seen him gagging and vomiting up all foods- even chocolate and cakes- then maybe they’d understand it’s not just a toddler being stubborn.
  • A lot of the food he eats are bland, brown, and don’t cause reflux.
  • He drinks immense amounts of squash- this is because he prefers to fill up on liquid so he doesn’t have to risk the perceived pain of eating solids.
  • Joe has some weird rituals around food where he will smell each mouthful, examine it closely and repetitively touch it with his tongue to ensure it is “safe” to eat- this includes his safe foods. He likes to have his food cut into small pieces and if there is any textural difference i.e a chip being more soggy than the others or a nugget having too much sauce on he won’t eat it, and likely won’t eat the rest of his meal.
  • New foods are not tolerated. They are approached with fear, anxiety and extreme caution like unexploded land mines. Who knew pasta was so terrifying and repulsive? But when you have food anxiety this is what life is like- every meal time is a war zone with a lot of negotiating.

Any way, our action plan given to us by the consultant is to try a hard line approach for four weeks, where we do the traditional “if you don’t eat this you’re not having anything else” and particularly if he doesn’t eat at nursery mealtimes we can’t give him an alternative at home. (we have tried this before but not for an extended period so who knows it may work?) and he is to reduce his juicy juicy consumption (squash) as he is currently drinking at least twice the recommended fluid intake a day- this in theory should make him hungrier. We are also having extra support from the health visitor. It is going to be a long, hard four weeks- we have been warned.

(We also do sensory play, reward charts, special plates with separate sections, cooking with him etc etc so we will continue to do this)

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Joe doing sensory play- “testing” fruit with his tongue

After 4 weeks if he is still not eating at nursery then he will be referred to a speech and language therapist to try and help resolve some of his issues around food as it may be a sensory aversion or something else we haven’t thought of. He may also need to see a psychologist if problems continue to persist.

So there you go! I will keep you updated on our progress!

If anyone out there has similar problems with there CF kid or non CF kids then please let me know if you have any tips and advice!

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1 thought on “Update on Joe: cystic fibrosis, Gerd and dysphagia and Food anxiety”

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