#1
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Hi

Does anyone have any experience of their child being on Creon supplements??

My son has a very complex medical history but in a nutshell part of this is that he has been tube fed since birth. He has also had prolonged periods of Total Parental Nutrition and has a history of feeding issues and gut problems including chronic loose stools. He has had abnormal endoscopys but the medics are baffled in the diagnosis and it has become an ongoing problem.

He was introduced to Creon about 18 months ago due to fat malabsorption / pancreatitis. Immediately after he gained an interest in food for the first time ever and began to eat small amounts. Still relying on overnight feeds but eating all the same Smile About 6 months ago he started to fall off the centiles again and considering he was now eating more than ever it left the drs even more baffled and so feeling it was the fat his creon increased. This made little difference and they were going to put it higher still but decided to do another endoscopy / colonoscopy.

These were performed 5 weeks ago with no further info found. They suggested stopping the Creon to see what happened. Well what happened is he stopped eating and hasnt eaten since! We have gone a complete full circle and I am tearing my hair out. I am just awaiting a call back but I think the Creon is the answer. However, whilst he is not eating his stools have normalised which also proves the food causes the loose stools so it looks like we can't have the best of both worlds.

My question is, if your child has taken Creon and stopped have they stopped eating?? Have you had experience of the loose stools when eating etc? They say the enteral feed is unlikey to cause symptoms of fat malabsoprtion due to it being completely elemental and predigested.

Any advice welcome I am frazzled lol x
#2
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I don't have any advice I'm afraid but did your son get given his enzymes down his tube?

They think my 14wk old daughter may have pancreatic insufficiency due to her symptoms and the results of a fecal elastase test (waiting for confirmation from 2nd results to come back) but they have said as she is tube fed she can't have the enzymes down her jej tube in case it blocks it but she can't have it down her NG tube due to stomach acid which would destroy the enzymes so they have started her on a trial of treatment with Pepti Junior milk today for the next couple of weeks to see if it makes a difference as ot's gt fats in it that don't require pancreatic enzymes to break down the fats or something but I would much rather she'd continue on breast milk and them give her enzymes but I'm being told enzymes aren't possible for Tubie children :/
#3
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hi there, yes Luke has pepti junior down his peg and it seems whilst just on that he has less symptoms. He has his creon sprinkled onto a spoonful of yoghurt which was sold to him as magic dust and somehow he accepts it Smile I was also told it couldn't go down the tube so we were extremely lucky he accepted it as he is soooooo funny about texture etc. It is easily disguised though and yoghurt is one food he enjoys

The hospital called back today and we have to go tomorrow to see his gastro consultant and they are going to think what to do. He may very well go back on it with the thought maybe his dose wasnt right for him previously still causing fat malabsorption. I feel stuck between a rock and a hard place because when he had the creon he ate better but as his malabsorption wasn't under control he was losing weight the more he ate and without the creon he doesn't eat a thing. Perhaps if his weight is steady tomorrow it may be apparant the enteral feed alone better suits his system.

Good luck with your daughter I hope you get a plan soon x


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