Childhood Diseases

Posted by: Peta | 2010/02/22


Need advice - again!

Hi Dr
Me again - my 17 month old lb who has crycopharyngeal inco-ordination syndrome with laryngeal incompetence...anaphalyactic dairy allergy and he has a feeding peg.

The problem is this and i please need your advice...

He has been on a new " diet"  to ensure that he gets all the nutrients in that he needs. The problem is that he is not a great eater (orally) and i wanted the new diet to be able to supplment what i am not able to get into him orally. All bottles etc are given through the peg as well.

He has a mix of food as worked out by the dietician that i feed him through the peg, it works out to about 900ml of sloppy liquid a day plus 3 x 210ml bottles of similac alimentum plus another 300ml of any liquid. The problem is this - since starting this diet about 3-4 weeks ago, he has lost ALL interest in eating orally - all that i have managed to get down in the last 6 days is 1/2 teaspoon of soy custard. And before this i could at least get 4 teaspoons of something down per meal at least plus a fling or two between.

You can offer him any food under the sun, i spend my DAYS cooking things i think he might like and he just refuses everything that i try.

In addition to this, the amount of food the dieitican says i am meant to get into him in a day is just WAY too much - i only manage to get perhaps a 1/3 of that into him. He starts moaning, i think he may be too full as his tummy isnt as big since he had the anti reflux operation at 9 months.

What now? we are based in PE and we d ont have any paediatric dieticians here and my paed from here in PE doesnt seem to know which way next. Do i need to travel to CPT for another opinion? I have seen a paed dietician at Red X but am just not having much luck here...

At the moment he is 10.35kg and 76cm at 17 months. I had him up to 10,6kg at end of Dec but he now seems to be losing weight.

He is also sleeping very badly and is moaning and groaning in his sleep. I ahve had his throat and ears etc checked to see if there could be issues there but nothing.

I am honestly at my wits end now. I have no idea what to do next, what route to take or how to help him.

What do i do?

Also, one last question for you - At 9 months, at 6.9kg he had the feeding peg inserted and the anti reflux op done. Until that point, he didnt drink well at all but would eat like a little pig - purities, cereal etc. Two weeks after this op he suddenly developed issues with eating and i want to know is there anyway that this can be related? We even whent back to CPT to check the operation and he had another scope etc but all is normal. How does a child that is eating WELL all of a sudden stop????

Please help, i dont know what to do next.


Expert's Reply



This is very difficult for you. You have given an excellent description of your problem.There may be a very simple reason for your son refusing to take any food by mouth. The most likely reason is that the peg feeding is causing him to feel full, in fact he probably feels quite bloated with the special diet he is getting. His weight is reasonably good and is only slightly below the average for his age which is 10.7kg.It will help you to consult a paediatric gastroenterologist. I can highly recommend Dr Liz Goddard at the Red Cross Children's Hospital in Rondebosch, Cape Town Tel 021 5585111

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