Not enough weight gain - emptying of the stomach

Question

Dear expert team,

my son (4 years 11 months, CF, Delta F508 homozygous) does not gain weight properly since birth (2.500g, 4 weeks early). At the moment he weighs 15 kg at a height of 100cm.
1) Emptying of the stomach:
It is striking (he vomits occasionally due to strong cough) that even after 4 hours he vomits nearly complete meals (which are weighed by us) including enzymes.
Is a problem in empyting the stomach frequent in CF? What could be the causes and how could they be corrected? At the age of 6 months there has been an endoscopy of the stomach once (without a pathological finding), as well as a pH-monitoring (borderline, omeprazole did not improve the situation).
2) lacking weight gain:
due to an eating disorder, he nearly only eats baby puree from the bottle, that means both food (incl. calsahke) and enzyme dosage are indentical. It is now striking that the stool is very different: from obstipation (up to once a week) to diarrhea/fatty stools (even with maximal enzyme dosage) you find everything. I have the suspicion that the enzymes do not work properly, as they arrive at the wrong moment in the bowel. What can you do here? Or are there any other possible reasons?
Blood-sugar tests show an impaired glucose tolerance (up to 180mg/dl), an oral glucose tolerance test is not practicable due to the eating disorder.
Many thanks!

Answer

Hello,

you are mentioning three fields of problems, which causes your concern for your child.
1. Lacking weight gain:
You are mentioning that your child weighs 15 kg at a height of 100cm. With this numbers your child's height is about 3 cm below the 3rd age percentile while the weight is nearly on the 3rd age percentile. Your child is therefore at the moment not too light for his height but of normal weight, but the growth is at the lowest normal region and it should be clarified, why your son is growing so slowly. Here, for example, investigation of hormones like thyroidal hormones would be necessary. Furthermore, a coeliac disease should be excluded as an accompanying disease. The latter can also cause an inappetancy and changing stools.
2. Delayed empyting of the stomach:
You mention that your son does sometimes after 4 hours vomit a nearly complete meal. This is for sure striking and pleads for a delayed emptying of the stomach. Such a delayed emptying of the stomach is seen in single cases in CF. In order to get a clearer picture about this phenomenon, one should either do another endoscopy of the upper intestinal tract or an investigation with contrast medium of the upper intestinal tract (upper gastro-intestinal passage). With the endoscopy, the question of a reflux disease can be clarified better while a functional disorder of the empyting of the stomach can be clarified better by an upper gastro-insteinal passage. In case there are no pathological findings here, one should try a careful therapy with domperidone drops.
3. You report an eating disorder of your child.
You describe the typical behaviour of a child, that did not learn at the right time the swallowing of solid parts of food or did not keep it. This learning process should happen if possible until the age of 8 or 9 months. In case children do only take finely mashed food in that time interval for many different reasons, it will be very difficult in the following time to get those children used to solid food. This aim could then often only be achieved with the help of an experienced eating therapist.
The whole problem that for sure is causing great worries to you can only be straightened out step by step and carefully. It should calm you that your son is not underweight inspite of all the problems. For an optimal judgement of the situation it would be very helpful to view the development of the heigth and weight of your child in the course of time on the basis of the percentile curves.
You should discuss with your doctors in charge if an accompanying psychological counselling woud be sensible, in order not to burden your child with sources of stress in this difficult situation.
We wish you much patience and luck in this difficult situation.

Yours sincerely,
Dr. H.-G. Posselt

09.03.2009