Loss of appetite and refusal to drink

Question

Hello,
Could you explain us what are the different mechanisms behind the lack of appetite in a CF child? Is it always a sign of congestion or are there also digestive origins?
In the same vein, do you know why our children refuse to drink in hot weather?
Thank you in advance for your response.

Answer

Hello,
You’re actually asking two questions: one concerning the mechanism of loss of appetite, the other concerning the explanation of the refusal to drink.
Mechanism of loss of appetite:
Adequate food supply in quantity and quality and a good appetite are the conditions for a correct nutritional balance of any individual. In patients with CF, it’s however not always obvious for several reasons.
The appetite should enable a richer diet in fat and energy (about 20 to 30% more than the recommended alimentary supply for same age and sex): this additional food intake has to compensate for losses and higher needs. Due to the basic cellular dysfunction, the incomplete digestion - sometimes badly controlled by pancreatic enzymes intake- combined with the chronic inflammation during respiratory infections lead to greatly increased nutritional needs.
A good nutritional status is then very dependent on a good appetite. Consequently, it is threatened when the appetite is poor and when the intakes necessary to cover the needs and the losses are not sufficient.
Appetite is a marker of good health both physical, psychological and social. It can then be impacted by numerous causes.
Firstly, people with CF may have, like anyone else, a diminished appetite due to mood fluctuations or to school, professional or emotional worries. Such decreases in appetite don’t matter if they are occasional and followed by phases of "taking up".
Two psychological situations related to CF could impact on appetite and must be diagnosed before they install insidiously:
- first, a depressive reaction to the disease and the treatments;
- second, a reactional anorexia to the family pressure who tries, with good intentions, to stimulate or "force" the appetite.
Meals, commonly pleasant times, could then turn into painful moments of tension, or even of conflict, detrimental to patient and family well-being and health. The support of the multidisciplinary team and a psychological intervention may be particularly useful, if not necessary, to break the deadlock.
When related to the disease, a poor appetite, though, is not always a consequence of a respiratory congestion or infection.
Digestive causes must be carefully investigated as they can be addressed appropriately, by increasing the pancreatic enzymes intakes as well as water and salt. Abdominal pains, constipation, intestinal obstruction may be associated with decreasing appetite: these symptoms indicate frequent complications in CF:
- fecal impaction (mass of hard stools) that may be perceived by palpation of the abdomen;
- distal intestinal obstruction syndrome (DIOS)… which can be treated in almost all cases with a medical treatment and generally don’t need a surgical treatment.
Other digestive diseases are not CF specific but are lightly more frequent in patients than in general population: gluten intolerance (also called celiac disease), Crohn's disease, obstruction by intussusception.
Adequate nutritional care for CF patients is a key factor for good condition and quality of life.

Explanation of the refusal to drink:
Children (and adults) with CF may refuse to drink even if the weather is hot. This lack of thirst, apparently paradoxical in this situation, should alert because it could be the first sign of a disease complication: dehydration due to important loss of salt and water by the cumulative effect of a heavy sweating and a high concentration of salt in sweat. The decrease of sodium salt (NaCl) in blood concentration results, on one hand, in a decrease in thirst receptor stimulation, on the other hand, in a displacement of water from blood area to cell area. This "swelling" cell, which also affects brain cells, is responsible for a water disgust or for nausea or even vomiting which exacerbates the loss of salt and dehydration in a vicious circle.
In this situation, the water disgust has a protective effect: in fact, the water supply without additional salt, not only would not prevent or correct dehydration, but rather may worsen it by causing vomiting.
If a CF patient refuses to drink, the principle is to emphasize the amount of salt in the form most easily absorbed: salt capsule, phial of saline, rehydration solution, tomato juice, soda water heavily salted (especially Vichy St-Yorre, Vichy Celestin) or crackers.
In case of vomiting, nausea, diarrhea, weight loss, severe fatigue, apathy, cramps, headache or fever, you should quickly consult your doctor or emergency department and contact the CF center physician. If these signs occur despite appropriate water and salt compensation, you should quickly consult to hospital and inform the CF center physician.
To complete or clarify my answer on these important questions:
- feel free to ask your CF center team if you can benefit from therapeutic education sessions on these topics;
- take the opportunity to read the note " Nutrition and hydration recommendations in case of hot weather for CF people " on the following link:
www.vaincrelamuco.org/e_upload/pdf/mesures_protection_forte_chaleur_familles_2008.pdf
The Emergency Card for rare disease established for your child, with the last medical visit report and the current treatment, enables to easily transmit vital informations to all health professional, outside your CF center, you might need to consult.

Hope that answers your question.
Gilles RAULT, MD

14.05.2012