appetite

Question

Recommend medicine appetite for my grandson with CF and no appetite
Thanks

Answer

Thank you very much for your question.
In caring for a child with Cystic Fibrosis, a great deal of emphasis is placed on the importance of diet and growth. This can result in understandable family concern regarding an adequate dietary intake especially if your grandson has a poor appetite.

Poor appetite is common in children with cystic fibrosis and it is important to establish the cause of this in order to find a solution to the problem. I would recommend that you discuss your concerns with your local CF Centre Care team who will determine the possible cause of your grandsons’ poor appetite and devise a treatment plan for him.

There are several factors that can contribute to poor appetite and can include issues related to CF such as

Acute chest infections
DIOS or constipation
Taking large doses of pancreatic enzymes
Poor gastric emptying and gastro oesophageal reflux
Nasal polyps can impair taste or ability to eat or breathe properly.

Other issues
Low mood, sadness or stress
Abdominal pain, bloating or other symptoms of malabsorption
Food refusal and behaviour problems at meal times. Such behaviour has been found in over 70% of children with Cystic Fibrosis.
Children often learn that refusing to eat gets them lots of attention. To the child, even if you get angry or give them their dessert early, if food is refused, it is seen as giving attention and therefore the bad or undesirable behaviour carries on. Behaviour that is rewarded with attention will continue, while any behaviour that is not rewarded (ignored) will disappear.
To get your child to behave as you would like them to, you need to praise the behaviours you like and ignore the behaviours you don’t like.
Below are a few tips to help minimise the problem:
• Try to have family meals, so your child sits with other children/adults. This will encourage them to learn correct feeding behaviour.
• Avoid other distractions eg having the television on at mealtimes.
• If your child is slow at eating, gentle encouragement will help.
• Make food as attractive as possible.
• Never lose your temper when food is refused. In the child's eyes, any reaction is attention. This will encourage the bad behaviour to continue.
• Encourage good or positive behaviour and give lots of praise for it.
• Limit meal times to 30 minutes. Research has shown that allowing mealtimes to drag on rarely results in any more food being eaten. After 30 minutes remove the food without comment, and wait for the next meal/snack time.
• Never produce a second meal if the first is refused or give dessert if the main course is refused.
• There must be a consistent approach from all carers involved with feeding.
• Parents who are worried about their child's feeding should ask for further advice from the dietitian and/or psychologist in their clinic.

Appetite stimulants should only be considered after all other causes of poor appetite, weight loss and growth failure have been excluded.
There have been a small number of studies investigating the use of appetite stimulants to improve the dietary intake of people with CF. Megestrol acetate improves weight gain and respiratory function (Eubanks et al 2002). Cyproheptadine hydrochloride has also been reported to have a beneficial effect on appetite (Homnick et al 2005).
A recent review of use of appetite stimulants in CF provides a summary of some of the available medications that can cause increase in appetite and gives guidance on doses and side effects. (Nasr SZ, Drury D, 2008)
Because these drugs have undesirable side effects it is not recommended that they are used routinely. Their use may be considered on an individual basis and you may wish to discuss this with your local CF Care Centre Team.
The Cystic Fibrosis Trust provide a useful guide for children and parents called ‘Eating Well with Cystic Fibrosis’ (written by Carolyn Patchell). This is available from the CF Trust website https://www.cysticfibrosis.org.uk
I hope you find this information useful.
Best wishes
Dee Shimmin
References
Eubanks V, Koppersmith N, Woolridge N, et al. Effects of megestrol acetate on weight gain, body composition and pulmonary function in patients with cystic fibrosis. J Pediatr 2002; 140: 439-444. [PubMed]
Homnick DN, Marks JH, Hare KL, et al. Long-term trial of cyproheptadine as an appetite stimulant in cystic fibrosis. Pediatr Pulmonol 2005; 40: 251-256. [PubMed]
Nasr SZ, and Drury D. Appetite Stimulants use in Cystic Fibrosis. Pediatr Pulmonol 2008; 43: 209-219





Thank you very much for your question.
In caring for a child with Cystic Fibrosis, a great deal of emphasis is placed on the importance of diet and growth. This can result in understandable family concern regarding an adequate dietary intake especially if your grandson has a poor appetite.

Poor appetite is common in children with cystic fibrosis and it is important to establish the cause of this in order to find a solution to the problem. I would recommend that you discuss your concerns with your local CF Centre Care team who will determine the possible cause of your grandsons’ poor appetite and devise a treatment plan for him.

There are several factors that can contribute to poor appetite and can include issues related to CF such as

Acute chest infections
DIOS or constipation
Taking large doses of pancreatic enzymes
Poor gastric emptying and gastro oesophageal reflux
Nasal polyps can impair taste or ability to eat or breathe properly.

Other issues
Low mood, sadness or stress
Abdominal pain, bloating or other symptoms of malabsorption
Food refusal and behaviour problems at meal times. Such behaviour has been found in over 70% of children with Cystic Fibrosis.
Children often learn that refusing to eat gets them lots of attention. To the child, even if you get angry or give them their dessert early, if food is refused, it is seen as giving attention and therefore the bad or undesirable behaviour carries on. Behaviour that is rewarded with attention will continue, while any behaviour that is not rewarded (ignored) will disappear.
To get your child to behave as you would like them to, you need to praise the behaviours you like and ignore the behaviours you don’t like.
Below are a few tips to help minimise the problem:
• Try to have family meals, so your child sits with other children/adults. This will encourage them to learn correct feeding behaviour.
• Avoid other distractions eg having the television on at mealtimes.
• If your child is slow at eating, gentle encouragement will help.
• Make food as attractive as possible.
• Never lose your temper when food is refused. In the child's eyes, any reaction is attention. This will encourage the bad behaviour to continue.
• Encourage good or positive behaviour and give lots of praise for it.
• Limit meal times to 30 minutes. Research has shown that allowing mealtimes to drag on rarely results in any more food being eaten. After 30 minutes remove the food without comment, and wait for the next meal/snack time.
• Never produce a second meal if the first is refused or give dessert if the main course is refused.
• There must be a consistent approach from all carers involved with feeding.
• Parents who are worried about their child's feeding should ask for further advice from the dietitian and/or psychologist in their clinic.

Appetite stimulants should only be considered after all other causes of poor appetite, weight loss and growth failure have been excluded.
There have been a small number of studies investigating the use of appetite stimulants to improve the dietary intake of people with CF. Megestrol acetate improves weight gain and respiratory function (Eubanks et al 2002). Cyproheptadine hydrochloride has also been reported to have a beneficial effect on appetite (Homnick et al 2005).
A recent review of use of appetite stimulants in CF provides a summary of some of the available medications that can cause increase in appetite and gives guidance on doses and side effects. (Nasr SZ, Drury D, 2008)
Because these drugs have undesirable side effects it is not recommended that they are used routinely. Their use may be considered on an individual basis and you may wish to discuss this with your local CF Care Centre Team.
The Cystic Fibrosis Trust provide a useful guide for children and parents called ‘Eating Well with Cystic Fibrosis’ (written by Carolyn Patchell). This is available from the CF Trust website https://www.cysticfibrosis.org.uk
I hope you find this information useful.
Best wishes
Dee Shimmin
References
Eubanks V, Koppersmith N, Woolridge N, et al. Effects of megestrol acetate on weight gain, body composition and pulmonary function in patients with cystic fibrosis. J Pediatr 2002; 140: 439-444. [PubMed]
Homnick DN, Marks JH, Hare KL, et al. Long-term trial of cyproheptadine as an appetite stimulant in cystic fibrosis. Pediatr Pulmonol 2005; 40: 251-256. [PubMed]
Nasr SZ, and Drury D. Appetite Stimulants use in Cystic Fibrosis. Pediatr Pulmonol 2008; 43: 209-219

17.12.2010

The answer is edited by: Dee Shimmin