What is Silver-Russell Syndrome, and is it associated with poor weight-gain? Our nutrition expert, David Swain, advises.

Raisingkids member's problem
My son has been fed though a gastrostomy since he was 3 months old and now he won't eat. He gets 1000 ml of 'Nutrini Extrain' his feeding pump at night but he's still underweight and doesn't put on weight well.

He also has Silver-Russell Syndrome and a curved spine - could this have anything to do with it? If not, have you any suggestions on how to help? He is 5 yrs-old now, and I don't get any answers from anybody.

David's advice
Russell-Silver syndrome (RSS) has a number of recognised characteristics. Some individuals have many of the documented traits, while others have very few. Almost every individual with the syndrome has:

• low birth weight (Intrauterine Growth Retardation)
• decreased birth length
• triangular shaped face (lessens with age)
• long narrow head at birth
• postnatal growth retardation
• poor appetite in early years

Beyond this the characteristics vary very widely. However, the early years are often the most difficult and typically appetite will improve with age.

I'm sorry to hear that your son is struggling to put on weight at present. Hopefully, with the extra calories, that he is receiving via his gastrostomy he will start to put on weight given time. Nutrini Extra is a common feed that is used in paediatric medicine. It's dense in calories and 1000 mls will provide approximately 1500 kcals per day.

On top of having a poor appetite, it may be that your son has developed a phobia with regards to eating. This can occur with children who are tube-fed from an early age and in these cases a speech and language therapist can help with desensitisation programmes.

Finally, I would recommend contacting the Silver- Russell Support Group who should be able to give you more information about the syndrome and practical support. The Silver-Russell Support Group works under the umbrella of the Child Growth Foundation (2 Mayfield Ave, Chiswick, LONDON W4 1PW Tel. 020 8994 7625) from which support and advice is available.

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