Feeding worries: who's who in your child's feeding team
Feeding difficulties are common in PURA syndrome, especially in infancy. Here is who can help in the UK – speech and language therapists, dietitians, paediatricians – and the warning signs to report.
Information only, not medical advice. Every child with PURA syndrome is different. Please talk to your child's own doctors and therapists before making decisions about their care. In an emergency call 999; for urgent advice call NHS 111. Our disclaimer.
You are not doing anything wrong
Feeding can be one of the most exhausting parts of the early years. The PURA Syndrome Foundation's clinician handout says feeding difficulties are very common in infancy, swallowing difficulty (dysphagia) often persists, and reflux and constipation are frequently reported. It recommends a formal swallow assessment at diagnosis to check safety and the risk of aspiration (food or drink going into the airway).
Who does what
Your paediatrician or GP is usually your first port of call and can refer you on.
Speech and language therapists assess and support eating, drinking and swallowing, not only communication (RCSLT).
Dietitians make sure your child gets the nutrition and fluids they need. Most families see an NHS dietitian. The BDA directory lists registered freelance dietitians.
Gastroenterologists may be involved if reflux or constipation are hard to manage.
Community or specialist nurses often support families using feeding tubes at home.
Signs to mention to your child's team
The NHS page on swallowing problems (dysphagia) lists signs such as coughing or choking when eating or drinking, bringing food back up and chest infections. Poor weight gain, very long mealtimes, or your child becoming distressed at feeds are also worth raising. If your child has difficulty breathing or is choking and can't clear it, call 999.
Support for you
If your child is tube fed, PINNT offers peer support from people who understand living with home artificial nutrition. Some children with epilepsy are offered a ketogenic diet by their medical team. Matthew's Friends supports families using these diets, which should only ever be started and monitored by your child's medical team.
Questions families ask
Does a feeding tube mean my child will never eat by mouth?
Not necessarily. Plans are individual, and many children combine tube feeding with some eating for pleasure. Your child's team will explain what is safe for them.
Can a special diet treat PURA syndrome?
No diet is known to treat PURA syndrome itself. Any dietary change should be discussed with your child's doctors and dietitian.
Sources
Checked 1 November 2026. Rules, rates and services change, so always check the latest version.
- https://purasyndrome.org/wp-content/uploads/2026/10/PURA-Syndrome-Clinician-Handout.pdf
- https://www.nhs.uk/symptoms/swallowing-problems-dysphagia/
- https://www.rcslt.org/speech-and-language-therapy/
This article is part of our guide to Feeding & nutrition support. See all feeding listings →