Feeding & nutrition support

Feeding can be one of the hardest parts of the early years with PURA. Here is where to find professional and peer support in the UK.

Guide · last reviewed 1 November 2026 · information only, not medical advice

You are not alone

Feeding difficulties are common in PURA syndrome, especially in infancy. The UK natural history study describes hypotonia, feeding difficulties and breathing abnormalities in infancy. GeneReviews mentions feeding therapy and swallowing assessment. Any decisions about feeding, tubes or special diets belong with your child's medical team.

Who can help

Speech and language therapists assess eating, drinking and swallowing; see the RCSLT. Registered dietitians can be found through your NHS team or the BDA directory. For families living with tube feeding, PINNT offers peer support. Matthew's Friends supports families using ketogenic diets for epilepsy, which must only be used under medical supervision.

Sources

4 listings

British Dietetic Association – Find a dietitian

Search the BDA's freelance directory for a registered dietitian, including those who specialise in particular conditions.

Professional body · UK-wide · checked 2026-11-01

Matthew's Friends

Charity supporting families using ketogenic dietary therapies for epilepsy – recipes, information and events. These diets must only be used under the supervision of your child's medical team.

Charity · UK-wide · checked 2026-11-01

PINNT

Patient-led charity offering friendship, support and advocacy for people on home artificial nutrition, including tube feeding.

Charity · UK-wide · checked 2026-11-01

Speech and language therapy for swallowing (RCSLT)

Speech and language therapists also assess and support eating, drinking and swallowing. The RCSLT explains the role and how to access therapy.

Professional body · UK-wide · checked 2026-11-01

Missing someone? Suggest a provider.

Questions families ask

Why are there so few listings here?

UK feeding support is mostly delivered by NHS teams, and few independent services publicly mention PURA. Please suggest a service you have found helpful.

Articles

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.

More practical guides for this topic are on the way. Get updates to hear when they're published.