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Feeding & nutrition support

Reflux and constipation in children with PURA syndrome: questions to ask your GP

Reflux and constipation are frequently reported in PURA syndrome. A calm guide for UK families on what to note down, when to get help quickly, and what to ask your GP or paediatrician.

By PURA Family Directory team · published

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.

Why this comes up so often

Tummy troubles are a big part of daily life for many PURA families. The PURA Syndrome Foundation's clinician handout says gastro-oesophageal reflux (GERD) and constipation are frequently reported, and suggests clinicians check for constipation as part of routine care. Low muscle tone, limited movement and swallowing difficulties can all play a part, but every child is different, so the right plan always comes from your child's own team.

This guide is about getting the most out of appointments. It isn't medical advice, and it doesn't suggest any treatment.

Get help quickly if you see these

For babies, the NHS says to ask for an urgent GP appointment or call NHS 111 if your baby has green or yellow vomit or blood in their vomit, is projectile vomiting, has blood in their poo, has a swollen or tender tummy, keeps being sick and cannot keep fluids down, has a very high temperature, or is refusing to feed (NHS: reflux in babies). If your child already has a care plan from their team, follow that first. In an emergency, call 999.

What to note down before the appointment

A short diary for a week or two is often more useful than memory. You could note:

Poos: how often, and what they look like. The NHS says a child may be constipated if they've done fewer than three poos in the last week, if their poo is large and hard or like little pellets, or if they strain or are in pain (NHS: constipation in children).

Feeds and drinks: roughly how much, how long feeds take, and any coughing, gagging or distress during or after feeds.

Being sick or bringing feeds back up: when it happens in relation to feeds, and whether it seems to bother your child.

Sleep and mood: unsettled nights, arching, crying after feeds or seeming more comfortable after a poo.

Weight: bring the red book or any recent weights.

Phone videos can help too, especially of feeds or episodes that are hard to describe.

Questions you might ask

Could reflux or constipation explain what we're seeing, or could it be something else?

Should my child be referred to a paediatric dietitian, a speech and language therapist for a swallowing assessment, or a paediatric gastroenterologist?

If you suggest a treatment, how long should we try it, what should we look out for, and when should we come back? The NHS notes that constipation treatment can take several months to work.

How do medicines fit around tube feeds, if my child has one?

Who do we contact between appointments if things get worse?

Good sources of support

ERIC, The Children's Bowel & Bladder Charity has clinically approved advice sheets and a helpline for families. Guts UK publishes information on digestive conditions. For feeding more widely, see our guide to who's who in your child's feeding team and the full feeding and nutrition support section.

Questions families ask

Is reflux or constipation part of PURA syndrome?

The PURA Syndrome Foundation's clinician handout says both are frequently reported in PURA syndrome, but not every child has them. Your child's own doctors are the right people to assess what's going on.

Can I change my child's diet or medicines myself?

Please talk to your GP, paediatrician or dietitian first, especially if your child has swallowing difficulties or a feeding tube.

Sources

Checked 1 November 2026. Rules, rates and services change, so always check the latest version.

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