Name: P

Reason for referral: NG feeding due to growth faltering

P was referred to dietetics aged five months from the new urgent consultant clinic. The referral to paediatrics had been made on the grounds of poor weight gain and querying if further investigations were warranted.

P was the second child and was exclusively breastfed, with breastfeeding support involved around effective latching and feeding. There were no concerns over milk supply. P vomited moderate amounts after most feeds; bowels opened x 4 per day, korma consistency and adequate urine output were reported.  P was described as an uncomfortable infant, often squirming when laying flat post-feeds. P had been assessed for a tongue tie and no evidence of this was found.

Intake: P was reported to be breastfeeding 8-12 times daily and feed times varied from 5-20 minutes. P slept overnight but was lifted and had dream feeds x 2 roughly every four hours. 

Tried bottle of EBM and infant formula – both refused.

Biochem assessment: checked faltering growth; screen and urine electrolytes, no abnormal results.

Medication: GP had prescribed Infant Gaviscon due to frequent vomiting; however, mum found it difficult to administer as breastfeeding.

Growth: Fallen from 19th centile at birth and now below 0.4th centile (-4.08sds); length and OFC both tracking centile lines.

No developmental concerns were reported.

Dietetic assessment and integration: It was difficult to assess the volume of milk as P was exclusively breastfed and there was no reliable method to establish the volume taken per feed. Mum reported feeding well and infant feeding assessed breastfeeding techniques; presumed inadequate calorie intake given the weight loss. Vomiting was contributing to further calorie loss and appeared to be uncomfortable post-feeds indicating reflux.  Growth demonstrated faltering growth and P required an increase in calories to optimise growth. Catch-up growth needed to be demonstrated and no adverse effects on development due to inadequate nutrition needed to be ensured.

Dietetic plan: P was referred for NG feeding. However, this was felt to be an invasive leap by the dietetic team. On discussion with parents, they were keen to avoid this and continue oral feeds if at all possible. They reported P’s sibling had a similar growth pattern and it improved once weaning commenced.

With P at 22 weeks, we discussed with parents the possibility of commencing weaning using baby rice/porridge and mixing it with a high-calorie infant formula. P was developmentally ready for weaning and showed signs of readiness. Parents had discussed commencing solids before the hospital admission. We also discussed with the family using a doily cup to try to give P 20ml high-calorie formula three times daily. We discussed that Dad should do this to reduce P's desire for the breast when feeding. We agreed that we would closely monitor growth and that NG feeding may still need to be considered. We also discussed commencing a proton pump inhibitor to reduce any acid reflux and make P more comfortable.

1st review: Weight had increased 120g in seven days and feeding had improved. P was taking solids twice daily, high-calorie formula mixed with baby rice and various fruit/vegetable puree. P was also taking 20ml high-calorie formula x 4 per day from Dad and was enjoying this. P had started Omeprazole and both parents felt P was more settled.

P was reviewed regularly, which can be seen from the growth chart below, and continued to thrive. P's intake of high-calorie formula increased and P started to manage two full bottles daily, also enjoying solids. Mum and Dad continued to add high-calorie formula to these to optimise calories.

At eight months of age, P was reviewed in clinic, the parents were using 200ml high-calorie formula daily, three bottles of standard formula, and breastfeeding had stopped. P was taking solids well and enjoyed these. There had been a supply issue with Omeprazole and this had now been stopped.  P's weight at this time had improved and was now on the 2nd centile – the decision was made to use up the supply of high-calorie formula and then use standard infant formula.

Follow-up: A further review at 11 months demonstrated that P had sustained catch-up growth despite no longer being on high-calorie formula; P's weight was now on 27th centile. P continued to take standard infant formula via a bottle and consumed a variety of solids. As P's growth had improved P, was discharged from the dietetic service with the parents were advised about re-referral if they ever had future concerns.

Reflection: P was referred for NG feeding by the consultant team due to concerns about how poor growth was. The dietitian felt that this wasn’t in the best interests of the infant or the family and had concerns about how aversive the infant could become with negative associations from NGT. The dietitian developed a plan and proposed it to the medical team who were happy to support with close observation. This plan has clearly been in the best interests of the patient who has thrived without requiring any invasive interventions.

NG feeding has an important role to play in infants with faltering growth but, if possible, the oral route should always be the preferred method of feeding. For P, we ensured a period of close observation to ensure we didn’t need to step up to NG feeding.(1,2)

Name: M

Age at time of referral: 7 years

Symptoms: Poor appetite, abdominal pain (reported daily, central), constipation – bowels opened once per week, hard to pass, Bristol stool chart type 1, pale and tired.

Growth: No concerns reported by family, and no recent growth measurements; however, M is on the same centiles as at four years of age.

Investigations: Full blood count demonstrates reduced haemoglobin, MCV and MCH.  Ferritin is also reported to be low – indicative of iron deficiency anaemia = commenced supplementation via prescription while awaiting other bloods. tTG antibody level greater than 128u/ml (10 x upper limit normal for our lab is 70u/ml), EMA positive; repeat tTG antibody level greater than 128u/ml.

Diagnosis: Coeliac disease and referred to dietetics at this point.

Dietetic review: M is described as a fussy eater and not keen on eating many foods, previously would have eaten bread and pasta but has been self-restricting over recent weeks – eating potatoes and rice at main meals but refusing breakfast. M's iron intake is low and calcium intake is also low when compared with EAR. 

Dietetic plan: Education is provided around coeliac disease and a gluten-free diet, providing knowledge and empowering M to understand the condition and the management plan. A long discussion is had around alternative products and M requires lots of encouragement to try new products within her diet. We discuss gluten-free prescriptions and paperwork is provided for the family to monitor. We also discuss gluten-free school meals and how to organise these. The focus at this appointment is on the gluten-free diet, with a follow-up appointment made after two weeks to discuss strategies to optimise calcium and iron-containing food.  This information is split over two appointments as the family appears to be overwhelmed at the first appointment. Discussions are then around a planned follow-up and the need for recurring blood tests. A plan is made as M finds the thought of blood tests extremely distressing, so strategies are put in place with our nursing team to try and support this.

Reflection: The BSPGHAN guidelines now allow for the diagnosis of coeliac disease in paediatrics to be made on serology alone if the child is symptomatic. This allows for faster diagnosis with less trauma for the child and family. The guidelines clearly outline the information that should be discussed at the time of diagnosis, and there is now a significant focus on empowering the young person to ensure they understand the dietary restrictions and the impact non-compliance will have on their quality of life. BSPGHAN provides recommendations on blood monitoring and it is important to be honest and transparent around this process if children/young people are anxious to try and overcome any barriers as blood testing is required as part of the disease management.(3)