H: Sensory Processing Disorder and Paediatric Feeding Disorder

H was exclusively breastfed and at weaning it started to become apparent that he had some sensory issues.

At weigh-ins we were told it was normal and he would learn to eat. At 1 year he had a check-up appointment and despite having tried to get him to drink fortified milk, his weight was still worryingly low.  An NG tube was inserted to increase his weight. Unfortunately, he vomited much of his milk, and we spent the next 18 months in and out of hospital, having various tests, being written off with reflux.  Changing milk and feeding routines had little effect. The NHS staff supporting us suggested various methods to get him to eat whilst tube feeding him but with all the tube changes and vomiting his gag reflux and sensory issues amplified. 

A desperate google search brought up The Feeding Trust and we approached them for help. After an assessment by the team, he was diagnosed with Sensory Processing Disorder (SPD) and Paediatric Feeding Disorder (PFD).

An individual plan was created according to his condition, age and development stage which was implemented in stages both in person and virtually (through COVID).

The turning point was getting a PEG fitted and changing to a blended diet. The removal of the tube, plus the lower volumes of food reduced his oral aversion which allowed us to more successfully teach him to eat.

Over the next year we reduced his feeds whilst enjoying food play and slowly increasing his safe food list. He put on weight, but more importantly his confidence and stamina increased allowing him to learn to ride a bike and play in the playground.

He became the happy cheeky little boy we only had glimpses of on good days. He has since started school and whilst he still has sensory needs and doesn’t yet have a wide range of food, he is a happy little boy who is learning to read, write and play along with his friends.

The team not only supported H and came up with a plan that worked, but they were incredibly supportive of us, the nursery and our family throughout the process.

Available for questions, training, filling out application forms for funding or support from the council, cheering us on and making us feel heard. Whilst our dedicated NHS team were incredibly supportive, they simply didn’t have the experience nor capacity to give us the support H needed.

We couldn’t have done it without The Feeding Trust team, and we are so grateful we found them, and they were able to help us, and H reach his full potential.

I hope that they can grow to support more families like us and spread knowledge amongst schools and support workers to be able to identify where there are issues and get the advice they need.