I avoided doing a blended diet for my son for years. I sat on a Facebook group stalking and listening. If I’m honest, my medically tinted spectacles probably tipped me towards thinking it was a bit hippy. The irony that feeding your child actual food could be deemed ‘alternative’ didn’t quite seeped in as being as ridiculous as it actually is. The fact that it also meant extra work for me – was just a step too far.
But then my son’s reflux became significantly worse and he started having investigations for the possibility of a jejostomy. His milk feeds were needing to be slowed and he was missing out on activities because he was attached to a pump. It was then it felt I had no choice but to at least give it a try.
So tentatively we started transferring my son’s milk feeds to a blended diet when my son was over 15 years old. This meant getting food from my cupboards, the meals we were placing on plates, blending them and feeding them to him via his peg/mic-key (the hole in his stomach). Slowly we replaced specialist formula provided through the NHS for home made food (or pre-prepared baby pouches).
We had to work out calories, protein, micronutrients and volumes. It was cumbersome to begin with. Unfortunately, through this process we weren’t supported by our local team. In fact, we were actively discouraged and the documentation we were asked to sign in order to get their support was punitive, patronising and simply inaccurate. The level of scrutiny the proposed did not match the potential risks. For example, I was requested to complete an on-line food hygiene certificate and a kitchen inspection was proposed.
We sent a long email to our local team detailing why we were pursuing blended diet and why we wanted their help. As part of that email, we listed all the reasons we couldn’t stop the process of transferring to a blended diet. Once in black and white, stopping the blended diet wasn’t simply a choice we made, rather to stop it would be negligent.

Here are the benefits we have noticed since starting blended diet for my son: 

  1. Significant reduction in gastroesophageal reflux symptoms (GORD) From clinically identified (eyes watering, smelly breath, gagging, coughing, choking) reflux 12+ times in every 24 hours to less than once a day.
  2. Reduced constipation 
    Our son’s diet now includes Weetabix, prunes, apricots and fresh fruit to maintain healthy bowels.
  3. Reduced reliance on prescribed medication 
    The dramatic reduction in reflux has resulted in no PRN Gaviscon which was previously a daily occurrence. With such a marked reduction in reflux, prescribed regular Domperidone is also being reduced alongside the cessation of daily Laxido for constipation.
  4. Freedom from milk pump 
    With worsening reflux our son’s rate of his milk had been reduced to the point of each feed taking more than an hour and half to complete. This was impacting on his ability to participate in learning activities with his time in rebound therapy, swimming and various postural care positions all reduced.
  5. Avoidance of medical procedures 
    Just before starting the blended diet our son’s GORD was so bad we were exploring the possibility of a Jejostomy – not anymore.
  6. Reduced cost to the NHS 
    The NHS is no longer paying for feed 24/7. His medication bill and his milk (E028) bill has reduced along with overwhelming amount of clinical waste produced.
  7. Flexibility 
    It is now possible to match our son’s nutritional needs with his physical activities. When he gets out of the swimming pool (his most cardiovascular activity) he is given a snack.
  8. Sensory, socio- and psychological factors 
    Our son is experiencing food in a new way for the first time in over a decade. When he is being fed blended meals, he is also being given tasters to know what that food is. As parents, we are once again feeding our son as part of our mealtimes, preparing food and reacting to social situations.
  9. Improved gut and general health 

Instead of being fed sterile, artificial feed in a highly medicalised way for the past 14 years, our son is now experiencing a range of food and meals. The effect of this on his general health in particular his gut microbiome is potentially huge and far reaching.

This is the first of two blogs.

Next week, I’ll give you a little glimpse of the rant the ensued when I reflected on the hoops we needed to jump through to feed our son food.