Blended Diet for tube fed children in the UK

Introduction

This webpage is designed for parents and carers of children who have a feeding tube.  It's designed  for the UK as it relates to organisations and policies used in this country.  It is not a comprehensive guide to Blended diet for children with gastrostomies and NG tubes, but I have provided links that I hope will provide a fuller picture.  My focus is on providing some information into reasons to start BD and getting BD accepted and given in schools and respite care.  I also want to give people ready answers when they first discuss this with their care team, especially the dietician.  I've concentrated therefore on problems people encounter when trying to give their child a complete blended diet.   

Contact me at renacahill@gmail.com​​

Hello.  My name is Kate Stevens and I have a gorgeous grandson called Elliot.  Elliot (9) has cerebral palsy and has a feeding tube, called a gastrostomy, directly into his  stomach.  This is because he is unable to eat enough and thrive when fed orally.   My daughter and her husband also have a little one called Alex. I have helped with Elliot since he was born and make it my job to find solutions to problems!  Elliot has many problems but the only one so far we can 'fix' is his nutrition.  

 

Most children with gastrostomies or naso gastric tubes are fed milk based formulas which have been researched and formulated  to be nutritionally complete.  However, a significant number of children tolerate feeds badly and ongoing problems with reflux, vomiting, constipation and subsequent failure to thrive become apparent, often after an initial period of weight gain and tolerance.  No one knows why these children become intolerant of formula feeds but many do.  The doctors increase their reflux medication, they give medication for constipation, they either do or talk of an operation to prevent further reflux and vomiting, and the child  looks unwell, sleeps badly and is lethargic and uncomfortable. 

 

Elliot had his gastrostomy at three and a half after starting nursery and meeting all the bugs he had so far avoided.  He had always hovered below the centile line for weight but now with illness his weight plummeted and we gave in.   Elliot was initially well and gained weight but then all the problems listed above started.  We were desperate for solutions and searched the web and found Blended Diet.  Blended Diet is simply food, blended and put down the tube.

 

I won't bore you with a long lecture on the benefits of a healthy, varied wholesome diet, full of fruit, vegetables, wholegrains and all the vitamins and minerals you could ever want.  Its enough to say that Elliot is approaching the 50th centile for his height and weight, despite all the problems his cerebral palsy present us with and the severity of his condition, he has managed to achieve a healthy nutritional status. 

 

The aim of this webpage is to help other parents and carers achieve this for their child.  I will take you through our difficulties and tell you how we overcame them.  I can link to other websites and facebook pages.  I can tell you what to expect from the professionals who deal with your child, especially dieticians.  How to try to get  Blended Diet (BD) accepted in schools and respite care.  Try to explode some of the myths and misconceptions around BD that some health professionals use to dissuade parents from trying it, and some of the issues around BD generally.  

 

dedicated

 

to our little

 

star ELLIOT

 

 

And to all the parents who

 

don't just go the extra mile

for their kids but run a

 

marathon every day and do

it willingly and with love for

 

their special children

  

 

what I hope this site  delivers 

I want this site to be easy to use and to be straightforward for parents who are thinking of Blended Diet for a child of any age. 

 

This site is for parents and carers starting out on the road to BD and facing the uphill struggle to get it accepted by their child's 'team' especially the dietetic team. 

 

I want to share the knowledge I have gained and dispel some of the myths around BD so that you can feel confident in stating your case to the professionals, especially if you are trying to get BD accepted in schools and respite.

 

Mostly it is to let you know that you are not alone and there are many people out there who will support you.  All you need is to remind yourself its only food!

 

So, what is Blended Diet and why would you want to go against what your child's care team are advising you?

Blended Diet (BD) is food which is mainly home prepared and fed to the child via their feeding tube instead of the formula supplied by their NHS Trust.  These formulas are carefully prepared to be sterile and formulated to meet the individual childs nutritional needs.  Apparently.  They most certainly contain adequate calories, macro and micronutrients and can be allergen free amongst other things.  The problem for me is they are made up of things like corn syrup, soy protein, maltodextrin, vegetable oil, milk protein and a lot of added artificially produced vitamins and minerals.  If a child can only have formula feeds because of problems with their digestive system, then these formulas are life saving.  If this is the case with your child ignore everything I say because I believe in 'If it aint broke.......'

 

 

 

There are plenty of parents of children who are doing well on formula, growing and healthy and who are happy to continue with a food source that suits them and their child.  Again, if you are happy with it then that's all that matters. 

 

 

 

However many children like Elliot are suffering from reflux, vomiting, constipation and failure to gain weight appropriately. 

Its for these children that BD can be a life saver.  There are also parents out there who would like for nutritional and emotional reasons to feed their child in a more natural way, and to nurture their child as other parents do, with wholesome, healthy food, only with BD half of it doesn't end up decorating the walls! 

 

 

 

Some people are radically against formula feeling that it is detrimental to normal healthy development.  I really can't comment other to say that there are not enough long term studies into formula feeding to make a sound judgement.  There is however a recent study linking elemental formulas  (Neocate) to poor uptake of phosphate and subsequent poor bone health, rickets and fractures and is very worrying for parents.  https://www.ncbi.nlm.nih.gov/pubmed/28167344

 

 

 

What I can say though is that there are thousands of studies into the benefits of a healthy, well rounded diet rich in essential nutrients.  If we can get these healthy foods into our children via their tubes safely it can only be a good thing. 

 

 

 

One question I would always ask a health care professional who was asking me why I wanted to give food not formula, is 'would you feed your child 24/7,  365 days a year a formula containing the ingredients listed on the formula you are suggesting for my child?   

Some of the improvements seen in children given BD  

  Reduced vomiting

In many children formula feeds, after an initial honeymoon period, seem to cause endless vomiting.  Children can usually come off their medications when fed BD.  Medical advice is usually needed as some need to be reduced slowly.  Vomiting is upsetting for the child and others around them, particularly in a school setting.  It creates endless washing.  It adds to the risk of oral aversion which in itself makes eating orally less likely where possible.     

  Reduced or eliminated constipation

Because you can vary the amount of dietary fibre with BD the child can have a normal bowel movement once you have worked out the optimum amount of fruit and vegetables they need.  This eliminates medication and gives you a better opportunity to toilet train a child. 

  Reduction in reflux

Reflux, where the contents of the stomach splash up into the lower part of the oesophagus is very painful for the child and medication does not always help.  Long term use of ppi meds may not be good for the child.  A gastro surgeon said to me once TD (typically developing) children are on their feet and eating solid food reflux usually stops naturally.  BD provides solid food and has helped most children.  Many are now trying BD and finding the operation to stop reflux (fundoplication) is not needed. 

 

Weight Gain

 

Children can put weight on with formula, but if they are vomiting constantly or just not putting enough weight on then BD will usually sort this out.  BD can be tailored to the child's needs and extra calories can be added.  There is usually an issue with volume tolerance to begin with, but its usually manageable and tolerance builds up slowly. 

 

Better Health

 

Its pretty obvious that if you can give a child a super healthy diet with all those superfoods mixed in, the child will become healthier.  If they are well fed and healthier, their energy levels will increase and their mood will improve.     It is lovely to see your child with a clear skin, shiny hair and bright eyes.  Their resistance to illness improves and if they do get ill they recover faster.  This is so important if your child is medically fragile.

 

Increased interest in food and eating

 

Surprisingly children do not lose interest in food and eating if they are well fed.  Their appetite usually increases and they want to try the food you have prepared.  Obviously if their swallow is impaired they can't be given the food, but if not many children go on to eat better orally.   I prefer to make a 'proper' meal and blend it so they are edible.  Elliot loves Korma curry and will eat a little.  At school he kept stealing the other childrens custard puddings until it was decided he would have his own!   He has a severe oral aversion so even a few noodles or a chocolate button is an achievement. 

 

Improved sleeping

 

Anyone who has reflux and vomiting or feels underfed during the day will inevitably not sleep well.  A child hooked up to an overnight feed will not move so freely or risk getting tangled in the giving set.  Its also not natural for the gut to be active at night.  BD often results in better sleeping, and eventually the night feed usually goes if enough calories can be taken in during the day.

 

You feel you are nurturing your child better and feeding in a way that's more natural.

 

The sense of control BD gives you after so long with your child 'medicalised' cannot be underestimated.  The child can have party food, a slice of their own birthday cake, or a superhealthy meal other children would balk at. 

 

You can feed at mealtimes and get rid of pumps and giving sets

 

No more continuous feeding and being hooked up to pumps.  Most children can achieve this if they have a normal digestive tract.  It takes a while but its worth it when you send the pump back!

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