BLENDED DIET FOR TUBE FED CHILDREN IN THE UK
Blended Diet for Tube Fed Children in the UK
This webpage is designed for parents and carers of children who have a feeding tube. It's designed for UK organisations, guidance and policies.
My focus is on providing some information into reasons to start Blended Diet and getting BD accepted and given in schools and respite care.
I've also added a section on the new BLENDS Project. A research based Web Resource designed to help parents and carers give Blended Diet. A collaboration between by Nottingham University, Professor Jane Coed, Dr Sarah Durnan and Vygon UK.
I want this website to encourage parents and carers of tube-fed children to think about how their child is fed, and whether a Blended Diet might be a suitable option for them.
I show the benefits of Blended Diet, and compare it to traditional formula feeding, especially now that it has become better known and more accepted.
I show how to transition from formula to Blended Diet in easy stages, tailored to each particular child group.
I show the steps you can take to have Blended Diet accepted in school and respite settings, and what steps you can take if you meet resistance.
Dedicated to our little star Elliot
About Me
Hello. My name is Kate and I have a gorgeous grandson called Elliot. Elliot 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. I have helped with Elliot since he was born and make it my job to find solutions to problems! Elliot has many problems but so far the only one we can 'fix' is his nutrition.
Many children with gastrostomies or nasogastric tubes receive commercially prepared enteral formulas which have been researched and formulated to be nutritionally complete. However, some 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. There is not always a single explanation for gastrointestinal symptoms in tube-fed children. A child's underlying condition, gut function, feeding regimen, medications and the composition of the feed can all potentially contribute to intolerance of feeds. 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, food that you can tailor exactly to your child's needs and modify as necessary.
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 get Blended Diet (BD) accepted in schools and respite care. Try to explode some of the myths and misconceptions around BD, and get it accepted.
What is Blended Diet
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, you're both doing great.
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 or diarrhoea and failure to gain weight appropriately. For many children, a carefully planned Blended Diet can improve gastrointestinal symptoms, feeding tolerance or quality of life. It's 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 parents have the right to choose how they feed their child, based on their beliefs. There is a study linking elemental formulas (Neocate) to poor uptake of phosphate and subsequent poor bone health, rickets and fractures and is very worrying for parents. If your child is on Neocate it is important to remember that children receiving specialised formulas need appropriate clinical and biochemical monitoring.. 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 and nutritionally adequate it can offer real benefits for the right child.
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?
What to feed
What you feed your child is one of the concerns of the British Dietetic Association. Most parents will have sensible ideas about child nutrition. It makes no sense to anyone to replace highly processed formula with another group of highly processed foods from the supermarket every day, but the occasional treat like a pancake and syrup snack won’t hurt in a mainly healthy diet. Typical children on healthy diets have special treats and snacks so why shouldn’t your child?
I would not give coco pops and similar high sugar cereals to my typical children simply because high sugar diets are not healthy ones. I would use foods such as oats and fruit, and age-appropriate ingredients such as nut butters where these are suitable for the child. Honey should not be given to children under 12 months. If there is a long list of ingredients on bought items I would be inclined to make it myself because I know what is in it. However if you are very busy use whatever is best for your family circumstances with an eye to healthy options. Other children would be eating cereals I know, but because the contents of a blended feed can be chosen and varied, families have considerable control over the foods included in their child's diet, you can make it a bit healthier quite easily without all the arguments from them. Dieticians should be supportive and optimise diets if you are starting out on BD.
Keeping a food diary until you comfortable with BD will allow you to know which foods are well tolerated and others not so. The dietician can also check this and give you some advice on optimising the intake and ensuring it is balanced and healthy.
Finally. There is plenty of help to be found by following the links on the last page. It is not a venture you will take alone. There are many more families out there on the same path. However, should the child become unwell, stops gaining weight, has persistent vomiting or diarrhoea, or you are concerned that they are not receiving enough fluid or nutrients, seek advice from their healthcare team.
Disclaimer
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment except purely for the purpose of using Blended Food for tube fed children in the way I have described. I cannot accept any legal or personal liability for the outcomes of actions taken by anyone using this information in an unintended way. This site and its information contains freely available information from appropriate sources. I am not affiliated to any organisation or official body. I receive no payment for this information and do not ask for any. This website provides general information and personal experience. It is not a substitute for advice from your child's paediatrician, dietitian, nurse or other healthcare professional. Every child is different, and decisions about enteral feeding should be made with the child's healthcare team.