There are lots of reasons why families first have an interest in using blended food and there are also lots of different ways in which people use it as part of a tube fed persons diet.
Let’s look at some of the reasons:
Some children and young people who are tube fed suffer from acid reflux, retching and vomiting symptoms. Often families are advised to give enteral formula at a very slow rate over a long period of time to help manage these symptoms – sometimes this doesn’t work or it is impractical to do because the child is attached to the tubing and a feeding pump for a long time.
Doctors can provide medication to help manage these symptoms (antacids or anti-sickness or both) but for some these do not seem to work. These symptoms can have a big impact and limit what the child or young person is able to do day to day.
Many families have found that using blended food has improved these symptoms. It is possible to see an improvement in symptoms just from adding a very little blended food into the tube fed person’s commercial enteral formula. We don’t really know why or how this can help. One theory is that the blended food is thicker than the commercial formula which helps it stay down.
It was just so tying. She couldn't join in things because she was constantly attached to the pump.
I felt like we had run out of other options, he was constantly on the pump being fed at a very slow rate but still being sick and not thriving at all.
People who are tube fed can be prone to either (or both) constipation or diarrhoea. To manage this doctors often prescribe medication. We know that introducing some blended food can help to normalise bowel habit. In the longer term, some families have found they have been able to reduce or even stop using bowel medication.
Again, the way in which this works is not clear, but one theory is that using blended food means lots of different types of fibre (such as fruit and vegetables and wholegrains) can be included in the tube fed person’s diet. We know that fibre is very important to help the gastrointestinal tract function properly and encourage the growth of healthy gut bacteria.
He just could not go without huge interventions. He could go for maybe a few weeks which is not healthy, it used to be upsetting seeing him that upset and in that much pain.
[after starting to use blended food] He did a poo for the first time in his life, a proper poo!
I can adjust it, if she's getting maybe a little bit constipated, the next blend I could adjust the fibre, I've got control.
Parents who have started to use blended food often comment that their child seems to have brighter skin, glossier hair and that their fingernails grow more quickly. They also seem less prone to coughs and colds. This is not something which is easy to measure so has not been looked at in medical trials.
However, it does make sense particularly if the child or young person has stopped being sick as often; they will be keeping more food down and so be able to absorb more vitamins and minerals from their diet. We know that vitamins and minerals are very important for general health and wellbeing.
She gets less colds and flus, her body resistance to those has improved a lot. She was very vulnerable before, if somebody looked at her with a cold, she would catch it.
Comparing [her] to how she was on [commercial] formula, she seems to have a bit more energy, she seems to be more responsive, she just seems to have that bit more sparkle in her eye.
Her hair is glossy, the spots have cleared from her face, her skin is brighter and her nails grow ever so quickly.
Some families choose to give their tube fed child exactly the same meals as the rest of the family, just blended. This can be a good option if the tube fed child or young person does not have any special dietary needs (for example allergies or high energy needs) because it is easier to portion up a balanced meal.
That kind of binds you to the family. You can go home thinking there's four people in this house one person is severely disabled and fed by a tube but guess what we are all sat round the table and having the same dinner, great that's just... you can't put a price on that.
Other families may only share the same foods as their tube fed child on special occasions because they have to prepare special meals for their tube fed child or have to eat at different times.
Very often particularly on school days she doesn't actually eat with us she wants to lie on her bed as soon as she gets home, so I'll do her feed in her bedroom while [younger sister] is eating hers in here so it's not, oh wonderful family togetherness, but it's still actually here comes your dinner, you are having food.
I would love to be able to just feed him whatever we are eating, but he has a long list of allergies, we have to be very careful what he gets. I tend to cook for him separately.
Using blended food means the tube fed person has the chance to have ‘real food’ - the same every day foods that people eat orally. Commercially prepared enteral formula can feel more like medicine than a food possibly because it is prescribed in set doses and volumes by a healthcare professional but also because it looks and smells the same every time.
The food we eat orally in comparison varies hugely. Most families who choose to use blended foods pick healthy, fresh and nutritious food ingredients to make their blend recipes (although most also include treats in moderation too).
Healthy food choices are likely to have a positive improvement in overall health and wellbeing too.
My friend has an allotment; they'll say what can I grow for [her] I want to grow something that she can have, Or my mum might bring something from her green-house for her. They feel like they are contributing something.
It can be difficult to have a feeding tube particularly if you are unable to eat any food orally alongside. Some families have said they felt like their tube fed child was missing out on social experiences that involve food (for example birthday cake).
On the other hand, for other families this is less important and they prefer to only put healthy low sugar and salt foods through the tube. This choice may depend on whether or not your child is able to have food orally as well as through their tube.
There's always food involved, food is part of our life, of our existence. I feel if I didn't give [her]
normal food she would miss out on this. For me on a psychological level that is extremely important.
Cognitively, he wouldn't understand or recognise what a cake was so I wouldn't choose to blend one. Other children may well or their siblings may well so I can understand why some parents choose to.
I especially like Christmasses and birthdays where we blend cake and things and have a bit more fun with the blend and it's just nice to know that she's having the fun festive food and the treats that you're all having its quite nice like she not missing out anymore.