Hi, I'm Jenny Trott. In this video we're going to be learning more about blended
diets or blenderized diets, which is a way of feeding somebody normal family food
instead of bottles of feed or pouches the feed, to someone who has a peg or a
button,who's fed enterally. straight into their stomach. To find out more about
this I'm going to be talking to Elis who is the mom of Victor, and she's been
using blended diets for Victor for six months and so she's going to be sharing
the things that she has learnt during that time and it's going be my first
Skype interview. Please remember that Elis and myself are not professionals
we're just mums with some experience, so if this does interest you and you
want to know more, then please go and do some more research, speak to the
professionals that are involved with the person that you care for, and don't make
any changes to their feed until you've done that.
I hope you enjoy the film.
Hi Elis, thank you very much for joining me on my first Skype interview.
Hi Jenny thanks for having me. We're going be talking today about blended or
blenderized diets, but I think it would be really nice if you
introduced your son Victor to us first. So Victor is two-and-a-half. He's a very
happy boy. He does have a disability, his condition is undiagnosed but one of
his symptoms is feeding difficulty, so he's not able to eat enough orally to
get enough calories or liquids. So that's why he's got a feeding tube directly to
his stomach and that's called a mini button. Okay, so what, I sort of explained
very very briefly at the beginning of the video, but if you could and tell me
what a blended diet is for people who don't know. So blended diet, we like to
say it's family food blended down and given through the tube. So it literally
is as simple and straightforward as that, it's just normal
food. Absolutely, absolutely. And what would you normally be giving
Victor if you weren't giving him that family food? So if we weren't giving that
we would be giving the artificial feed. And that's the stuff that comes in the
bottles and the pouches that you get on prescription. That's right, yes, from the
NHS. So this might be a really obvious question to ask, but just in case anybody
watching needs to know the answer, why would you do a blended diet then, in over
the instead of giving that bottled feed? Well the artificial feed can really
have an adverse effect to the gut, and to the person who's consuming it.
So with Victor we noticed that he was, well the the worst thing about it was
the reflux and the vomiting. So because the feed wouldn't, just didn't
kind of suit him he would be vomiting up to six times a day. I read about blended
diets online and it said because of the consistency
and just because that's what we're meant to be eating as humans, that can make
that a lot better. So that's why we wanted to give it a go.
When I first came across blended diets years ago when my son first had a peg, it
I more came from it from the perspective of, I'm a feeder. That's kind of what I
love to do, I love to cook and I love to feed my family and it just felt really
wrong not to be doing that so it was lovely to find a way that I could.
Absolutely we feel that as well. And that's why we like to say it's family food
because Victor can join in with what the rest of the family is eating. And for us
it just feels like it, it feels better feels like we can feed our son for the
first time really. How did you find out about it in the first place?
Well reading online, and then also one of the the people, that one of the other
families that our respite nurses look after, we'd met them at a respite
event and I saw that they were giving their son something bright orange
through the tube. And I'd ask what kind of milk that was and they told me it was
orange juice! So yes I was very very interested then and they were, their son
that was the same age as my son and he seemed to really be thriving. So what can
you blend, what can you put through or what, maybe it's easier to say what you can't put through
a tube. I mean what what do you use? Yeah, well I think you can for literally
anything through the tube, but some things blend better than others. Some
things you need to use a sieve or a strainer for. So berries with seeds.
Those seeds can block the tube so I think you can definitely have them, but
you just have to be careful and use a sieve to get the seeds out. And other
foods that get a bit gloopy are very starchy foods like potatoes and pasta
and bread and rice. Those things we don't really like to blend because they get
very gloopy and they can kind of clog the tube. But you can't feed them as long
as you add enough liquid in. Okay so you're talking about blending,
obviously the word is blended diet, what are you using to do that blending, do you
need a special piece of equipment? You just need a blender. I think you can use
pretty much any blender. As long as you use a sieve after I don't think you need
one of those very expensive £200 or £300 blenders. They are great but you can just
go to a shop and buy any blender. The more powerful the better, and the less
straining and sieving, yes, so it's just less work if it's a more powerful
blender. Talking of work is this something that takes you hours to do? It
does take some time, and cleaning up after take some time as well. But it's
I find it manageable, because as I'm cooking for the rest of the family
Victor's lot just gets blended. Some people choose to batch cook and batch
blends. I'm not quite that organized. I do sometimes. If I have cooked a big batch of
food I'll do that, but really on an everyday basis it's just what we eat that gets
blended for Victor. And you mentioned earlier about some seeds of fruits
blocking pegs. When I've heard professionals talking about blended
diets one of the first things they come up with as a reason not to do it
is. oh you'll block but peg, or your block the button. What's your experience of
that? Well we've never managed to do it yet, and we've been feeding a blended
diet probably about six months now. And definitely if you use a sieve
or a strainer I don't think there's any risk of that at all.
Also I kind of feel that why they're so scared of that happening is the cost of
new buttons to the NHS. So we in our area are allowed one new button every six
months. And they've told us that the cost of that button is £150
so I think they may also be thinking of the cost. Okay
I mean from our experience the only time I've ever blocked a tube is with
medication. Yes. Crushing pills, you know. I never did it with a
blend. so yeah. I think you're probably more likes to do it with a tablet. Absolutely.
How do you make sure that Victor gets all the right calories and nutrients
that he needs? So that's quite an interesting one. At first it did cause me
quite a lot of anxiety. Am I giving him the right things, am I giving him enough?
How do I know? How do I know if I've got it right or wrong?
So our dietician told me to feed him what I think an average child of his age
would be eating, and just the same things as well and the quantities. There's also
pretty good advice out there, by the government, of what is the portion size
for a child of any age, which i think is a useful guide line. But otherwise
they said that you don't weigh food that you feed other children, or yourself.
You just eat. Yes that's my thought as well, is that I've never never had
those anxieties about what I fed my other daughter, but I think because it
suddenly becomes this almost medical procedure we worry more about getting it
right. Yes, yes that's that's my feeling as well. So I'm really trying to kind of
de-medicalise my own mind. And it does seem more natural to do this and I try
to just see how his nappies are for example, if I'm thinking about liquids.
You know and all sorts of other bowel movements as well. I just check
his nappies and his weight and kind of go by that. We've mentioned
professionals a few times already. What's been your experience of the reaction
when you've talked to people about doing a blended diet? Very positive actually.
Yes in our area they really seem to be on board with it. Also when we first had
the peg changed to a button, I told that our surgeon Mr. Lee at John Radcliffe
Hospital in Oxford, I told him that I was planning to feed Victor a blended diet
and he had a very positive reaction to that. He said that he had
recently changed his mind about it. That if I'd asked him two years ago he would
have said, oh no, no way don't do that. But he had seen some new research, he'd seen
his patients thriving and he was, yes absolutely on board with it. He said that
there's something in food that we don't quite understand and we can't replicate.
And that's been our experience as well with dietician, with respite nurses.
So our respite nurses are allowed to give a blended diet if I have prepared
it, they're allowed to give it they just need to know what's inside, just in case
there's any reactions or anything like that. But the one place we struggle with
is school. So he does go to a specialist school but they're still working on
their policies. I believe they say it's the council that is not giving them the
go-ahead. So our respite nurses and some other
health care teams are all working together, and having their conversation
with the school and with the council of what's best to do really. But we're
quite keen for them to respect our wishes at school. Yeah, I'm sure. So how do
you get around that? That he's not able to get any blended food at school? At the
moment he only attends for three hours a day. So it's not a long time. So I'm quite
relaxed about it at the moment, and so that means when he goes he will have one
bottle of artificial feed while he's at school. And because I mentioned earlier
about his vomiting on the artificial feed, but it seems to be that even if he
has the majority of his food blended, then those few artificial feeds will sit
much better, and he still doesn't vomit. Because of course it's not an
all-or-nothing thing. It can be, you know, a bit of each according to what your
circumstances are and what you're able to do. Definitely, definitely we started
out with just one blended meal a day. We wanted to see that it is would suit him
so we would do a dinner with him, and just gradually increased it. But some
days when we're very busy or when we're travelling we can even give him
all day we we could give him an artificial feed as well. So it does
depend on what's going on around as well. Yes, so what do you do if you go out
visiting somewhere, or you go traveling and you're not in your own kitchen? How do
you manage that? Yes, so that's a bit tricky because I think I may have over
educated myself with food hygiene standards! So at the moment when we
do go travelling when I'm not in a kitchen of any sort we just feed him
an artificial feed. But I believe some people, they do it with freezer bags and
hot water to warm things up, so it's definitely possible to give it on the
go as well. And certainly on holiday. So we're planning to go on holiday in
the summer, abroad, so we'll just be taking a blender and sieve. Have equipment, will travel.
Yes absolutely. You've mentioned a few times about doing research online and
and things like that. I presume there are really good resources that I can list
underneath this video of the different places that people can go to find out
information. Absolutely there's a support group and a few websites that
I have found useful. So Elis thank you so much for sharing all of your
knowledge and experience. I'm sure that's going to be really useful to lots of
parents watching thank you so much. Oh my pleasure,
thank you Jenny. Thanks bye.
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