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.