Real Food via tube - Any other Scot's??

[shaz298]

Hi All,

I give Luuk a blended diet ( BD) of real food, pureed and given via his gastrosotomy (button).

In spite of the fact that he is doing much better on this nuitrition than he has previously on any medical feed, there is a blanket NHS policy which says it should be done. Many of the professionals involved with Luuk are personally happy for me to do this, but professionally must say that we should be using a medical feed as they can't go againsyt NHS policy.

This is not sitting well for me. Many of the professionals involved have said that they are happy for ME to do this but that some parents would put their child at risk if they did this, hence the reason for the blanket policy. I don't thinkj this is fair at all. Some parents abuse their children, but we don't put all childen in care as a result!

Anyway, I have contacted the Children's Commissioner for Scotland, in the first instance to see if he can help to get this policy changed to allow for indivivuality where it would be beneficial to the child.

It would be a great help if I could tell him about other Scottish children facing the same challenges as Luuk because of the policy, i.e not being able to have their normal diet when in hospital, schools refusing to give real food down their tube etc etc.

There are loads of peopleI know who do give real food and are being very supportive of this ( thank you all ), but they all live south of the border. Surely I'm not the only person living in Scotland doing this?

Maybe you do do it but haven't told the medical folk for fear of what they would say? I'd love to hear from you too please?

Am hoping the children's commmissioner will get back to me mnext week and make arrangements to talk with me about this.............so all and a ny support is appreciated in order that we can maybe make a change which affords our tube fed children the same rights as everyone else, to enjoy a healthy, balanced diet.

If you want to chat more about this or what I would like to achieve please just ask or PM me.

Thanks for reading

Sharon xxx

(Apologies to those of you who have already read this on the other board)

Hi Sharon, hope you get other mums to back you in scotland. FWIW i agree with what your doing, however my ds isnt tube fed so unable to help. hope others come along soon. frm another sharon in scotland lol xx

Hi Sharon
My DD has been tube fed for the last 3 years having previously eaten a normal but pureed diet orally. We have recently discovered that she has fractured her leg and have started to question the contents of the ready prepared feed that she is prescribed. The dietician has now confirmed that DD is getting insufficient nutrients from the feed due to the small amount she requires to put on weight. Her disability already leaves her vulnerable to weak bones but the fact that she has not apparently been getting enough vitamins (in particular Vitamin D) through her feed for the last 3 years has probably exacerbated the situation. She is now on vitamin supplements in addition to her feed.
Whilst I have no experience of putting ordinary pureed diet down a tube (in fact it would never have occurred to me to do so) I hope that this additional piece of information might be used to strengthen your argument for doing so.
Good luck

Thanks folks.

Bigblues, I dare you to suggest it to your daughter's dietician and see what she says. I bet her face would be a picture, even though it is sensible.

Actually before the commercial formulas existed ( 60s and 70s), people with tubes had no choice but to have real food down their tube. I do really think most if it is to do with control on the part of the dieticians.

I should have listed above all the positives my DS has experienced since having real food, so here goes:

He can have breakfast, lunch and dinner, instead of being attached 20 hours per day to his feeding pump, whihc was too heavy for him to carry and therefore restricted his mobility!

Because he isn't attached he can access more activities which help to promote his general development!

Because he isn't permanently attached to his pump in school, he is safer as there isn't much chance of his button being pulled out!

I have stopped 2 of his medications successfully!

He has control of his bowels for the first time ever!

He is putting on weight after not gaining anything in a year!

He doesn't have so much trouble with reflux!

He doesn't vomit as easily.

Quite a few really...........and all down to real food.

Here are a few interesting links for anyone who is interested in giving real food via tube and how it affects people:

Link to the blog: youstartwithatube.blogspot.com/

Link to the blog post about the survey results: youstartwithatube.blogspot.co...y-results.html

Link straight to the survey results: svy.mk/fg6rvo

( Sorry you'll need to copy and paste into your browser - don't know how to do it the other way)

Thanks again xxxx

am not from scotland but dd is tube fed but hoping one day she will eat orally again, dd as lots of allergy to food so just on neocate but due to hair loss and other things she as a mulity vit called serivet every day . but if we new she was staying tube fed i would give it a go, she nearly 4 years old

Trace, I am continually surprised how many people are doing this. The only thing is that because og the attitudes in medical circles many people are too scared to say that they do it and therefore the profs aren't aware how many of us thee are. xx

Surely I am not the only Scot doing this ?? It is such a fab way to feed my DS. He is so healthy now compared to previously and has gone from the 14th centile for his BMI to the 58th and in 10 months!! :) :)

As my name implies I am old. I did my paeds in the 60's. Giving pureed food via tube was fairly normal and they all did very well.

"old - I know, but that argument doesn't quite cut it with the medics these days! We have been lucky that I know my rights, DS's rights and have had the 'guts' to basically go against medical advice. The difference for DS's health and quality of life has been amazing. It's obviously not for everyone, but for us it really has made such a difference. I do know lots of others who feed their child or themselves in this way, but not a single one of them lives in Scotland!! xx

No sadly it doesn't They Who Must Obeyed. On a lighter side long ago I knew a young man who when he went clubbing used to chuck several vodkas down his tube so he could get pissed like his mates! xx

2old - Lol at that. Recently my Dad was very ill and was in ITU. Talking with one of the nurses about DS's feeding and she said that there was a man in ITU who has 2 shots of whiskey prescribed to be given each night before he went to be, and was administered via his peg!! And this was recently.

We have made progress in that we are doing it full time ( no medical feed at all) and managed to get children's hospital in Edinburgh to 'allow' us to feed DS in this way during a recent admission, resulting in them now having a risk assessment and policy for giving real food via tube, so future admissions should be much easier.

Hi Sharon
I was interested to read your post. I'm in Scotland, but my tube experience is different to yours. Imo Drs simply can't be a*d with tube fed kids. I knew that my dc could/should be eating orally. When I asked for help getting him off the tube I was told by consultant "he's breathing - what more do you want?"
I wish there had been a support group in Scotland for families with tube fed kids at that time.
The children's hospitals in Glasgow and Edinburgh both have family councils who might possibly be able to advise. There's also WWW.kindred-scotland.org (?) who have an advocacy service.
Anyway well done you for thinking to put something other than formula down the tube.

OP who hopes her child can eat orally again: we went to a clinic in Austria to kick start the tube weaning. They now do a remote service, I think its WWW.notube.at

Oodles - IS your LO now tube free? Fab. Rubbish that you had to go abroad to get support. All well with your LO now? We are in Fife btw.

My LO is highly unlikely ever to eat orally. His gag reflex is so exaggerated that this is a major issue. He is now 6 yrs old and by far the oldest child with such an exaggerated that any of our team have worked with. He is very complex, but cognitively well. He has physiological and psychological issues added to the fact he is unable to taste/smell and doesn't experience hunger........so if he does ever eat ( he has recently started having tiny sips of water - manages about 20mls per day, so we are maing a start) I'm not sure he will manage to eat sufficient amounts to be able to lose the tube. TBH I'm not that bothered. As long as he can get the nutrition he needs then I don't much care how he gets it. At the point in his life when it would have been optimum for working on his oral eating skills and getting over some of his physiological and psychological barriers to eating we were busy just trying to keep him alive, so at that point trying for oral eating/drinking wasn't a priority.

I do hope that he can progress so that he is at least able to have a proper 'drink', which in itself will help him more with the social aspects of life. xx

Yes ds has been tube free for a few years. He was 18 months went we went to the clinic, so still just about in that optimum period. there were older children there too. ds didn't have physiological issues but my psychological issues were massive.
Like you say being able to join in with eating and drinking is so fundamental. Do contact the people in Austria, they might. have some advice on helping your boy be able to have a drink orally.

Well done you and LO. SO glad you managed to do what was best, in spite of the restricitons placed by the NHS.

Thanks for the info, but the system in Austria is not for us I'm afraid. I have looked into it but coudln't do it for various reasons, one being that physiologically Luuk has difficulties with his oromotor function and another that he really doesn't experience hunger. He had not been fed for 2 whole weeks before and didn't complain or give any other indication of being uncomfortable/hungry!! He has never had any instincts surrounding eating ( i.e. no rooting reflex when he was a baby etc)

We lived in Netherlands until Luuk was 18 months old. They do a similar programme there buit only accept children up to 2 yrs old as they believe that after that age the instincts which they are trying to stimulate will not kick in.

However we are happy to go slowly and try and encourage him to at least be able to drink. At the moment he can manage 1ml at a time without choking, anything more it too much and he chokes. Also anything thicker than water and he gags, with even just 1 ml, so it will be a long process. But right now he wants to drink so we are going with it and doing everything we can to suport and enourage his oral drinking.

The blended diet is our compromise really. If he is pysicaly unbable to eat food, then we will make sure he can have a fabby diet anyway :)xx

I'm glad you got the hospital to accommodate your diet. And that's great that your boy is motivated to try drinking water. I hope he gets there with it.

Interesting update............the British Dietetic Association have now agreed funding to do research and to draw up policies/procedures for giving real food through a tube ( Blended Diet), due to the number of people now wishing to pursure this as a positive choice for the nutrtion of their tube fed children. :)