Real food, through a tube....

[shaz298]

Hi,

There was a thread on here a while back about this. Just wanted to say that we have made a start and it's going really well.

Luuk is now having 2 'real' meals a day through his tube. He now has normal poo (unheard of before, usually very runny but needing senna to stimulate - tmi sorry)

He is actually excited about it and excited about having a say in what he gets! He takes absolutely nothing orally so this is great.

So far we've not had any problems. No tube blocking, no vomiting, just a happy boy.

I a choosing not to tell our health professionals for a few months. In that tie I can log what he has, how it affect him, weight/height etc so that I have evidence that it's do-able and good for him in spite of the fact I know the dietician is going to raise soe huge objections.

We have contacted a private nutritionist who we see next week for the first time. Am hoping that having her on board will help to sway the medical folks into agreeing we are doing the right thing.

I'm hoping she can help us to develop our own forula which will go through the pump for overnight feeds. Luuk has volue toleration issues and will definitely need to be topped up at night, especially in the short term. However it sees that children who move to real food via their tubes often tolerate far more volume than with their formula, so here's hoping.

We are very lucky in that Santa, in the form of my mum and step dad have offered to buy us a Vitamix for Christmas which is fab as it is £429!!!!

Luuk is really dairy allergic so we are doing this without any kind of dairy at all and need to be careful with potential allergens but we are definitely getting there.

Last night he had chicken, potato, carrot and apple for his dinner. His first real dinner!!

If you are thinking about it..........give it a go.

I was terrified before I started but after the first couple of non formula feeds I am finding I a relaxing more and more. Who knows may even get to the stage where I don't even count calories....( My head will be so empty then.)

Good luck to those who give it a go.

Sharon xx

[purplepidjbauble]

That's awesome, and fantastic for you as a family, because he can eat the same as the rest of you

Well done for taking the plunge :)

[starfishmummy]

Well done. Im not sure we could do it. - volumes for our 12yo just seem too big. Keep us updated about how it goes

[shaz298]

Well........Luuk is tolerating far more volume/calories in his real food boluses than he does with his formula ones and that's only after a week of doing 1 or 2 of his boluses ( which he gets 4 a day) with real food!! He is also tolerating about double ( maybe more) of his water intake than he did before. His gut just seems to be working more effectively.......I'm so excited and glad I had the bottle to take the first step last friday with the apple puree.

xx