Bit of a stick situation!!

[lexielexielexie]

My daughter is fed via a gastro tube up to 6 times a day. Things go fine during the night as she is on a constant pump which automatically feeds through the tube over a period of 6 hours. Our problems are when we do her other feeds in which we pour the liquid into the large syringe connected to the tube.... The little madam is starting to play games with us and tries to knock it out of our hands or likes to wriggle away! There is no way of covering the syringe and so the milk goes everywhere... I rocked up to work yesterday smelling of sickly sweet apple and banana flavoured milk.

I've spoken to the ta's at maddys school and they're beginning to notice the same behaviour! I don't know how to approach tackling it as I can't begin to think how bored she must get sitting and having to be fed via a tube... We've tried books and the television but I fear we may have to become fairly stern with her soon but I don't want to make the experience any more traumatic or upsetting.

I know it's a long shot but I wondered if any one else on here have children who are fed via tubes and could offer any advice or experiences?

I don't know hold she is but can she have a participating role?

Can she be responsible for holding something or doing any of it herself?

She's 5 years old, because her disability and behaviour is so severe she can't understand the process or comprehend that this is what is feeding her... when she was little she used to like having a pair of latex gloves like us to wear and it took her ages to put them on (enough time to get the milk down the tube without her realising!) but she soon grew tired of that

I might try to get one of the extra tubes and syringes out at the same time and see if she will 'play' or copy what i do with them... must be worth a try! Thanks star

I just don't want it to become a big problem when she's at school as they're already becoming tired of the amount of meds and water she requires and the constant changes to the feeding times as she grows older.

We have not used syringes for daytime feeds for many years - the nursing protocol in this area changed, and instead of the syringes we were supposed to do a gravity feed using the reservoir/giving set that we had for the pump. THis proved to be virtually impossible (as it was so long) that we started putting all the daytime feeds through the pump - this was frowned on at first but then I think the school nurses started doing it too, so it was deemed OK!

So, would putting the daytime feeds through the pump be a possibility if you are given the correct equipment? Obviously it would be harder for your DD to mess about with the feed and ultimately if you can hang the pump in a backpack over the over her chair (or wheelchair??), or maybe she can wear it; it gives her more freedom. The pump can be set at a safe speed to suit. It also means that whoever is with her supervising the feed has their hands free to do things with her as well. The downside is the amount of storage room a load of reservoirs take up!!

The other thing I would suggest is that you do constantly review her feeding regimen - we had regular meetings with the relevant healthcare staff AND ds's teacher/TA (best to get both, in our experience the TAs wouldnt make a decision without the teacher and the teacher wasn't hands on and couldn't answer our questions). At one point these happened termly for ds, but they gradually tailed off and now we don't need to have them at all.

Thanks starfishmummy for your reply.... It's interesting to read how the nursing protocol has changed in your area, we are very much still encouraged to use the syringe method, however It's been mentioned a few times that gravity feeding could be used in the near future.

We've raised the idea of pump feeding through the day, however at the moment she tends to require small but frequent feeds which are digested quickly (usually takes about 10 minutes including flushing etc) rather than being on the bolus pump for 60 minutes.

As for frequently meeting with health staff, we have regular check ups with the nutritionist at our local hospital every 3 months and half termly meetings with the school nurse TA and teacher to discuss changes/ action plans and to see if they feel like anything needs altering.

Our next meeting at school is in 2 weeks time, i may suggest the school nurse to contact our nutritionist if we are still struggling to juggle feeding and her behaviour to ask for advice (That's if i can manage to get them to actually talk to each other!!!)

:)