Does anyones child have PEG feeds or Mickey button Feeds/naso gastric feeds

[dizzy34]

Hi,

I post on here sometimes, my son is very ill with a rare epileps syndrome. My reason for posting today is different. I have been asked by Harrys dietician to do some training for new dieticians on the difficulties in home enteral feeding for parents. Can some of you post your difficulties, either with the feeding itself, getting supplies, working with dieticians/drs, probs with feeding at school or on the move, anything at all. I need to do a half hour presentation if possible so as much info as poss

thanks everyone

Denise

[Sidge]

My daughter was NG fed for 18 months.

The difficulties I found were:

the sheer amount of time it took to feed her, then clean, sterilise and get everything ready for the next feed. When she was on 2 hourly feeds I felt like the end of one, the clean up and expressing then ran into the next!

Feeding when out - nowhere to wash hands (used alcohol gel) and other people staring.

As she got older, having to frequently replace the tube. Nightmare.

[dizzy34]

Thanks so much for that its really helpful.

Denise

[saggarmakersbottomknocker]

dizzy my dd was ng fed for about a year.

I'd say my experiences were similar to Sidge.

I couldn't do my dd's NG tube changes. I've had one myself and I hated putting her through that. I had fantastic community support though and the district nurses would pitch up and reinsert for me at very short notice.

dd has cardiac problems and I had issues with some dieticians who didn't understand the issues in that respect. Generally hardworking hearts need loads more calories and lots less volume than you would expect. One tube fed child isn't necessarily like another.

I got used to people staring but in that respect may have preferred a PEG as your child's 'problems' are publicly displayed with an NG. Sometimes you could just do without the stares.

Also some professionals thought when you were ready to pull the tube and do without that it's an easy step. It's not - the tube took away lots of worries for us around dd getting enough calories and her meds too as they all went down it. Suddenly you are without that 'security' I suppose and I needed a lot of support with the weaning process which I don't think I got.

And we had some fun nights when I pump fed the bed too Very messy.

[Sidge]

Oh god yes, I had forgotten to mention the mess when it leaked!

We didn't have a pump so had to sit and hold it. (They never offered a pump and I can't believe I didn't ask for one - hindsight is a wonderful thing...) I used to tape the syringe to the side of the cot so at night I didn't fall asleep and drop the syringe. But sometimes the tubing came off the syringe and there was bloody Nutrini everywhere - thick, brown smelly stuff! I still can't get some of the stains out of the wood, or the walls where it dripped down.

[saggarmakersbottomknocker]

We only got a pump because I completely lost the plot one morning Sidge. dd was having something like 30 mls 2 hourly through the night and with two other kids under 5 and a dh on nights I was seriously sleep deprived Why we didn't get one from the outset I don't know.

[Sidge]

It's mad isn't it, no-one thinks to offer one!!

I had DH away at sea, DD1 at school (so no lie-ins for me) and DD2 on 2 hourly feeds, and I was expressing for her. Her reflux meant it took aaaaaaages for the feeds to go down, as well as all her meds and no-one thought to say here, have a pump and sleep!

It was only when we saw the dietitian who changed her to 3 hourly feeds and gave us Thick-It for the milk that I actually got back to bed between night feeds instead of dozing at her cot!

I look back now and wonder how I got through it really!

[saggarmakersbottomknocker]

There you go then dizzy - No1 - offer a pump!!

We had Maxijoul and Calogen for dd's feed Sidge - you could stand a spoon up in it, it was so thick. I had to force it down by syringe cos it was too thick to gravity feed. When it came back - which was often, it was vile to clean up. And when she had Sytron iron supplement the smell was appalling.

Glad it's a distant memory

[dizzy34]

Thank you so much. Its really useful.

Denise

[mulsey]

My daughter had a NG tube for 8 months, and has had her peg for the last 4 months.

The trauma with the NG for me was horrific. We could never find a tape that would keep it in place on her face, it was forever moving. The monthly change of tube was so hard as a parent to watch, I would have to pin my daughter down so the nurse could change it! Our local hospital werent able to pass the tube, and we would have to travel much further to the childrens hospital where they were able to repass it.
That NG tube was just a constant source of worry and stress for me, and although it really helped, it took its toll on us all.

The peg is better, because there are no more strange looks. We cant get out of the bit with the over-granulation though, and somewhere in the past 12 months, Ive become a nurse and no longer just a mum.

We got a pump without even asking for one straight away. Our health visitor is a great help with syringes etc. Although, there are so many different types of syringes with different tips - how are we supposed to know that?

Good luck with your presentation

[potoftea]

My ds had an NG tube for about a year before he had a peg fitted. The problem with the NG tube was that he would cry so much at times that he would vomit, then the tube would come up, and we'd have to put a new one down. But he'd be crying and gagging so much it wouldn't go down.

Also no matter what tape we used on his face to hold it in place made his skin sore and red.

And can totally agree with the tube coming undone and feed squirting/pouring everywhere.

[supportman]

One problem that I have encountered is with using PEG feeding to supplement oral feeding, and difficulty in getting them to take oral food/fluids as not hungry or thirsty. Esspecially in the morning after an all through the night slow pump feed.

Also I have heard of the balloon bursting on a mic-key button and the thing coming out!