PEG Users Help!

[Jake2901]

Hi everyone :smile:

I am a student at Loughborough University in the UK studying Product Design and Technology.

I am currently working on a project to design a product to allow PEG users to self-administer their formula at home without assistance.

To help make the final product as good as possible, I would really appreciate your help answering some of my questions:

Do you find it difficult to self-administer your formula?

If so, what parts of the process do you find most difficult?

Any info at all will be greatly appreciated. Thanks :smile:

 

[rose]

Hi Jake,
I could write an entire essay on this.
1) Unless a medicare patient in the USA uses commercial formula instead of homemade blended food they are given no supplies.
2) The syringes available through medical suppliers are labeled single use only and they indeed don't plunge very many times without failing.
3) Many tube fed adults use gravity feed, so the plunger is not that much of an issue, as they are pouring into a syringe
4) That syringe is a small diameter, it makes for a lot of spills
5) If they look for options, the largest oral syringe that they will find is 140ml. Still not that large
6) A man with a daughter with special needs came up with an adapter tip that works on a Playtex Ventaire bottle. That bottle holds 9 ounces, and will work for gravity feeds, but, again, only holds 9 ounces.
7) I eventually, out of frustration, came up with a DIY version of a gravity feed bottle that holds 24 ounces.

There is a huge oversight when it comes to truly addressing the needs of tube fed adults (and children for that matter!)
Don't assume tubefed adults use formula. Some do. The first ingredients in commercial formula are corn syrup, isolated soy or milk protein and canola oil, plus added vitamins and minerals.

I write at length about these issues on my website, and I would LOVE for someone to come up with better methods for adults to tube feed themselves, or tube feed the adult they are carers for.

You can contact me through Tube Chic, and I will be happy to give you more feedback. You can see the examples of the DIY gravity feed bottle, and, also contact information for the baby bottle adapter tip.

I'm attaching the link to the front page of my site, as what you ask about is covered in different sections, just use the tabs to navigate (the main content will be under the "Make Life Easier" tab, and the DIY one.
Welcome! | Tube Chic | Living well with a feeding tube

 

[Jake2901]

Hi Rose

I have already been using your website – it’s been a great source of information in my research so far and I think your DIY bottle is a great idea!

I completely agree that the process is overlooked. I have looked into some of the current accessories that are available, but none of them seem to truly address the needs of the user.

I would really like to ask you some more questions, but can’t seem to find any contact info on your website.

 

[rose]

Jake, there should be a little widget thing on the bottom right that says "contact us" but, I've had others comment it took them a while to find it, so, I added a Contact Form button at the top, right next to the About Me button.

On the subject of solutions, I was so happy with how well the baby food squeeze pouches work, that I ordered some refillable reusable ones from Amazon that hold 7 ounces. It states the port is the standard size that all of the commercial baby food pouches have, and that the caps are interchangeable with them. So, know it will fit extension sets, and should fit the long tube bolus port adapters.
However, the commercial brands are foil, and collapse so there is no reflux back into the pouch. I am not sure if this will be the case with the refillable ones, and if the pouch works to pull contents back into itself again when pressure is not being applied, it's a no go.

Contact me via Tube Chic, and I'll be happy to talk.

 

[affected]

Jake, the thing that makes it most difficult for PALS is losing the use of their hands.

So while a PALS is still doing their own feeds, the problems are difficulty in holding anything, inability to squeeze or push a plunger, difficulty in connecting anything to the small tube hole.

Firstly fine motor skills deteriorate, and managing a peg feed is all fine motor skill stuff.