Switched from Pediasure to real Food....help!!!

JoyR
  • By JoyR · December 6, 2009 at 3:35 am · 24 replies
  • In Home tube feeding (HEN, enteral nutrition)
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My son is 7 and has had a 14 fr G-peg since he was 1. He's been fed only Pediasure for 6 years! We have recently detoxed him from this "food" and have got him on the road to recovery! We give him pureed food, but have difficulties passing it through the current size peg...with a continuous feed system. Would greatly appreciate anyone's advice and experiences increasing peg size and bolus feeding. I imagine that continuous feeding is out of the question due to the thickness of the food. Please help...we are facing some serious nutritional challenges and weight loss!!!

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24 replies   

nikki242

Have you gone to this website?

http://www.mealtimenotions.com/HomemadeBlendedFormulaHandbook.htm

Or read the book?
Homemade Blended Formula Handbook
by Marsha Dunn Klein, MEd, OTR/L and
Suzanne Evans Morris, PhD, CCC-SLP

What sort of blender are you using? I mean, you could go up on the french size of the PEG, a 14 is kind of small, but dilating the stoma can be rather painful. May want to try move of a high powered blender and a different proportion of liquid to solid food that is being blended.

This is the recipe someone I know who does the blended diet uses...
3/4 cups grapes
3/4 cups whole cranberries
1 1/2 cups lettuce
5 oz turkey (from Thanksgiving)
2 1/2 cups of brown rice (slow cooked)
2 cups soy milk
4 tsp flaxseed oil

and I believe they use a Vitamix blender.

JoyR

Thanks so much for the website and recipe! I'll check out the site and in the meantime am trying to reach my son's doctor to discuss increasing the gpeg size. Although, I am worried about dialating the stoma. Does your friend use a continuous feed system or bolus??

JoyR

Oh, by the way, I'm using a Braun (wand) hand held mixer then a strainer..to make sure their are no pieces left to block the feeding bag and/or peg. I'm in Greece and am not sure if a Vitamix blender is even available. Definitely something to look into!

nikki242

She does boluses during regular mealtimes I believe.

Look on Ebay. And I think that they will give you a discount if it is for medical purposes. Don't know how that all works in Greece.

I've heard that other commercial grade blenders work, but not quite as well as the Vitamix.

momto2girls

My daughter used a blended diet for a few years with an 18 fr Mickey and a Zevex enteralite (later, infinity) pump. You can usually go up one french size (12 to 14 or 14 to 16) without actually dilating the stoma, I did this with my daughter's J stoma, actually going from a 14 to an 18 with very little trouble, just a little pressure. Of course talk with the Dr, you'll need to get a script for a larger size anyhow.
As far as the blended food, we initially used a regular blender and just strained the mixture through a fine mesh strainer. Later we got a Vitamix blender and it made it much easier to blend and make it a better consistency for the pump.

JoyR

We are doing exactly that...blending and straining through a fine mesh stainer. However, we're using the Abbott , Flexiflo Companion pump. The bags do not accept a very thick mixture. We are watering it down to pass through. Can you tell me more about the pumps? The manufaturers, etc. I live in Greece and sometimes have to look abroad for things. For the pump, I would have to find it in Europe because of the voltage. Also, how do you manage the caloric content and nutrition? Besides a doctor or nutritionist are you referencing books, etc.? Thanks for you help!!!

Liba

You wouldn't necessarily have to find the pump in Europe, just a plug adapter. We use both the Zevex Infinity with a plug adapter and a Nutrica Flocare Infinity which comes with an British (two circular prong) plug. They are almost the same pump, they have some different features but they use the same plug.

The Nutrica pump does not do interval feedings, which was very frustrating for us, but it does have an auto prime button (push it once and it fills the tubing to the end) which is great.

There is a Nutrica Flocare pump on Ebay now, as there often is. I bought mine there and it was brand new, never used, on arrival.

momto2girls

When I did a blended diet with my daughter I just blended regular food---I feed my other daughter, so I just would blend food that we were eating ourselves, meat, veggies, fruits etc add milk or water or juice to it all and call it good. I would add peanut butter for added calories, oatmeal for more fiber, whole wheat bread etc. I didn't measure calories or vitamins, just trusted that I was feeding my other family members, we were healthy, so I could feed my daughter through her tube. If she hadn't been gaining I would have done something differently, but she started gaining on the home blend formula where she had not been on the canned formula, so I was happy.
Now, if you child has other medical issues that would necessitate more close monitoring of nutrition then it might be necessary to measure more carefully.
I am just of the opinion that if she were able to eat by mouth I would be trusted to feed her appropriately, so I just decided that it was not necessary to add more stress to things by measuring each and every calorie and vitamin that went in her. Sorry, did't mean to ramble!!!

nmhusky

JoyR,
I don't know what dietary issues your son has but I feel great since I switched to real food some 18 months ago. I eat all the foods that I ate before the tube. I am bolus (1 liter) feeding using a syringe 3 to 4 times a day. I am not sure if the pumps out there can handle real food. I use a Blendtec blender and just blend way past puree. I know that the VitaMix blender works well also.

I found out that as the french size goes up the actual inside diameter of the extension/tube system stays constant. I am using an AMT Mini One button with balloon and Kimberly Clark extensions. I do not know what other tube choices are out there.
Steve

Zeka

how can going up a french size help get thicker food through? our MDs covet the small stoma size and will only go beyond a 14fr for leaking.

from all I can see, the connection site valves are standard~no matter the fr size~the bolus blue top connecting tube is the largest for Mic-Key system I can find~please tell me if a 23fr has a bigger port system!

The MD's have made these great stomas and the use of them is limited by the few products on the market.

Where is my fatty tube (without going retro with the stitched in hose)? I need a pill port and if removing the device is my only way to go, then make a valve to the balloon that is reusable (like twice a day use which will break it in about two at my house).

I got to go to the focus group in SF that was testing new ideas for skin level systems, but the trend is not to customize a tube, but keep the "one style" approach and trick the parts a bit (valve port size even smaller if you can believe it).

I am more frustrated with the current tubes after that focus group~'going to have to make one ourselves.

Juhint

Actually if you have a peg-tube or g-tube going up a size also increases its diameter. It's just for the buttons that the connection site valves are standard.

JoyR
  • By JoyR
  • Reply 666090 · In reply to 652996 by nmhusky
  • December 17, 2009 at 12:43 pm
  • Report post

Dear nmhusky,

Thanks for your reply! Things have been a bit hectic and am just now getting around to replying!! Tell me more about the type of food you're blending. Basically, my biggest concern is meat. Are you eating meat and are you able to blend it to a pureed consistency...without pieces?? I'm now on the market (in Greece) for a blender. I know the Vitamix works, but it's crazy expensive. If the Blendtec works just as well, maybe it's a cheaper option. Of course peg size sure makes a difference!! Thanks for getting back to me when you can.

nmhusky

JoyR,
I eat meat through my AMT Mini One Button w/balloon. The size is 16fr x 3.5 cm. The size is only important for the outside diameter not the inside diameter. The inside diameter is limited by the extensions. And as far as I know the ID is the same for all the Mic-Key and AMT button compatible extensions. I sure wish they would make them a little larger!

In reality my food is blended way past puree. It is liquefied. I have heard that VitaMix will discount their price with a Rx from your doctor. I have not tried because I am happy with the Blendtec. By the way the Blendtec costs about the same as the non-discounted VitaMix.

Breakfast this morning was an English muffin with butter and honey, one poached egg, coffee, yogurt, and some oats thrown in for good measure. For lunch today I will have leftover pork chops, edamame, baked potato with sour cream salt and pepper. For dessert I baked a cake and will trown in some ice cream and hot Sleepy Time tea.

All of my food is blended to a liquefied consistency and relatively thin. Maybe about as thin as a warm milkshake. Much thicker than ensure but thinner that pancake batter. In the summer I cool the food down with ice. In the winter I tend to warm the food using soups and teas. You don't want the food too hot or too cold. Just about Mama Bear temp!
Hope this helps,
Steve

JoyR

Steve...I have to tell you...your diet inspires me..LOL!!!! I'm so much more inclined to experiment now with my son...a little cake....a little ice cream!!! Tell me something, and sorry for bombarding you with questions. My son isn't able to speak, so I don't get a lot of feedback! Do you get a feeling/sensation of being full on the liquified diet? How quickly are the feeds and do you ever actually "taste" the food without it actually entering your mouth??
Thanks!!
Joy

prettykitty

When they upped me from a 12FR size GJ tube, they dialated the site, so a 22FR tube would fit. This way, the bigger tube would stay in my intestine better and could also be used for blended foods down the road (such as baby food). They sedated me to do this, because they told me that it hurts a bit to dialate the tube site.

I don't eat any meat except fish, due to my stomach not digesting other meats, and my caregiver fixes it to where its really flaky, so its much easier for me to digest. There are some fruits and vegetables that I have to eat the baby food types, because they get digested easier and don't aggivate my gastroparesis. Recently, I bought a homemade baby food kit, that came with a book, 2 ice cube trays with lids, and a baby food grinder. I tried it the other day with some cooked apples and it works good. I got it from Babies R Us, but I have also seen them on the One Step Ahead website and on Ebay.
Just thought I'd let others know about this if they do blended foods or have to eat ground up foods.

Jessie

ChloeRose

HELLO,
Have you tried a blenderized diet with a special blender such as a vita-mix with added water to puree. The Kangeroo feeding machine is the machine to use in this case .The downside is that it is bigger then the Infinity which is not powerful enough for a blenderized diet. The company that makes Vitamix machines offers a special discount. Also you could ask the dietitian where you receive your tube supplies for ideas on this matter. I have read good feedback on line with children on blenderized diets.

ChloeRose

HELLO,
Have you tried a blenderized diet with a special blender such as a vita-mix with added water to puree. The Kangeroo feeding machine is the machine to use in this case .The downside is that it is bigger then the Infinity which is not powerful enough for a blenderized diet. The company that makes Vitamix machines offers a special discount. Also you could ask the dietitian where you receive your tube supplies for ideas on this matter. I have read good feedback on line with children on blenderized diets.

JoyR

Jessie, thanks for your comments. Did you experience any discomfort in the stoma area due to dialation after the procedure?

JoyR
  • By JoyR
  • Reply 670975 · In reply to 670839 by ChloeRose
  • December 22, 2009 at 6:13 am
  • Report post

Hi CloeRose,

Thanks for the info regarding the pumps. I'm in the process of placing an order with Vitamix for a blender and would also be interested in finding a pump that has the ability to handle purees foods....if such a pump exists. We have the Abbott Companion pump right now...which we use for liquid. I'll check out the Kangaroo on line as see what I can find out.

Joy

sadenis
  • By sadenis
  • Reply 671013 · In reply to 670841 by ChloeRose
  • December 22, 2009 at 7:31 am
  • Report post

Regarding ChloeRose's comment about the Kangaroo pump being better than the Zevex Enteralite Infinity for handling blenderized diet, I would have to disagree. When my son has been hospitalised for various procedures, we have always had to use our pump, because the hospital supplied Kangaroo pump could never push the mix through. I have heard from other sources, on Oley, that the Enteralite Infinity handles thicker liquid diets better. We have been exceedingly pleased with the Enteralite Infinity and it is so small and portable and stays charged for two days easily if you forget to charge it overnight.

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