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Veteran
Posts: 209
Location: Green Bay, Wisonsin | Hello,
As many of you know Hope came home today!! We had to change her mic-key button to a smaller one, she lost some weight again, which will take at least 1-2 months to gain that all back. Not sure how much.
My husband and I are having trouble deciding on what to do to help her gain the weight back and too gain more in the future. I have read some past posts and noticed some of you us Boost Plus, Ensure Plus and Pediasure. Does anyone know if these are safe for a mic-key button. I couldn't find anything about tube feedings on any of these products. Right now Hope is on Kindercal, which when she is upset she does throw it up. Also does anyone have possible recommendations for any medications. I want to be as prepared as possible, b/c my husband is going to set up an appointment with the GI doc soon. Any help would be great!!
Thanks
Stephanie and Jeff |
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Expert
Posts: 3970
   
Location: Plymouth, Pennsylvania | STEPHANIE,
ZOE TAKES "PEDISURE INTERAL"...IT IS MADE FOR TUBE FEEDING, BUT FOR WHAT EVER REASON T ZOE HAS BEEN GETTING IT NOW FOR MANY YEARS BY MOUTH...THEY HAVE USED IT IN NG TUBES FOR HER FROM TIME TO TIME IN THE HOSPITAL AS WELL....AND BELEIVE IT OR NOT, IF WE RUN OUT FROM OUR SUPPLIER AND I BUY OVER THE COUNTER, SHE KNOWS THE DIFFERENCE...
THEY ARE ALIKE BUT ARE TWO DIFFERENT FORMULAS...HOW I KNOW THAT IS I CALLED THE COMPANY WHEN ZOE KEPT INSISTING SHE COULD NOT TAKE THE KIND "IN THE BLUE CAN"...
SHE LIVES ON THIS STUFF, IT IS ABOUT 95 PERCENT OF HER DIET...SHE STILL TAKES VERY LITTEL FOOD...
I THINK THE GI WILL BE ABLE TO POINT YOU IN THE RIGHT DIRECTION AS WELL...
GOD BLESS...WE ARE KEEPING HOPE IN OUR PRAYERS... |
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Veteran
Posts: 111
Location: Edmonton,Albert | My girl has a Mikey button 5.0 (i think) I'd have to look to be sure. The same size as at 1 year old. She has pediasure plus with fiber and have no problem with getting it through the tubing. we use the kangaroo bags and just go bolus. The only problem we face is that the fiber makes the formula thicker so we have to re-do the rate of flow often till we find the sweet spot.
On a side note, Jordyn went from 23pounds to 31 in 5 months with getting a higher calorie formula. We had to monitor her gain very closely because that was just to much for a small girl. Her food in tack was cut by 1/3.
Good luck
Michelle |
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Elite Veteran
Posts: 952
Location: SanAntonio TX(formerly Hammond Indiana) | Most of the formulas like Pediasure, Ensure, etc, are marketed and labled for "oral" and "enteral" ( tube) use becuase most insurance companies wont PAY for the stuff if it isnt labled that way. When Brianna wa son pediasure, they stopped paying for it when I got it thru WIC because it wasnt labled for "enteral use" Then, Ross got smart and started labeling it and packaging it under " enteral use" and the ins payed for it.
totally stupid, but its both the exact same stuff.
also, when ins pay for it now, the usually have it sent to you in monthly amouints, and they usually send the "enteral" one.
like I said tho, there is no difference.
The few that are only for tube feeding, like Peptamen, and Peptamen Jr, are labled a ssuch, as they are pre-digested and taste nasty anyway, and arent meant for oral use.
You can put just about anything down a G-tube or button that you cna put in your mouth, as long as its ROOM temp or warm, as your mouth and esophogus cool it on the way down and tube feeds are direct.
anyway, Im getting off the point here.
HTH |
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Extreme Veteran
Posts: 370
Location: Maine | Paige is on Peptamen Jr through her pump. And it is now made for both enteral and oral feeding. Yes! It comes in vanilla flavor! Paige has NEVER had it orally, and although her gastro doc wants her to have it instead of milk if she wants to take anything orally, I will never make her. I've never smelled anything so gross before in my life. Finally I've convinced our medical supply to deliver the unflavored kind, thankfully that doesn't smell hardly at all.
Anyway, that was not my point...
I wanted to respond because I really think you should talk with a nutritionist about what is best. Some things are good for one child that may not be for others. Peptamen Jr. is best for Paige for many reasons, mostly because of her liver issues that keep her from being able to break down and absorb fats properly. Like Jennie said its already partly broken down. She has done so well on the Peptamen Jr. that she actually started gaining weight too quickly and her gastro doc asked us to back off on the amount we give her.
We have an incredibly hard time with Paige's tubes breaking down and getting holes in the balloons. We haven't pin pointed the root cause, but her mic-keys fall out about once a week. (this was tough getting insurance to cover them) We think it may be one of the medicines we give her, or one of the topical medicines we use around the outside (she gets yeast all the time), anyway I honestly don't think it is caused by the formula at all.
Edited by klent15 2007-04-17 11:16 PM
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