Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Neocate Advice, Help, Or Stories Needed


  • Please log in to reply

9 replies to this topic

#1 AllForEmily

 
AllForEmily

    New Community Member

  • Members
  • Pip
  • 5 posts
 

Posted 09 May 2006 - 10:16 AM

I am very new here, and we don't have a diagnosis on what is causing my 13month old daughter's GI issues. She has been on Neocate Infant formula since she was 10months old, and she is finally gaining and growing well. The problem is that the manufacturers of Neocate changed this formula very recently, and very soon we will not be able to get any of the old formulation from any source. Emily cannot tolerate the changes to Neocate, and we have had no success changing her over to Neocate One+ or even EleCare.

If your baby/child is having issues with the new Neocate formulation or you know someone who is having issues, please let me know. The manufacturer rep told me they will NOT be making the old formula anymore, and they implied that my baby was one of the only ones not able to toleratet the new version. I just don't believe that!

I am begging for help here. I just don't know what we will do for Emily once the very limited supply of the old version of Neocate is gone.
  • 0

Celiac.com Sponsor:

#2 Tony'sMom

 
Tony'sMom

    Community Member

  • Advanced Members
  • PipPipPip
  • 49 posts
 

Posted 09 May 2006 - 11:51 AM

Threefly, is that you?

It's Amyd from the other board. I've seen your posts about DB but don't have any advice for you. I hope you get the answers you need soon!
  • 0
Amy

Tony age 6
diagnosed with diabetes at age 1
diagnosed with celiac at age 3

positive blood work
inconclusive biopsy
positive genetic markers

*Special Needs Mom*

#3 Fiddle-Faddle

 
Fiddle-Faddle

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,159 posts
 

Posted 09 May 2006 - 12:48 PM

I'm so sorry to hear all the trouble you're having. I have no experience with Neocate, but there are so many moms with celiac who breastfeed, I wonder if one might be able to pump some milk for your daughter (and if the mom has celiac, you'd know that the milk would be gluten-free, right?).

There are a few mother's-milk banks in this country--5, last time I checked--but you might have better luck getting in touch with someone from the LaLeche League. For something like this, where your daughter's life depends on it, you just might be able to find someone who lives near you who is willing to help.

Also, if you did breastfeed her yourself, you can probably relactate with a pump--it sounds horrible, but it's really not so bad!

The only other thing I can think of is to call the maker of Neocate and beg (and have your daughter's pediatrician call them , too).

Sorry I can't come up with anything else. Good luck!
  • 0

#4 AllForEmily

 
AllForEmily

    New Community Member

  • Members
  • Pip
  • 5 posts
 

Posted 11 May 2006 - 05:23 AM

Hi Amy! Yes, it is me! My desperation is oozing to all parts of the internet!

Alison--I answered your other post, and I am going to call about relactating and/or milk banks. Thanks for the suggestions!
  • 0

#5 TCA

 
TCA

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 926 posts
 

Posted 11 May 2006 - 08:14 AM

My daughter has some severe eating issues too. We have tried every formula except Neocate (That's next). We have tried Elecare unsuccessfully too. My daughter has a heart condition, celiac, and a feeding tube. The drs. forced formula on her because they wanted more calories than breast milk could provide. She just got sicker and sicker until I took her off of all supplements and went on a gluten-free diet myself and pumped for her. The difference in her was amazing. If you can relactate at all I would strongly urge you to do so. I'm an engineer, and very analytical by nature. I have even done charts and graphs of her weight and diet to prove to the doctors that this is working. They are amazed at how well she is doing now. Last month I started pureeing avocado and mixing it with the breast milk for fortification. This caused constipation, so I added Gerber Prunes and this mixture is working great. This is only for the feeding tube, so no I don't make her eat that! :) During the day I give her breast milk with a little rice cereal for extra calories and vitamins, but she couldn't tolerate that until I went gluten free. She will be 13 mos. next week. Trust me, I know what a pain pumping is, but the difference I see in her is so worth it. I breast fed my son until he was 20 mos. because of GI issues and never regretted it.

I have some breast milk in the freezer from before I was gluten free. If you want iut you are welcome to it. I don't know where you live, but I'm in Alabama. I just can't bring myself to throw out that liquid gold! We don't have any banks close to me. I know you don't know me and you're welcome to have it tested, but I am a clean freak and disease free, unless you count celiac, which is not transferred by breastmilk! :P It would not be gluten free though. I was not gluten free with my son and he did fine, but my daughter had open heart surgery at 9 days old and her issues were more severe.

Just let me know if you want it and we'll figure out a way to get it to you!
  • 0
If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#6 AllForEmily

 
AllForEmily

    New Community Member

  • Members
  • Pip
  • 5 posts
 

Posted 11 May 2006 - 09:22 AM

Thank you! Since we are not sure about celiac, I'm hesitant to try anything that is not gluten free.

At one point, the GI dr was thinking of a feeding tube. Pardon my ignorance, but would this help Emily tolerate this formula, or would they try an entirely different "food"?

Before you try Neocate, you might want to know this: The latest news I got from the Neocate people is that the old Neocate had a combination emulsifier: soy licithin and DATEM (Di-Acetyl Tartrate Ester of Monoglyceride). The new Neocate infant has an entirely different emulsifier called CAEM. Neocate Jr and Neocate One+ both have DATEM. Elecare uses DATEM.

I am convinced that Emily's reaction has something to do with the emulsifier. Nothing else makes sense!
  • 0

#7 TCA

 
TCA

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 926 posts
 

Posted 11 May 2006 - 11:37 AM

Thank you! Since we are not sure about celiac, I'm hesitant to try anything that is not gluten free.

At one point, the GI dr was thinking of a feeding tube. Pardon my ignorance, but would this help Emily tolerate this formula, or would they try an entirely different "food"?

Before you try Neocate, you might want to know this: The latest news I got from the Neocate people is that the old Neocate had a combination emulsifier: soy licithin and DATEM (Di-Acetyl Tartrate Ester of Monoglyceride). The new Neocate infant has an entirely different emulsifier called CAEM. Neocate Jr and Neocate One+ both have DATEM. Elecare uses DATEM.

I am convinced that Emily's reaction has something to do with the emulsifier. Nothing else makes sense!



i don't know what all of Emily's issues are, but a feeding tube is more for kids who need LOTS of calories or kids who refuse to eat. There are some enteral (tube only) formulas out there. Compleat Pediatric (yes, that's how it's spelled) is one they tried for Megan, but she projectile vomited it like she did everything else. It is gluten free, but she couldn't handle it. The tube has been great for megan, but she requires so many calories that she just can't eat enough in a day to reach her goal. Plus she has some sever gagging and choking issues that prevent her from eating baby food so far.

Have you considered relactating? I know it's a pain, but it's the only thing that has worked with Megan. I would offer to share some gluten free milk, but I'm only a day ahead of her and can barely keep up. sorry!

We started of with an NG tube, then did NJ and finally got the G tube. I wish we had started with the g tube. The others were horrible experiences.

Let me know if I can help in any ay.
  • 0
If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#8 Guhlia

 
Guhlia

    Ah yes.... Happy New Year to all, Red Bridge style... LOL

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,541 posts
 

Posted 11 May 2006 - 12:25 PM

Wow... I can't believe they're changing the Neocate formula. That stuff was a GODSEND for us with our daughter!!! She had bloody stools with every other formula we tried. Before the old formula is completely obsolete, I would recommend checking eBay for cans of the old formulation. We bought our daughters formula on eBay for quite a few months before our insurance agreed to cover it and we never had a problem. I know this seems risky, but it was really our only answer and it's about half the price then of the drugstore prescription.

Best of luck to you!
  • 0
~Angie~

Gluten free since May 2004

#9 Guest_tracey and emma_*

 
Guest_tracey and emma_*
  • Guests
 

Posted 12 May 2006 - 01:01 AM

We have had neocate for 2 years now.. even get it here in germany. i had not been told they were changeing it.
does anyone have any idear when it is being changed. It could make a huge differance to emma as well.
I have not noticed any differance so far but we are increaseing to strenth so an now a little conserned.
i will ask on my support group as well, see if any of the mums there have heard anything. will let you know
tracey
  • 0

#10 sarahjo

 
sarahjo

    New Community Member

  • Advanced Members
  • Pip
  • 22 posts
 

Posted 13 May 2006 - 04:34 AM

hi i have daughter that gets neocate plus through her g-tube. she seems to tolerate it well, i have never tried the other kind. we were on nutramigin, but it contains milk. (she is allergic) it is very expensive. well i wish you good luck.
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: