Misconceptions: NeocateElecare

[hellbennt]

The following was a post on the yahoobreastfeedingreflux board & I emailed the author & asked if I could post it here. she said:

Absolutely!! Feel free to use anything I post. You don’t have to ask. Keep up the good work!! Traci

In a message dated 7/12/2006 6:44:44 AM Mountain Standard Time, Hellbennt writes:

Misconceptions about how Neocate and Elecare work

Posted by: patriotswife

Tue Jul 11, 2006 3:20 pm (PST)

After catching up on reading the archives I found that there seems to be a common misunderstanding about how the Elemental Formulas Neocate and Elecare
work, so I hope I can shed some light on both of these outstanding formulas.

First, I feel it is important to talk about the usage of these formulas. They are very different in nature from the common formulas you can purchase at the super market and cannot be used or interchanged the way you would regular
formulas. The most obvious difference is cost. We all know that these elemental formulas are outrageous and some insurance companies do not cover them.
Fortunately, as medical community’s realize the need for these formulas, insurance companies and state legislatures are coming around and more and more are covering most, if not all, of the expense.

The next most obvious trait of these formulas is their unique taste. I know some of you are saying, “unique…what is she talking about…they are horrible!” You are absolutely right, they are in fact HORRIBLE! For this reason, it is impossible to treat Neocate or Elecare as a super market formula and just offer it to your baby in their next bottle. As a rule no formula, including super market formulas or breastmilk, should be automatically switched. You are asking for GI upset by doing so. Neocate and Elecare are better taken when slowly introduced, mixed with whatever your baby is currently taking. If you are bf’ing then the best thing to do is pump and put your breastmilk into a bottle. Start very
slowly mixing the new formula and gradually increase the amount each day (not each feeding) until they are on 100% of the elemental formula.

The same rule applies to store bought formulas. Start slowly and the transition should go very smoothly. The younger the baby the easier this transition is, since their taste buds are still maturing. My son was breastfed exclusively for six
months and then we added Soy Isomil, which is still a sweet tasting formula. We transitioned him onto Neocate one+ at one year of age, by using the method I just discussed. In older children, which really isn’t an issue for this group, but worth discussing, parents start with tiny sips and gradually work up to the amount they need. If done correctly almost all children younger than one year of age will make the transition. Unfortunately, older children sometimes require feeding tubes (simply b/c of taste aversion to the formula),
but in general those are much, much older children.

One other important factor is that these formulas are best given in a bottle because the long nipple pushes the formula past their taste buds and it prevents them from smelling
what they are drinking. It’s no different than you holding your nose in order to get something disgusting down.

The next important factor to discuss, regarding these formulas, is how they work. Store bought formulas and breastmilk are 100% nutrition. Neocate and Elecare meet all the nutritional requirements that your child needs, however,
their design is meant to repair GI tissue. This doesn’t happen overnight or even in a couple of weeks, so if your baby is still spitting up after a month on one of these elemental formulas you cannot give up. In order to explain this, I have to stop for a minute and address the issue of food allergies.

Unfortunately, the term allergy is being loosely used in the medical community and among parents today. I have read many post which state, “my doctor wants the baby to go on Neocate or Elecare b/c he thinks she has an allergy.”
They don’t mean an allergy like a food allergy. What they are saying is that they think your baby has a problem with the “complete protein” found in some or all foods. When we think of food allergies, we think of hives, anaphylactic reactions and possibly GI upset. An allergy (I’m using that loosely) to the “complete protein” responds by damaging cells in the GI tract. This cellular damage can result in reflux (GERD), vomiting, diarrhea, refusal to eat, bloody or mucousy stools, different colored/textured stools and stools with horrible odors. These are just a few of the less serious symptoms cellular damage can cause. More severe cases result in erosion of the GI tract, fistulas, furrowing of the esophagus, and in some cases cancer. When there is
cellular damage involved, medications and/or surgical procedures like Nissen Fundiplications only temporarily cover up the symptoms. They do not treat the underlying damage or the problem that is causing the damage.

Elemental Formulas like Neocate and Elecare do treat the damage and sometimes the problem. So, the next time a doctor suggest to you that your child go on one of these
formulas b/c they believe they have an “allergy”, please ask them to explain exactly what they mean by the term “allergy.”

Now, with that out of the way, I can explain how and why these formulas work. Since the issue is the “complete protein”, Neocate and Elecare have removed that factor. Both of these formulas are made up of 100% free amino acids. In layman’s terms amino acids are the building blocks of protein. In other
words, they are the tiny pieces that make up the complete protein molecule. By breaking the complete protein down into it’s individual amino acids the body is able to process them. So in general what happens is the body begins to
heal once the “complete protein” is removed. Unfortunately, since there is tissue damage, this process does NOT happen over night. It is not just a matter of removing the “allergen” and seeing results, your child’s GI tract must be allowed to heal. How quickly you begin to see a difference in your child
depends on how bad the cellular damage is. On average, the leading specialists, have determined that it takes 2-3 months for the GI tract to heal itself. So, when you are prescribed one of these formulas you have to understand that you will likely not see immediate results b/c they are not being used for
the same reason as a store bought formula is.

If a child is lactose intolerance or has a milk allergy then you can switch from Carnation Good Start to ProSoBee and see almost immediate results. Elecare and Neocate are an
entirely different class of formulas, used for different reasons and they take time to work.

So in general the most important things to consider when being switched to one of these formulas is that it takes time to transition from what you are currently feeding them to Elecare or Neocate and that you will generally not see
immediate results. Patience is required in both areas.

It is also important to know that not all cases are “allergen” related. Some children have cellular damage which is believed to be as a result of the “complete protein” when in fact it is the body attacking itself due to Autoimmune problems. Children who have cellular damage as a result of the “complete protein allergen” will heal while on Neocate or Elecare exclusively. Those children who do not get better are believed to have some kind of Autoimmune issue and require medications which suppress the immune system in order to eat. It is possible to have both allergic and autoimmune disease.

I hope this information is helpful and gives those who need it insight into why Neocate or Elecare are prescribed and how/why they work (or don’t work). I am not a medical professional, so I encourage you to take this information
and discuss it with your child’s Physician. The information I have provided here is definitely not a substitute for medical advice, however, I am happy to try answering any questions you have. Please feel free to post a reply or
email me privately. If I don’t have the answer I will do my very best to get it for you.

I apologize that this turned into a book 🙂

Traci
Cody (6) Eosinophilic Duodenitis, Asthma, Eczema, Gastroparesis
(DGE), SA’s and a few FA’s, Hypotonia and Hypermobile throughout.

[Anonymous]

That is really interesting Laura. Tyler took 6 weeks to heal on Elecare, I agree it certainly isnt an overnight process. The terminology is interesting too – before we started solids he was diagnosed with MSPI and then once we had reactions to solids it was changed to MFPA – Multiple Food Protein Allergy. No matter what they call it, its nasty

[Anonymous]

Yes, very interesting! I bet most docs don’t even know all that.

[hellbennt]

Ok, this post stirred up quite a bit of controversy over at the yahooboard…AND more interesting facts came up, so here’s more:

1) a mom replied & said it sounded like she was an advertisement the for formula companie and basically asked how dare she post something like that on a breastfeeding reflux board

2) next mom replied

3) here’s what Traci replied (I’m ‘allowed’ to use her posts) Purple empahsis is mine:

Re: Misconceptions about how Neocate and Elecare work patriotswife Wed Jul 12, 2006 1:54 pm (PST)

__, for the most part I agree with what you are trying to say,
especially that Breastmilk is best, when it is possible. Thus the
reasons I breastfed both of my children until they were literally
dying and had to go on Neocate one+ to avoid the “complete protein”.

There is absolutely nothing you can do to breastmilk to eliminate
the “complete protein”. I guess I am a bit puzzled by your message
since my posted was directed at those who have tried one of these
Elemental formulas without success or who are looking at having to
try them, as a result of having babies that need to avoid “the
complete protein”.

It wasn’t an argument against breastfeeding nor
was it a promotion of formula. It was also specific to Neocate and
Elecare which are prescription formulas. The issue of the “complete
protein” is a rapidly rising problem with babies today and
unfortunately, how to treat it is very, very misunderstood.
Actually, there are only literally three specialist in the entire
world who completely understand it and how to diagnose and treat it.
So, even though you are correct that this is a breastfeeding group,
b/c it also deals with reflux I felt this information was needed.
Especially since Neocate and Elecare are so misunderstood even by the best of physicians.

Unfortunately, when dealing with cellular damage as a
result of a babies body seeing the “complete protein” as a foreign
invader, there is nothing that can be done to change breastmilk to
make it safe.

My post was only directed at helping those individuals understand why they are being told they need this unique prescription formula and how the formula works.

I am sorry that you saw my post as a personal attack on
breastfeeding. It was anything but and I don’t believe I even
implied such. Neocate and Elecare are very, very special formulas and shouldn’t be lumped together with the attitude towards store bought formulas. I wouldn’t have addressed the issue if there were not members here who needed the information. I promise I am not trying to suggest that anyone stop breastfeeding. It broke my heart in two, when I had to stop and it took along time to convince me that there wasn’t something wrong with me that had caused my babies to have the problem they do.

Warmest Regards,
Traci
Cody (6) Eosinophilic Duodenitis, Asthma, Eczema, Gastroparesis
(DGE), SA’s and a few FA’s, Hypotonia and Hypermobile throughout.

*****************************************************************
Gunnar (5) Eosinophilic GastroIntestinal Disease, Hypertrophic
Cardiomyopathy, Ventricular Septal Defect, Neutropenia, Eczema,
Asthma, Multiple EA’s, SA’s and IgE Mediated FA’s, Dermographism,
severe oral aversions, Geographic Tongue, Neocate 1+ by bottle
exclusively.http://www.caringbridge.org/co/cody_and_gunnar/

4) then there were some more posts…

then Traci:

Re: Misconceptions about how Neocate and Elecare work Posted by: patriotswife Wed Jul 12, 2006 2:55 pm (PST)

<baby being allergic to breastmilk is so out there, not to say it doesen’t happen but I think I read somewhere it is like 1 out of every 10,000 babies>

This statement is correct as of 2004.

1 out of every 10,000 babies sounds like nothing, but what it amounts to is approximately 22,000 babies every year in the U.S. alone who are allergic to breastmilk. It isn’t really that “out there” and unfortunately, according to a study published in the New England Journal of Medicine in August of 2004 it is rapidly on the rise.

Traci

[Anonymous]

KEEP SCROLLING!!! 🙂

[Anonymous]

So glad I read this! Very informative.

Let’s give it a bump to the top.

[Anonymous]

Laura~
This is one of my FAVORITE posts! I am a very strong believer in breastfeeding and, until you are faced with a child that can not take your milk, you do not know what it feels to have to make that decision. I think that the breastfeeding forum was a perfect place for the post to be. There are so many of us who have dealt with this and it is so very hard to understand. Thanks for being the “information QUEEN”!!!!

[Anonymous]

Wow, thank you for this post. It is very interesting, especially since we are now trialing my ds on Neocate after trying to keep him on breastmilk with worsening results. He is suspected of having this complete protein allergy and removing all soy and dairy from my diet for 6 weeks plus did absolutely NOTHING to improve his situation!!!

Laura..do you know how to get in touch with the author of this post (her email address)? She mentions three specialists in the country that deal with this issue and I would love to know who they are. Does anyone know?

Thanks again for sharing this valuable information. As a mom that has exclusively pumped for 9 months now and fed my child via eyedropper, I am all for breasfeeding…but unfortunately I am coming to realize that my ds may be one of those babies who may NEED something like neocate to heal all the damage done so far. I guess the weeks ahead will tell if this is indeed the case.

rekha

[Anonymous]

It was unbarebly hard to give up nursing my youngest at just three months because he was unable to tolerate my milk as well. I envisionsed breastfeeding him until at least two as I did his older brother who was allergic to soy, dairy and eggs and then transitioning to rice milk. But with Liam it was different. His reflux was so intense he would even throw up on me when I was nursing him and scream in pain. He didn’t want to eat anymore. I had so much milk I went through to bouts of mastitis. I really wish I could have because I was so devoted and given up just about everything food wise. But I had to do what was best for him. It wasn’t about me. That’s what we mothers do isn’t it? We do whatever we can for our little ones.

My nephew is currently in Cincinnati going through a weeks worth of doctors visits and testing to hopefully get some definative answers. They believe he has EE or MFPI. He can only tolerate Neocate and will be 2 in March. So I too would love to know who the 3 doctors are. It is so hard to find people in the medical field that truly understand these diseases and disorders and what you loved ones are going through.

[hellbennt]

Go to the Menu to the Directory to Find a Provider Near YOU!

[Anonymous]

Does this mean things like loose stools and mucous and blood and reflux get worse before better?

[hellbennt]

they can. I think what it is is that things *looks*/*seem* worse- for example- new medicine- it does’t just work instantaneously-so while you’re waiting for it to ‘kick in’ it seems like things are worse, bcse it’s as if they’re not on any meds at all- same with diet- until you see improvement, you don’t know what’s working- so eery change takes a good two weeks- sometimes w/ diet the proteins (offending proteins) need to work their way out of the system (again, two weeks or less) & also w/ diet things can llok good, you introduce a new protein and 2 weeks later the proteins have built up in the baby’s system & then you realize that the new protein needs to be cut back out again

[Anonymous]

When I take small amount of neocate away in a day stools have less blood and slightly less green mucous and burning of the bum. Also he is a strong nurser and wants nothing to do with the bottle full time. This is so hard to switch to bottle if it’s going to fail and better off nursing. But I am beat! I also want the best for my baby. Also not sure if he tolerates corn products in elementals or Zantac because he did super reflux on Monday night and by Tuesday he is coughing up a lung. I really don’t know what to make of any of it. Dr wants to scope again but not sure why, andif I will allow that.

[Anonymous]

Thanks for posting this. I wish I had found this forum 2 months ago. The doc had us try Elecare before starting reflux meds because she wanted to be sure that it wasn’t still the milk/soy protein allergy being irritated by the Alimentum. Those were a horrible 5 days. I wish I’d known more and I would have insisted they go ahead with the reflux treatment. I would have insisted on another stool test which was probably blood free at that point.

[Anonymous]

Dmarie, how is your baby now and what is she drinking? How did she do on elecare and what is she on for reflux Meds ?

[Author]

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