The response from the Neocate company

I spoke with Elayna McKenzie, the Neocate brand manager, again on Friday, and here is a recap of our conversation:

1. Nutricia is looking into alternatives for parents like me. They are trying to get the FDA to allow them to sell the Canadian Neocate Infant to customers in the US. Until the Canadian version of the FDA approves the switch to the gold formulation, they are manufacturing it with the old emulsifier. There are differences in the Canadian formulation—mostly a lower vitamin and mineral ratio, but otherwise, it is the same as our yellow Neocate. Elayna is sending me a case of it to try.

2. Nutricia is a relatively small company, and according to Elayna, they have to pick one formulation or the other—they cannot make both. They had so many requests from parents for a new emulsifier to make Neocate mix better, that they made the change. In Elayna’s words, this change “makes their [parents’] lives easier.” When I explained that this convenience factor is making my baby and other babies like her very ill, Elayna told me that the change not only makes the formula mix better, it also tastes better and looks more like real milk which is important for old children on Neocate. (I am willing to bet that most other parents would gladly give up these conveniences if they knew what the gold label was doing to some of our babies!!!)

3. Nutricia is an international company, and as such, the decision to change Neocate was a global one. The US division cannot change it back. In all markets, Neocate is changing or will change as soon as the governments in each market approve it. The management of the US division is investigating every report of problems that they receive, and after extensive testing, they have concluded all of these issues are not related to the change in Neocate. Elayna assured me that the change was because of money—according to her, the gold Neocate is more expensive to manufacture. Globally, they know about only 1 or 2 cases “here or there” of children not tolerating the change (except in the US market). Brand new babies who are immediately placed on Neocate are not having any issues tolerating it (Elayna knew of only 1 exception to this), and it is just older babies having issues with it.

4. Elayna told me there is “no chance” that they will begin manufacturing the yellow Neocate again.

5. Elayna called my situation “very unfortunate,” and she assured me that they try to listen to their customers. She also said that her CEO has received all our letters and emails, and they have frequent discussions via conference calls with their parent company in the UK about these issues. But, the US division is “kinda stuck” because of they are a small part of a global company. I do think that the company is trying to work with me to find a solution. However, I plan to redouble my efforts to get other parents having issues with the gold Neocate to call or email the company. If they listened to parents and changed it, they can listen to parents and change it back.


So, where do we go from here? The company has 40 cases of the yellow Neocate left, and they are willing to set aside a part of this supply exclusively for Emily. I had been misinformed about the potential for cross-containments in Neocate Jr—it is manufactured in a completely dairy and soy free plant. Neocate Jr has the same emulsifier as the yellow Neocate, and it has a lower carb ratio than Neocate One+, so it is possible that Emily will tolerate this better if we dilute it from 30 calories per ounce to 20 calories per ounce.

I do think that the company is trying to work with me to find a solution. However, I plan to redouble my efforts to get other parents having issues with the gold Neocate to call or email the company. If they listened to parents and changed it, they can listen to parents and change it back.

Thanks to friends and family searching the country for yellow Neocate, we have enough (along with the reserves from the manufacturer) to try these other alternatives. It is a slow process, and many days it is two steps forward, three steps back with Emily. Through it all, she continues to be a happy, sunny baby. Her smile makes it all worthwhile!