Friday, February 25, 2011

It's Not About You

Some people just don't get it. The amount of phone calls I have had to make looking for soy free and corn free foods has been ridiculous. Some of those people take my questions personal, which I believe is just their way of feeling guilty. The worst thing I have had to research by far has been a probiotic. I have to ask what the probiotic is cultured on, because there could be trace amounts of it. And just like some people (doctors, other moms, anyone I might talk to) think I am crazy when I say that my daughter can have a violent reaction if she licks the corn based adhesive on a cardboard box, some people do not believe that she could react to these trace amounts in a probiotic. I had SUCH HOPE.....this particular business owner was so kind, and even sent me samples of his probiotics to try. Oh well. Without further ado, here is our conversation for your reading pleasure:

Hi there
I was hoping to recommend your probiotic to some other mothers whose children have the same condition as mine (FPIES), but they need to know what your probiotic is cultured on. Can you let me know? Thanks so much!
Nichole Sawatzky
***************

It is proprietary.

(business owner)

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Oh, that is most unfortunate! In case of severe anaphylaxis whatever the probiotic is cultured on is extremely important. You are the first company (of about 12) I have contacted who have been unable to answer. I will need to cancel an order I placed last night then, because I intended to confirm that my daughter could take it today. Without knowing it is safe for her I will not be able to administer it.
The order number is:
Order number: XXXXXX
Please let me know the process for canceling since I could not find information on it on your website.
Thank you again for you help and quick responses,
Nichole Sawatzky
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Our probiotic powders are straight cultures. Nothing is added to them. That is why they are of very high potency.
But what they are grown on and how they are manufactured is proprietary.
We have thousands of clients that have tons of allergies and do very well with our probiotics.
Your order is cancelled.
Have a good day.

(business owner)
******************

Thank you again. You have been very helpful, and I completely understand. My daughter's condition is extremely rare; in fact, approximately 200 kids in the US have been diagnosed with it so far. (I cant back this up - only used this number because I saw other moms use it) It is an immune system condition that requires me to monitor every food trace that goes into her mouth or else she can have extreme shock, profuse diarrhea, vomiting, and in the worst cases extreme malnourishment and organ failure. She has even reacted to corn by licking the adhesive on a box. In the rare chance that she DID react to your probiotic I would need to know what it was to so that I could avoid it in the future. Dr. Jyonouchi at the New Jersey School of Medicine has published protocols (OK this I found out more by word of mouth, but I was getting irritated!) warning against using probiotics or prebiotics cultured on known reactors. I simply cant risk it, nor can the other moms.

Thank you once more for all of your help,

Nichole Sawatzky
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Our probiotic powders are gluten, sugar, yeast, lactose, dairy, soy, color, flavor, casein, preservative, FOS free. Potency is 250 billion cfu's per gram.

Let me know which of the 20 companies you have contacted has such a product.

(business owner)

And there you have it! I have not responded. Should I?

3 comments:

  1. Holy cow!!! How much more complicated can your life get???? So sorry you have to deal with these people!

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  2. You could reply, "That's propriatary."

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  3. Ooh! I like Amie's suggestion! LOL!

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