UNanswered prayers

So we have been up at the Mayo Clinic now for almost two weeks. We are about to start trialing the new updeated neocate label, though we are sure he will react to it just like he does anything made after May 01 2012. If you ask me what I want, I just want the company to admit that they did make a change and tell us they will continue to make these children their safe cans. I hate that the company keeps saying 15, when Steven was in my house he said 18, It’s odd though becuase I know 27. So 15 isn’t 15 it’s probably more like 100. Especially because I don’t know alot of people and I havent gotten my word our to many others. I stay strong through all of this, but if they don’t change it back or continue to make their safe formula then my son and other children will die. THIS IS NOT OKAY, MAN UP AND ADMIT YOU CHANGED IT, AND CHANGE IT BACK IF EVEN JUST FOR THESE CHILDREN. What is wrong with you? It’s bad enough my son can only tolerate one food, now you are changing it to make a product cost cut? You could have just asked us to pay more, we would in a heart beat.

This is not the end you will hear from me, I WILL NOT STOP UNTIL WE HAVE ANSWERS. It’s time to step forward and be honest before you are proven dishonest, then who will trust you, lots of people will go to your competitors….We will stand strong!

Neocate changed in MAY 01 2012, and PEOPLE NEED TO KNOW THAT if their children are all of a suddenly getting sick that’s why!!!!


8 comments on “UNanswered prayers

  1. Don’t give up, hon!! Keep fighting for your son! I wish your answers had come already, but they are out there…don’t stop until you get them. You and Michael have lots of supporters…we’re here for you!!

  2. I read about your son’s plight in a newspaper article, and I’m so sorry to hear about it. I have a friend that can eat only a very few foods at this point, since she develops an allergy to anything she eats for very long. So we’ve been searching for a solution to her problem, and I think we’ve finally found it. I know that your son could be very different than my friend, but have you considered a vitamin b12 deficiency? Scientists have found that it’s involved in at least 600 processes in the body, some of them in the gut/digestive system and the immune system.

    As I’ve done a lot of research on this subject, it seems like each person responds to a deficiency of b12 differently and has different presenting symptoms, so it’s not uncommon for doctors to miss a b12 deficiency.

    What’s exciting is that treatment for b12 deficiency has over time drastically reduced some people’s food allergies. In regards to my friend, she has enough other symptoms of b12 deficiency that this looks highly promising for her.

    Something to keep in mind is that most b12 in supplements is cyanocobalamin, which many people can’t convert to the form used in the body, methylcobalamin. (A genetic problem) So if you decide to look into this, you may want to consider methylcobalamin shots, which are more effective and allow higher dosages than oral pills (least absorbable for many people) and sublingual tablets (a much better choice for most people) Another important thing to know is that methylcobalamin becomes unstable when exposed to light, and degrades and becomes much less effective. Keeping the shots and serum completely in the dark is very important.

    The main caveat to this is if the body is indeed deficient in b12, then getting enough of it allows for increased cell production, which can use a lot more potassium all at once, and cause low potassium symptoms for a time. Definitely something that needs to be monitored, although as the body catches up on cell production, the drop in potassium goes away.

    If you decide to get blood tests to check b12, please keep in mind that the b12 serum test on its own is unreliable. Here’s a link on the two additional tests that are needed: http://labtestsonline.org/understanding/analytes/mma/tab/test

    Also, most b12 blood serum tests in the US have ranges where normal results go as low as 200. Japan starts aggressively treating for b12 deficiency at the 550 mark.

    I know this may not be helpful information to you, but I wanted to let you know about it on the off chance it could be just the thing. Feel free to contact me if you have questions.

  3. Good luck! Hope the company replies to your cries quickly!

    Also check out if poi may work. It is a traditional Hawaiian non dairy first baby food. It was one of the rare solid foods my daughter would eat as a baby. It can be ordered in powder form so it can be shipped, opposite to what most of people think. In Hawaii it is sold as a paste in the stores.

  4. Apologies if this has been brought up previously but have you tried the other 2 amino acid based formulas? Nutramigen AA and Elacare? I only see plain Nutramigen on your food list which is still milk based. Nutramigen AA is not milk based.

  5. Have you tried NAET to eliminate allergies? It is a powerful technique combining acupuncture points and principals of naturopathic medicine. It’s very inexpensive and easy on your son. Please consider trying it. It got rid of my daughter’s intractable chronic diarrhea when she was a baby. http://www.naet.com

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