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September 2, 2010 in Uncategorized

Is anyone else out there on Bettermilk? That's Cambrooke Food's GMP formula. I have been taking it for about 3 months and I really like it. It actually tastes really good. I tried Kuvan and was not a responder. I have heard that Bettermilk stabilizes and even lowers phe levels in some people. I definitely have better appetite control on it, and it does seem to stabilize my moods. I'm not as emotional, even though I'm probably eating a little more phe than I should every day (each packet has 23 mg of phe, and I have to take 4 or 5 a day). I'm only allowed 350 mgs of phe per day. I haven't done a level to confirm this yet, which I probably should. Just wondered about other people's experiences.

7 Reviews of Bettermilk

  1. Registered: May 1, 2009

    Posts: 0

    Lee, Massachusetts

    I would be interested in this as well my on is only 16 months but cambrooke said they are going to send me a sample

  2. Registered: Feb 27, 2008

    Posts: 0


    Hi – we live in the UK but I have been trying to find information about Bettermilk for my 3 year old daughter. Our consultant has never even heard of GMP (I had to give him some copies of the research studies into it at our last appointment) so I am not hopeful that anything like Bettermilk will be available in the UK in the near future. However, I was wondering about paying for it privately and maybe travelling to the US to pick it up every few months. I assume we would need some sort of note or prescription from our consultant here but I am hopeful that could be arranged.

    Does anyone know how much Bettermilk costs with no insurance? Our daughter takes 30g protein via protein substitute per day so I think that would work out at 2 sachets of Bettermilk per day, so around 60 sachets or two boxes per month.

    Also, does anyone else have experience of it being better / more palatable / improvement of mood etc?

    I have seen that research is now being done into whether Bettermilk improves bone density and bone development in children with PKU. This is something I am particularly worried about with my daughter who is very petite for her age and seems quite “fragile” – I always worry this could be connected to her PKU.

    Any comments or help would be much appreciated!

    Thanks a lot

  3. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Hi Ruth,
    I use about 5 boxes a month & that would cost me $1533 if I had to pay out of pocket. It’s pretty cost prohibitive for me. If you read my blog, I mentioned that it tastes a lot better than any other other formula I’ve tried. I mix it with a little bit of juice & it tastes just like a smoothie. There’s no aftertaste & it doesn’t taste like medicine. It also does help control my appetite & seems to help with my moods too.

  4. Registered: Aug 27, 2010

    Posts: 0

    Plainfield, Illinois


    I looked on the cambrooke foods website and the price that they quote for someone to purchase Bettermilk without insurance is $306.60 (US) for one carton. One carton has 28 servings. Their website encourages people to contact them about setting up a payment plan, so perhaps if you contacted them directly, you could make arrangements for your daughter to receive some the products. They also offer a free sample. The website is

  5. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Thanks Ruth. I do go through my insurance for the formula. My state (IL) also pays for most formulas, and Bettermilk should be one of the approved formulas by November. So then I won’t even have to worry about insurance.

  6. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Sarah.. I do like the Bettermilk too! I just got a bunch to sample from my clinic to see if it works for me and my schedule.. I have to say, even though it tastes delicious… the Camino Pro drinks (that are pre-mixed) work WAY better for me. Being able to take one and go has been so convenient… most of all though, it is what I get down on a consistent basis… good luck with that insurance coverage.. I just fought my insurance for 2 years over the Camino Pro drinks!

  7. Registered: Sep 8, 2010

    Posts: 0

    louisville, Kentucky

    i have a 3 yr old daughter and i cant get her to take her the bettermilk stuff . what can i do to get her to take it ? im lost for words. I have talked to her dr bout it and all they say is awh well add more water but i wana know how u make urs?

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