userjjb

Hello, I work for Cambrooke!

I was surprised to see an AMA for PKU on the front page, and even more surprised to see a bottle of Restore (the bottle of formula being held up) in the picture.

I am an engineer, project manager, and am intimately involved with product development work at Cambrooke. We are a very small company of ~40 people, our founders are parents whose children have PKU (Cameron and Brooke, hence "CamBrooke") who were fed up with the quality of formula and lack of food for PKU people and decided to start a business to fix that.

OP or anyone else, feel free to ask any questions you might have about PKU formula and foods and I'll happily answer (minus trade secrets)! I personally touched the first probably 20,000 bottles of Restore as I built and designed part of the production line, and then ran production for the first couple months until we hired operators.

It is worth splitting the products into two categories: "formula" and food.

Pretty much all protein typically contains Phenylalanine as one of the amino acids that makes up it's backbone (Phe is the amino acid people with PKU need to restrict intake of). If you eat a protein restricted diet to limit Phe intake, you also therefore limit intake of all other amino acids. Some amino acids are considered "essential" because the body is unable to synthesize them from other nutrients. The only way to get these is via food.

PKU formula therefore is food for the person that contains the adequate amount of amino acids necessary for day to day life. It also is typically "complete", meaning it contains the daily requirements for vitamins, minerals, and any other nutrients that may be deficient in a protein restricted diet. Traditionally formula is nothing more than a "cocktail" of individual amino acids with some flavoring, colors, and sweeteners.

Food on the other hand makes up the remainder of the diet. This doesn't have to be anything special per se, it just should be low in Phe. Most fruits and vegetables fall in this category, so a PKU diet looks pretty similar to a vegan diet in a lot of ways. Of course many PKU patients would like to eat food that they normally couldn't: pizza, bread, hot dogs, hamburgers, etc. This is where formulated foods come in. We use various ingredient analogues to make imitation versions of these foods.

Therefore both food and formula present different challenges. Typically the biggest challenge with formula is just making it taste bearable. The usual amino acid cocktails typically taste very acidic, metallic, bitter, and leave a bad aftertaste/breath. You typically do your best to make the thing as concentrated as possible and chug it to avoid tasting it.

This is where our big claim to fame comes in: rather than using a cocktail of individual amino acids for the protein source we've licensed a special actual protein. It luckily happens to not have Phe in it at all. This is unusual in the same way that rolling 20 dice and not getting a 1 is. The protein is 64 peptides long and is called glycosalated-caseinomacropeptide. It is derived from milk whey protein, specifically kappa-casein, and supplemented with a little bit more of a couple essential amino acids. The total blend has the trade name "Glytactin".

Having a whole protein source means we have a lot more freedom in formulation! We have formula in several forms, one similiar to a PowerBar, another like Gatorade, a powered formula that when reconstituted is like milk, and a new product that is like a vanilla or chocolate shake. All of these taste what most people would call "normal". Part of the challenge is, like OP said, PKU people are used to bad tasting formulas and often see it as something to get over with rather than enjoy.

Food formulation is another thing entirely. In some respects it is more of an art than the more scienc-y work for formula products. A key part of it is using ingredient analogues to make convincing imitations. For instance our hot dogs actually are made mostly of sweet potatoes! The key is using the same spices as are in hot dogs, we also using the same casing as in natural real hot dogs. Most of are food is quite good, and if it was a normally priced retail product at the grocery store I would buy it. We have a brocolli and cheese Hotpocket style snack that is real yummy.

One major food formulation challenge is texture, which is hard to fake. If done incorrectly breads and pasta get gummy (due to lack of gluten) as an example.

I don't have our sales in fron of me since I just got home, but from memory our breads, cheese pizza, chicken nuggets, cheese, pasta, and baking mixes are our top sellers for food.

I would love to switch to that for health reasons but I can't stand the aftertaste.

Is this the Bettermilk or Restore? (see my comment above to ettenyl) The Bettermilk has 3 different flavors too: regular, strawberry, and orange. Their recently was a reformulation of the minerals that eliminates the aftertaste you are talking about.

It might be worth getting samples of the improved product and see if you like it.

I liked the Glytactin by Cambrooke but it wasn't enough calories compared to other options.

If you don't mind me asking, which product are you talking about? Glytactin is actually just an ingredient that contains both Phe-free protein and a mix of other aminos. There are three products currently that contain Glytactin;

-Bettermilk (a powdered formula that tastes like milk and comes in regular, orange, and strawberry flavors)

-Restore (ready to drink, similar to Gatorade in concept, comes in tangerine and lemon-lime flavors)

-Complete bars (kind of like a protein bar covered in chocolate, comes in fruit-frenzy and peanut butter flavors)

I believe the Complete bars aren't covered as formula in some states though.