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What's Important when it comes to formula choice.
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TOPIC: What's Important when it comes to formula choice.
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What's Important when it comes to formula choice. 3 Years, 7 Months ago  
As a 29 year old living with classic MSUD, I have, over the years, thought a lot about the formula options available for patients with MSUD.

Back when I was born, there were few options; I was on MSUD 2 as a child and through college. As a child, my mom, as well as many doctors, recommended I drink it with Tang or some other powdery sugary substance to add calories and enhance my desire to drink it. Corn syrup and corn oil were also often utilized for this purpose.

In college, I decided to jettison the flavoring, and found that I actually enjoyed the taste better plain, and additionally there was already sugar enough in the shake (plus I was obese, and was eating regular and low protein foods enough to get what I needed in the way of calories). If I needed additional calories I would add some 100% juice or olive oil, as healthier alternatives. Later on I tried Camino Pro, for the convenience factor, but ultimately went back to my MSUD 2. The protein and vitamin content to calorie amount was more appealing, and Camino Pro had some sort of sugar substitute in it as well as sugar. I found Camino Pro great because it added fiber (which my diet was lacking), but found I didn't want or need it with every meal, plus many of Cambrooke's low pro foods had fiber added as well (which I love!). I found Camino Pro to be a much better alternative to MSUD 2 than many other formulas-even though it ultimately wasn't right for me. I had often considered having one shake a day of Camino pro, and the rest MSUD 2-to help with fiber and convenience.

With my powder MSUD 2-I managed to still make it portable by measuring a meal's worth of powder out and putting it in ziplocs or snap tight mini-containers that I could throw into my purse. I would then mix it on the go in a paper cup with water or juice-no blender, just stir with a spoon.

You can find a way to make any formula convenient, but finding the most balanced nutritional source of protein and vitamins is harder. I have seen formulas with as little as 25 grams or protein/ 2000 calories (made no sense to me since I need about 60 grams/day to function, and only require 1800 calories for the day). Recently I've seen some formulas that have corn syrup in them. MSUD formula is the main source for us to get nutrients; it's our meat, our dairy, our pasta all in one, and to have to have it served up with one of the most unhealthy sources of sugar, day in and day out seems absurd.

One formula I really like and am exploring more about is MSD Complex-they have good carbs, and even fats in the main formula and a supplement of pure amino acid powder, so you can bump up as needed.

I know everyone just wants their kids to be willing to drink the formula, but if my mom had given me a chance and a choice, I would have learned to have it plain, just as I learned to choke down the gross tang flavored version; I learned this bc my life depended on it, and I was taught to be responsible for having it three times a day from about the age of 4/5. My mom would have me take it out of the refrigerator before every meal, so I could have it with the meal.

Sometimes, it's not about taste, or "will my kid like it", it's about what's healthiest and best for them. We know so much more now about how awful corn syrup is and how necessary omega 3 fatty acids and and lean proteins are for our health; we need to think about how we fuel MSUD kids and adults.

I am almost to the end of my first MSUD pregnancy; MSUD 2 is great for pregnancy because it is packed with protein and vitamins. My OBGYN nutritionist explained that corn syrup is not only bad for the reasons we've known about-mostly it leading to obesity-which people with MSUD/slower metabolism, do not need more help with (www.mayoclinic.com/health/high-fructose-corn-syrup/AN01588), but also, as some studies have shown, very often products with high fructose corn syrup contain detectable levels of mercury uk.reuters.com/article/2009/01/27/us-mer...dUKTRE50Q5IA20090127

I really think it's important for parents of children with MSUD and people who have MSUD to seriously compare profiles of various formulas before making a decision.
rachaelpokrovski
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