Cornstarch Supplementation

We were told you can mix cornstarch with anything as long as you don’t cook it. Our son is two and weighs 29 pounds. Dr. Vockley has us give him three tablespoons before bed, and then we wake him at 1:30 a.m. to give him three more tablespoons. We do the cornstarch during the night in hopes to avoid an NG tube. We’ve had three doctors tell us NOT to cook cornstarch. The reason for using it is because it’s a complex carb and something is lost if you cook it. He just spent Wednesday in the hospital getting IV Glucose because of the stomach flu. Is this something that would have been unnecessary had he had an NG?

Debbie

Unclassified FOD mom

I have also mixed the cornstarch with just a little bit of cold water and pushed it through my daughter’s tube. Of course it may not be too tasty to drink! 

Lisa

VLCAD mom

My son took cornstarch since he was two years. I remember that doctors in Argentina recommended it when he was diagnosed at the age of one year and a half, but I could not believe in them. “Non cooked cornstarch? They are crazy,” I thought. When we met Dr. Roe at Baylor (then he was two years) and he confirmed “the non-cooked trick” then I believed it. Now that he is six years old I’ve been thinking in the possibility of taking him off cornstarch at night. Night is the only time he takes it. He eats very, very well, a very high carbo diet (I always think that as he becomes older he will HATE mashed potato, our schedule for meals are different from yours – we have dinner at 9 p.m., so he is having the dessert at 10 p.m.) and he wakes up early in the morning, so he never fasts more than 10 hours. Next week we have the annual appointment with his doctor and I will tell her what I think. Of course I won’t do anything wrong, but as I know her I know that her answer will be “NO.” So, I will invite her to join the list and to mail Dr. Roe. I think that in our case cornstarch is useful for example for the days he goes to karate or football classes, but not every day. I want to be sure that giving or taking off cornstarch won’t cause any problems. 

Maria Martha

VLCAD mom

I was told by our metabolic nutritionist and Doctors to use it ONLY once a day (at bedtime) and uncooked. ARGO brand (although they don’t know why) works the best. I was also told that it was NOT given to children before one year of age (I can’t remember the exact reason why…something to do with one of the organs unable to process it???) But I do remember them saying that it is not good before one year of age. The amount should be determined by your specialist – it is based on age and weight. 

Gina

VLCAD mom

They recommend not starting the cornstarch in children under a year of age because they feel that they lack the necessary pancreatic amylase to digest the cornstarch. However, trials have been done in children as young as seven or eight months with success. At our metabolic clinic, I recommend the use of uncooked cornstarch as it provides a more delayed release of glucose. We also recommend that it NOT be mixed with lemonade or in something very acidic as it affects the metabolism of the cornstarch.

Joyce

RD at a Metabolic Clinic in CA

Our son gets four tablespoons of cornstarch in his six oz of milk before bed every night. He’s 21 months old and 30 pounds. It sounds like we’re on the high end compared to the amount everyone else is giving their children. But it’s working well for us and we’ve been giving him the cornstarch for more than a year (of course, in lesser amounts when he was smaller). 

Lisa

MCAD mom

What I understand is that the cornstarch mixed with food or drink is a “slow release” source of energy. Unlike sweet drinks or cereals that are used quickly during activity, the cornstarch breaks down and the sugars are available or used at a slower rate. We asked our specialist about using cornstarch with our 5-year-old MCAD child. He said that it was not necessary at this time as long as she is eating well. She has no lasting complications from previous episodes. As she becomes older and more active (as in sports and sports training), he may recommend it in the future. As of now, we are not using cornstarch. 

Melanie

MCAD mom

My son gets three tablespoons mixed in with his skim milk and chocolate syrup. He is 50 lbs. and four years old. He drinks approximately 10 ounces every night before bedtime. 

Bob

MCAD dad

I give my daughter (LCHAD, age 4.5, weight 38 pounds) two tablespoons of cornstarch each night. What I do is take 3/4 to a full jar of Gerber cherry vanilla pudding, one teaspoon sugar and water to moisten the cornstarch. Chill in fridge and feed it to her at 8:30 p.m. She has her breakfast at 8 a.m. and her blood sugar is always in the upper 80s when she gets up in the morning. This is a good reading for her. She is full of energy and ready to go. After a full meal her blood sugar only goes up into the mid 90s. Never goes much higher then that. When she falls to around 77 I notice a difference in her and always know she needs some carbs for a pick-up. 

Melissa

LCHAD mom

Grifinn takes her cornstarch before bed each night in nonfat milk with any of the following: Carnation Instant Breakfast, Nestle’s Chocolate Syrup, Nestle’s Strawberry Syrup. I also make her milkshakes with fat-free vanilla frozen yogurt and bananas or frozen blueberries. These go over really well. I tell her that her “Chocolate” (doesn’t matter what flavor it ACTUALLY is) is very important and that she has to drink it all, and for the most part, she does. I have to stir/shake the beverage frequently since the cornstarch settles to the bottom. Another trick is to use a straw because then she gets the more concentrated part of the drink from the bottom of the cup. If she doesn’t drink enough to satisfy me, once she’s asleep, I get one of the large (5 ml) medicine droppers and put it to her lips and she has the instinct to drink it while I squirt it in her mouth a bit at a time. It’s probably a good idea to wipe the teeth off a bit before putting the kiddo down for the night. I worry that all of the sugar/starch will do damage in her toothies.

Kelly 

MCAD mom

Since Isabelle has started the cornstarch at night she is not as hungry and doesn’t eat as big of a snack. She takes 2½ Tbsp and she weighs 27 lbs.

Sharon 

LCHAD mom