Corrigan is anorexic.
How weird is that to type?
Anorexia is a side effect of his disorder. Anorexia is defined as, “an absence of the desire to eat, induced by psychological drugs or by social, environmental, or other factors.”
This is not to be confused with Anorexia Nervosa which is defined as, “A psycho-physiological disorder characterized by an abnormal fear of becoming obese and therefor a distorted self-image. This results in an unwillingness to eat leading to severe weight loss”
For the last two weeks Corrigan has nearly stopped eating solids, by mouth, and even his old favorite, McDonald’s french fries, have not enticed him to eat more than a few bites. As you know, Corrigan became a pretty poor eater around one year of age and while he has had improvements with therapy he seems to be regressing.
I will say it again, “Thank GOD for the g-tube”
The following information was pulled from the NUCDF website detailing information given by Dr. Batshaw at the 2000 NUCDF National Conference:
“Many parents raised concerns about lack of appetite and “picky eating” in their children. Dr. Mark Batshaw offered several reasons why children with UCDs present with various degrees of anorexia, or did not want to eat.
He indicated that UCD children have a high level of serotonin, a brain chemical which turns off appetite. Normally, serotonin levels increase about 20 minutes after eating and essentially give us the signal that we are full. In UCD children, serotonin levels are consistently high throughout the day because glutamine, another brain chemical that accumulates with UCDs, serves as a carrier transport mechanism in the brain for tryptophan, which becomes serotonin.
The second factor in this anorexia, Dr. Batshaw indicates, is behavioral. Essentially, the children do not like food because it makes them feel sick. He likened this feeling to something we all may have experienced – having the flu or vomiting a food, and then having an aversion to that food. For these children, the feeling of being sick from eating high-protein foods is then generalized to other foods. He suggested that in some cases the use of nasogastric or G-tubes may be necessary in order to facilitate feedings. He also suggested obtaining the help of a behavioral psychologist who could assist in identifying and addressing the behavioral factors.”
Corrigan will still, for now, take liquids by mouth but they have to really spark his interest. His daily goat milk/protein-free amino formula is a struggle to get him to take and I pretty much have to bolus it into his tube for each meal.
Nobody wants Corrigan to completely stop eating by mouth. The tube was supposed to be a bridge until the time when he was a little older and could better be reasoned with. It was not meant to replace eating normally. However, it looks like it becoming the primary way in which Corrigan “eats” each day.
We work hard to keep his interest in food and always give him a chance to eat/drink by mouth first before we tube it. With his bottles, I give him 15 minutes to consume it by mouth before I give it to him by g-tube. With solid food we give him quite a bit more time to eat. The last few weeks though have shown us that, left to his own hunger signals, Corrigan would simply starve or become severely ill with his disorder before he would eat “normally.”
The mornings are the time that he is most receptive to drinking his formula but throughout the day he vehemently shows displeasure at the sight of his bottle and will slap it from my hands. He tries to toss his solids to the dog.
I am thankful that we can meet his protein needs with drinkable yogurts but I am worried that he is not getting the vitamins and nutrition that he needs with 2 containers of drinkable yogurt and a handful of hashbrowns every day.
I have been researching the possibility of learning how to “juice” foods for Corrigan until I came across this product in the organic aisle of my local supermarket.
Have you tried Naked Juice?
…and he likes it!
His favorite is Blue Machine but I am anxious to see what he thinks of the flavor that he is holding, Green Machine. I always chuckle when I see the little blurb on the front of the Green Machine bottle, “Looks weird, tastes amazing!”
There is some protein in each serving. The Blue Machine has only 1 gram of protein per 8 ounces but the others in my fridge have 2 grams of protein per 8 ounce serving so you will have to factor that in your daily protein allowance. However, since Corrigan is allotted 10-11 grams of protein from solids per day, and is barely eating 7 grams of those allowed, I have plenty of room to add these Superfood drinks to his diet and feel really good about the nutrition that he is receiving in one serving!
I am amazed at what they are able to squeeze into a bottle of Naked Juice. While the price of a 15 ounce bottle is a little high for my budget (I pay over $3.00 for one-ouch!) I feel like it is a good investment in his daily nutritional health and for the price of each of those individual ingredients (plus the cost of my time it would take to juice them all on my own) it is money well spent.
The ingredients are sustainably grown, no additives and there is zero sugar added!!
When Corrigan is drinking the Naked Juice by mouth I do have to add a few ounces of water to weaken the flavor a tiny bit. As an adult, I love the flavor of Naked Juices. It really feels like I am drinking something really good for me but for a two-year old the flavor can be a tiny bit intense so watering it down helps. Corrigan needs nearly 40 ounces of fluids per day to facilitate ammonia removal from his scavenger medicine so adding a little water is a good thing! However, when it is time for his night feed I pour half of a serving (or more if he is behind in his protein), full strength, into his mix .
The calories alone from this juice are a UCD mom’s dream! Ideally, I look for foods that are nutritional but also offer a minimum of 50 calories per gram of protein. (UCD kids have higher caloric needs than other kids!) Just 4 ounces of Naked Juice (Blue Machine) is .5 grams of protein and 85 calories!! That means that a full serving of Blue Machine (8 ounces) is 1 gram of protein and 170 calories. And not empty meaningless calories that he would get from junk food! This makes me VERY happy!
If you are tube feeding your child and want to add fruits and veggies to their diet but juicing your own feels overwhelming, perhaps you could ask your child’s dietitian if Naked Juice would be a good nutritional choice for their UCD diet!
If you would like more information about Naked Juice please visit their website HERE
(This post was not sponsored by Naked Juice in any way at all. As a mom that is struggling with the nutritional needs of my tube-fed child I am always looking for ways to improve his diet and simply want to pass on what is working for us. As always, my posts are not medical advice and I ask that you always check with your child’s doctors/dietitian before adding anything to their closely regulated regimen!)