Oh yeah, the feeding team had some recommendations too (surprise, surprise). They said that Amina is underweight for her height and has a limited food intake. They want me to give her a calorie supplement called Duocal which I need to mix into her food and pediasure 4 times a day. What they neglected to mention was that it costs $89.00 per case, which in addition to the Pediasure should pretty much put us in the poor house. And, it has to be ordered online. This left me wondering, what do families that don't have computers or $89.00 to spare give their kids?
They also suggested that I boost her calories at meal times as much as possible. The handout they gave me states I should add "heavy cream, butter, margarine, mayonnaise, cheese, powdered milk or sour cream" to her foods. Sigh. There's so many things wrong with this I don't even know where to begin. First of all, everyone else in the house (well maybe just me) is trying to eat LESS of all of those things, and now I have to make SPECIAL MEALS loaded with FAT for Amina. Second, just about all of those things have CALCIUM!!! Third, when's a good time to start worrying about clogged arteries? I'm no dietician, but I just can't understand how too much of that stuff is bad for the general population but for a one year old, its all good?
Maybe I can just save some time and money and just give her melted butter and EVOO in her bottles. Or better yet, I'll just let her roll around in some gravy and hope she injests some. Or lard! That's got to be loaded with calories. Yeah, I'll just give her lard patties for breakfast, lunch and dinner and see if that doesn't fatten her up some. DID ANYONE EVER CONSIDER THAT MAYBE SHE'S JUST GOING TO BE (GASP) THIN????
I'm glad the week is over. I know I said it before, but its worth repeating. And I'm glad I don't have to meet with those loosers at the feeding team for another 6-8 weeks.
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6 comments:
Hey G, YOur instincts seem to be right about the diet. When I read your post I thought of a family with a child with Cystic Fibrosis telling me of a similar diet bc their daughter had problems with nutrient absorption.
I pulled this up from Wiki: "It should be noted, however, that nutritional advice given to patients is, at best, mixed: Often, literature encourages the eating of high-fat foods without differentiating between saturated and unsaturated fats/trans-fats; this lack of clear information runs counter to health advice given to the general population, and creates the risk of further serious health problems for people with cystic fibrosis as they grow older. So far, no large-scale research involving the incidence of atherosclerosis and coronary heart disease in adults with cystic fibrosis has been conducted."
Maybe as you google, you can see what CF parents are doing in terms of diet so note to bring on heart attacks in their kids later. Good luck and best.
Last thing...i know this is a long shot, and you already know but one food they give malnourished babies abroad was avocado, so fatty but all good fat. Its not typically baby fare but she may grow into it.
Robin
I was also going to recommend avocado. My 17 mo old son w/ WS LOVES it. I puree it, freeze it in ice cube trays, and then pull them out and thaw as needed. They go bad fast so this helps.
EVOO or other fatty acids are also good. I add a teaspoon of flaxseed oil to my son's cereal. It's high in Omega 3 and 6 and has about 8 g of good fat in it.
And FYI, my son was exactly the same size as Amina at 13 mos. As long as he was gaining we were told he was ok. He was on his own curve and that was fine. Go figure.
Good luck!
Ginneh,
I have know idea what Amina weighs and I am not sure of her age, but Noah is almost 2 1/2 and only weighs 21 lbs. His doctors don't seemed to concerned. Amina actually looks about like he does and I don't think they look to unhealthy. I read it somewhere I think here on the blog that a doctor who specializes in WS stated that she thinks it is Gods way of taking care of them because there little hearts couldn't handle them being to big. Sounds pretty logical to me. Take care.
Julie
We visited the feeding team at CHOP and never returned to that department due to their ridiculous recommendations. They told us the same thing (adding fats) plus they contradicted what Dr. Kaplan told us. Dr. Kaplan said do not worry about Gianna's weight and that she will be better off in the future if she stays thin. Gianna is on the thin side but not malnourished. Even her regular pediatrician says her weight is fine. Don't stress over it..... just follow your instincts. I think you are doing a great job!!
Amina is 30 inches long and weighs 18lbs 6oz. I think. Her regular pediatrician says she is fine also. I'm going to call her pediatrician as well as the Williams Clinic doctor to get their take on the feeding teams recommendations. I think I'm going to leave the Duocal for now and just be more aggressive about finding foods she likes and giving her time to eat. She's been growing consistently and has not lost any weight.
Just a random tidbit of info, I have no idea if Medical Assitance will help you with the duocal or not. I know if your child needs a special formula then they will help, so that might be something to look into if you decide to go that route.
Connor is tall, around 36 inches and around 25 or 26 pounds. He also looks very thin, but i think it's also because of his height. Dr. Kaplan said the same thing that Gina said, that they believe it's better for them to be on the thin side than to be fed too many extra oils and fats. I agree.
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