Yesterday I wrote about the fact that Ella would need a high salt, high fat diet. I'm not sure that I was correct in stating "high fat." The fact is that CFers have a hard time maintaining weight, and so they need a high calorie diet. There is a difference there. Because the pancreas is often insufficient, malabsorption is a problem. Infants who are not screened at birth often present with "failure to thrive." They don't gain weight and don't absorb nutrients.
For that reason it is necessary to take enzymes before eating and supplementing the diet with fat soluble vitamins, A, D, E, and K. I know in reading in the forum that parents are always looking for high calorie snacks and recipes to feed their children to help them gain weight. I look at some of those recipes and think to myself, "M-m-m, good," and then I realize that I would be bigger than I am now if I ate them.
One mom wrote that they had a separate cabinet for their child's snacks because she (the mom) had gained so much weight. I do read that often they add extra butter and cream to recipes, so there's something about the extra fat. Not being a nutritionist nor an expert in CF, I don't understand it all.
Recently there is the over the counter diet pill which prevents absorption. If you listen to the ads and facts about it, some of the side effects are what CFers have if they're not on a regimen of enzymes. As one of them wrote, "Why would anyone pay $60 a month to be like us?"
I would recommend a blog to you. Lauren, a young woman in California with CF, has an educational blog, Blogging about CF. She explains so much about the condition. I hope someday that she publishes her material. There is a wealth of information there.
6 comments:
Learn something new everyday!
I don't think I will be using the new diet pill. The side effects are dire! I need to lose 10-15 lbs., but the very thought of it sets me to eating....LOL
Thanks for the information. Its very interesting.
Your granddaughter is certianly a sweety pie. I'm sure she gets a steady diet of hugs and kisses.
I'm like Kenju I would like to take off a few pounds, but the idea of it just sends me looking for chocolate. I did not know that people with CF had a problem maintaining weight. Isn't that always the way? Those of us who don't want it can't give it away and those that need it can't get it.
Ella looks like she is doing very well in the department of growth. I know Nyssa had a bout of ear infections when she was about seven months old and didn't gain any weight for two months... at one year she only weighed about 16lbs. She was the only child I ever knew that actually wore out clothes that first year.
Morning Beverly,
Just wanted to say Hi and glad you had a safe trip and plenty of fun !
I'm glad litl Ella got introduced to chocalate ice cream and its always gave me a big lift when seeing the smiling faces afterwards , expressing happiness and joy and love ?
Used to make their momies look and say you can clean them up but I just say that's one of grandpa's priveleges ?
Blessings to you and your family .
Ron.
I so hope little Ella is able to maintain a healthy weight. This must be so concerning to you. Thank goodness for the internet and the bountiful information and support it offers.
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