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My daughter HAs cystic Fibrosis adn has the hardest time gaining weight she is almost 3yrs lod and weighs 26lbs if she doeesnt take her pancratic enzymes she loses a lot of fats so every meal snack she has to have it also she also has a special shake every day its called scadishakes it is 600 calories and she drinks at least 2 of those a day and all she can have is high calorie high fat meals withthe disease it casues poor weight gain i know its a lung disease but it effects every part of the body
i better introduce my self
my name is Amy im from mass
i have 2 daughters one with cystic fibrosis 2 1/2
and one 4 months
I cant waitto get to know all you women
Posting for Patty. She is the host of this board and I know she would be upset if you weren't properly welcomed. She is offline right now taking a little time off before her baby comes so I thought I'd pop in and give you a welcome. I myself have not had any issues with weight gain with any of my children, but I know Patty has struggled a lot with weight gain over the past couple years. Anyhooo, welcome to the group, hopefully the other gals will be around soon too.
THANK YOU SO MUCH FOR THE WARM WELCOME. I CANT WAITTO GET TALKING WITH EVERYONE MY ALYSSA REALLY HAS THE HARDEST TIME PUTTING ON WEIGHT AN DWHAT DONT HELP IS WHEN SHE GETS A LITTLE COLD OR SO WE JUST HAD COME DOWN WITH SOMETHING THE OTHER DAY TEMP WAS SO HIGH ANDSHE HASNT EATEN NOW FOR 2 DAYS AND SHE IS FINALLY FEELING BETTER BUT NO STAMINA FOR FOOD SO I NEED TO GET GOING ON HER SCANDISHAKES AGAIN UGH! SHE GETS WEIGHED ON zoCT 5TH TO SEE IF SHE PUT ON ANY AND THIS VIRAL PUTS US THE WRONG DIRECTIONGRRRR. SOME KIDS HER AGE AND OLDER HAVE FEEDING TUBES AND I DONT WANT THAT
Welcome. She's getting to an age where if she gets sick can understand that even if she doesn't feel like eating having the shakes can help her. Even if she doesn't finish them, whatever she does take in will help keep her from losing weight.
How often does she get weighed? Nadia was 27lbs at 3years(April), she had suddenly gained 2lbs the 2 weeks before her birthday. She's never gained that much that quickly. She has gained another 1 or 2 lbs since then. She actually has fat on her, she's never had that before.
usually she has to be weighed every 3months with her pulmonary dr and when she doesnt seem lie she gaining every 2 wks with her peditrician. usually she doesnt gain weight for a good six months or more she has been 24lbs for good 8 months then we saw the dr in aug she didnt put any on so they wanted her to see the nutrtionist the next time she comes in witch will be nov 3rd she is right now 25lbs as of yesterday at her peitricians so its tough. so hopefuuly the skaes there 600 calories per 8oz of whole milk there given by her dr at childrens but the manifacture that puts out one of her enzymes supplies them for frre a months worht when ever we get a month supplie of pancreatic enzymes filled we use thos becasue he pancrease doesnt work at all and there suspose to help absorb fats but she lets alot more out than retaining. i hope we can getup to 27lbs by the time she is 3 and that will be in December