I have a 1 1/2 year old daughter who was dx with cf at one month old. Her Cf is mild. She has only had one bout of pseudominis with treatment of TOBI and does have colonized MRSA. But she is relatively well. She did have the enzyme test done and it came back as perfect as you can get. My question is, she is ALWAYS hungry. She can eat more in a day than I can. For example: for breakfast this AM she had french toast sticks, scrambled eggs, 2 peices of toast, grapes. Is this common? She literally has to eat every few hours. Is this normal even with normal enzymes? Thanks for your help. Monica
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Dtr always hungry
- Thread starter anonymous
- Start date
Hello,
Most of us have HUGE appetities and don't seem to gain much weight. This is usually due to pancreatic insuffiancy (sp?), but we also require a higher calorie amount than "normal" because our bodies are conatantly fighting infection and working overtime. Keeping weight on is often tough for us when our lung disease progresses, and a drop in appetite can be an indicator that she is not feeling well. Eating every few hours is actually a good thing b/c when she is older, she'll be in the habit of getting in alot of calories.
Is she being treated at a CF center? They should tell you the same thing.
Most of us have HUGE appetities and don't seem to gain much weight. This is usually due to pancreatic insuffiancy (sp?), but we also require a higher calorie amount than "normal" because our bodies are conatantly fighting infection and working overtime. Keeping weight on is often tough for us when our lung disease progresses, and a drop in appetite can be an indicator that she is not feeling well. Eating every few hours is actually a good thing b/c when she is older, she'll be in the habit of getting in alot of calories.
Is she being treated at a CF center? They should tell you the same thing.
Yes, I'd say that is very normal for a child with CF. Also it's a plus for her as it will keep her healthier. My 10 year old can out eat my husband and myself put together and has been able to since she was 3. She is a bottomless pitt...she is never full. On the other hand, my 6 year old barely eats. We have to beg, plead and bribe her to eat. She is weaker and smaller than she should be for her age and I'm sure that's partly why.
I remember when my first daughter was younger and we'd take her to eat at McDonald's or something like that, she'd easily put away 3 happy meals. She'd eat everyone's fries too. And it isn't half an hour till she says she is hungry again. It's a blast taking her to an all you can eat buffet. I know they probably hate to see us come to those places...lol...she eats more than most grown men can. But it's a 2 hour ordeal to take her...it does require patience. The rest of us will be ready to go and she's just getting started.
I remember when my first daughter was younger and we'd take her to eat at McDonald's or something like that, she'd easily put away 3 happy meals. She'd eat everyone's fries too. And it isn't half an hour till she says she is hungry again. It's a blast taking her to an all you can eat buffet. I know they probably hate to see us come to those places...lol...she eats more than most grown men can. But it's a 2 hour ordeal to take her...it does require patience. The rest of us will be ready to go and she's just getting started.
thefrogprincess
New member
I have always had the exact same appetite! I can put away way more than my boyfriend who is roughly twice my weight and a foot taller. My appetite has always been the running joke in the family. I do take enzymes but don't need many and if I forget now and then there is no harm done.
and although a bit of the topic, I thought this the perfect location to interject..... Those of you who have CFers with huge appetites and adults with CF who have huge appetites-are you aware that your EXCESS food expenses (above and beyond what is normal and reasonable for someone your age, weight, height and sex to eat) is considered a MEDICAL DEDUCTION for tax purposes. It can be grouped in with any other medical deductions (copays, share of cost, deductibles, over the counter medications...) and if it adds up to 7.5% or more of your AGI for the tax year, you may benefit by reducing your tax liability???
The tricky part is getting documentation together and finding the laws which govern this provision. If anyone is interested, I have put together some information that might be helpful. Please feel free to email me at division902@hotmail.com
The tricky part is getting documentation together and finding the laws which govern this provision. If anyone is interested, I have put together some information that might be helpful. Please feel free to email me at division902@hotmail.com
My cfer is 15 months old and seems to have the excate opposite problem...she barely eats but her weight is ok? she is on 1 enzyme each feeding. I keep thinking one day she is going to out eat everyone in the house?? I am sure it will come but i do add extra calories of butter etc. b/c of this fact of her not eating??
On that note and to add to what Julie said about the grocery bill... have any of you heard of THE GROCERY GAME?
I have cut my grocery bill in half and have stocked up on so many things!! My pantry is stuffed waiting for the day that Brinly will catch up to her fellow huge appetite cfers!! I have bought a 2nd refridgrator with the $ i have saved!!
If you are interested check it out~ I ALWAYS save minimum 1/2 everytime i go to the store!! Sunday i went and spent $58.00 and saved $72.00!!! You can try it for a month for $1.00 then decide if you want to spend appox. $10.00 a month to save. The way i look at it is i get $10.00 a month of FREE things on the list! So it is well worth it! Sorry i went off i just can't belive the savings!! I used to hate to go to the grocery store now i look forward to it and have become such a smart shopper!!! I trully bet you will love it since your cfers are into eating so much!!!!
Blythe mom to Brinly w/cf and Birgess w/o
Please use me as a refferal
blythe.weston@comcast.net
www.thegrocerygame.com
On that note and to add to what Julie said about the grocery bill... have any of you heard of THE GROCERY GAME?
I have cut my grocery bill in half and have stocked up on so many things!! My pantry is stuffed waiting for the day that Brinly will catch up to her fellow huge appetite cfers!! I have bought a 2nd refridgrator with the $ i have saved!!
If you are interested check it out~ I ALWAYS save minimum 1/2 everytime i go to the store!! Sunday i went and spent $58.00 and saved $72.00!!! You can try it for a month for $1.00 then decide if you want to spend appox. $10.00 a month to save. The way i look at it is i get $10.00 a month of FREE things on the list! So it is well worth it! Sorry i went off i just can't belive the savings!! I used to hate to go to the grocery store now i look forward to it and have become such a smart shopper!!! I trully bet you will love it since your cfers are into eating so much!!!!
Blythe mom to Brinly w/cf and Birgess w/o
Please use me as a refferal
blythe.weston@comcast.net
www.thegrocerygame.com
cfgirl2008
New member
Monica, that is very common with people that have CF but some don't have that big appetiate like other people that have CF. I have a big appetiate but my younger brother don't he also has CF.
Tiffany 15 w/cf
Tiffany 15 w/cf