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appetite theory
- Thread starter anonymous
- Start date
One theory is before they were diagnosed their bodies needed more calories and fats. Their bodies were not able to digest all of the food, so they ate more to make up for this loss. Now that they are on enzymes, they are digesting better and do not need as many calories as before.
On the other hand, I have a one and three year old with cf. They do not have much of an appetite either. I know it has to be cf related. They eat so much less than other kids their age. One of the cf doctor I spoke with last week was telling me about the stomach pains that cf kids often have that might subconsciously cause them to eat less since they associate food with tummy aches.
Are they eating less because somehow their is an overemphasis on how much they eat?? Who knows?? I would love to know why it is so hard to get my kids to eat.
Sharon, mom to Sophia, 3 and Jack, 18 month both with cf
On the other hand, I have a one and three year old with cf. They do not have much of an appetite either. I know it has to be cf related. They eat so much less than other kids their age. One of the cf doctor I spoke with last week was telling me about the stomach pains that cf kids often have that might subconsciously cause them to eat less since they associate food with tummy aches.
Are they eating less because somehow their is an overemphasis on how much they eat?? Who knows?? I would love to know why it is so hard to get my kids to eat.
Sharon, mom to Sophia, 3 and Jack, 18 month both with cf
thefrogprincess
New member
There are 2 kinds of CF patients, the ones that eat anything that doesn't eat them first, and the ones that eat almost nothing. The idea that kids associate food with stomach aches can be totally true. That's what happened with my brother. He used to eat everything when he was a toddler. As he got older certain foods would upset his stomach so he became the pickiest eater ever. When he was in 5th grade he had a g-tube placed and did great on it, gained weight, grew. When he was about 17 he had it removed because he could no longer tolerate any of the formulas for the tube. The dietician at our clinic keeps trying to get him to eat more but he just won't.
I asked my husband if he had problems with eating and digesting when he was younger and he said it's kind of a catch 22. He remembers being really hungry and wanting to eat, but then when he did eat his stomach would go into knots and hurt so bad and he would keep having to go to the bathroom. So you could be right on with that thought Sharon.
One question I have, (please keep in mind I don't have a little CFer so I may be way off here) but are your kids getting solid foods for every meal and every snack? My husband has found that sometimes it helps his stomach (he has DF508, with digestive issues) to not eat so much solid food and supplement with protein shakes. He will still usually have 3 solid meals a day, but for his first meal of the day he will have a protein shake/drink to start his system off clean. Once he starts moving around for the day he will have a meal with some solid food (sandwich, burger or whatever) then for his next snack he will have 2 or 3 boost shakes. He'll have solid food a little after 1 or2 pm (sandwich, burger, stroganoff, whatever is in the fridge or if he feels like cooking). Then he'll have another protein shake and sometimes some soft food. Then dinner is always a meal, but any snacks after dinner time are soft foods like icecream, boost plus shake, or protein shake (if he is that hungry). He says this helps him so his system doesn't get so backed up. Even with the enzymes (and in his 24 years he has tried every brand that is out there) there is still some pain and back up and excessive bathroom use.
I don't know what the thought and research is on kids and proteins shakes (what the long term effects might be). I know pediasure makes supplemental shakes, and the makers of the enzyme Creon make a nestle brand protein/supplement shake that can be used by kids, and Ultrase also makes the Scandi shakes. I might be something worth looking into if the stomach pains and lack of appetite continue to be a problem. The supplements from the above mentioned pharmaceutical companies are free to patients who use their enzymes. Can't hurt to try something for free. I have some scandi shakes that my husband doesn't use (he prefers the boost) if you would like I can mail them to you.
Julie (wife to Mark 24 w/CF)
One question I have, (please keep in mind I don't have a little CFer so I may be way off here) but are your kids getting solid foods for every meal and every snack? My husband has found that sometimes it helps his stomach (he has DF508, with digestive issues) to not eat so much solid food and supplement with protein shakes. He will still usually have 3 solid meals a day, but for his first meal of the day he will have a protein shake/drink to start his system off clean. Once he starts moving around for the day he will have a meal with some solid food (sandwich, burger or whatever) then for his next snack he will have 2 or 3 boost shakes. He'll have solid food a little after 1 or2 pm (sandwich, burger, stroganoff, whatever is in the fridge or if he feels like cooking). Then he'll have another protein shake and sometimes some soft food. Then dinner is always a meal, but any snacks after dinner time are soft foods like icecream, boost plus shake, or protein shake (if he is that hungry). He says this helps him so his system doesn't get so backed up. Even with the enzymes (and in his 24 years he has tried every brand that is out there) there is still some pain and back up and excessive bathroom use.
I don't know what the thought and research is on kids and proteins shakes (what the long term effects might be). I know pediasure makes supplemental shakes, and the makers of the enzyme Creon make a nestle brand protein/supplement shake that can be used by kids, and Ultrase also makes the Scandi shakes. I might be something worth looking into if the stomach pains and lack of appetite continue to be a problem. The supplements from the above mentioned pharmaceutical companies are free to patients who use their enzymes. Can't hurt to try something for free. I have some scandi shakes that my husband doesn't use (he prefers the boost) if you would like I can mail them to you.
Julie (wife to Mark 24 w/CF)
Thank you so much for all of your opinions/ideas. The doctors blow us off when we talk to them about the meds causing it and just tell us to "try harder" to feed them. I do think they used to eat more to make up for the loss but now it's so totally opposite that it's dangerous! Julie- it's so helpful to know what your husband does for his digestive problems. My youngest only wants to drink the majority of the time, maybe without being able to explain it, she knows that she feels better without taking in too many solids. Thanks again everybody.
Good to hear we were all able to assist you a little. I showed my husband your response, about your little one who prefers drinks to solids, and he thinks you are probably right on about that. If you are interested in the products that you can get free from the enzyme companies, I will look up the links and post them here. I know for sure the makers of Creon have a nestle shake for CFers, and the makers of Ultrase MT's (the Scanid compay-scandical, scandipharm) have shakes as well.
Hope this gets resolved for you soon, and please let us know if you try something that works. I am sure there will be questions from other parents with this same problem, so it would be great to hear if you try something that your kids love and helps with the weight/appetite.
Julie (wife to Mark 24 w/CF)
Hope this gets resolved for you soon, and please let us know if you try something that works. I am sure there will be questions from other parents with this same problem, so it would be great to hear if you try something that your kids love and helps with the weight/appetite.
Julie (wife to Mark 24 w/CF)
thefrogprincess
New member
I'm interested to know if any of those shakes actually taste good! My dietician is always giving me samples of different ones and they all make me gag. Ensure is the worst! My mom used to put those in my lunch and that's all I got to drink. I usually threw it away and bought milk. Haha. I finally told my mom that I wasn't going to touch the stuff for as long as I lived and she stopped getting it.
caleb has his days where he will eat everything and anything in site.. (he is 3.5)... but then he go for days where he will only eat crackers, fruitsnacks and pediasure... his eating is all messed up and its been that way ever since he stoped nursing.... he also likes scandishake.. so when he is having his i dont want to eat days he still gets something in his belly that is good for him
Melissa
Melissa
My child are 5 y o now, but when she was baby often drinks pediasure. It helps soooo much! Was good taste and she grow up!Now we didn't find here( Romania!) On the other hand she had stomach pains at the breakfast usualy. When her apetite is coming down I'm like a crazy, because our doctor tell us that's is a sign her germs become much more(uah, my english is sooo bad!)
carmenada
carmenada
When our son was not eating much and we were battling the food push, he complained of alot of tummy aches, and we ignored it for awhile thinking it was because we were stretching his stomach, well it ended up to be acid reflux and quite bad! Poor Sam, he now takes prilosec 2 x a day and Reglan 4 x
a day. The stomach aches from the reflux is gone.....This finding increased his willingness to eat!
Ask your CF Team about this possibility maybe the GI doc can advise you. Our son is 7 and we struggle with food intake for sure....HE loves chocolate BOOST..has 4 cans per day, plus insurance covers it!!!! I like that part.
Best wishes, MURGIE
a day. The stomach aches from the reflux is gone.....This finding increased his willingness to eat!
Ask your CF Team about this possibility maybe the GI doc can advise you. Our son is 7 and we struggle with food intake for sure....HE loves chocolate BOOST..has 4 cans per day, plus insurance covers it!!!! I like that part.
Best wishes, MURGIE