We asked, you answered. Now vote for your favorite research questions by clicking on this ticker!!         


Feedback
Cystic Fibrosis Questions - No Appetite?!
Invite a friend nevermind
To:

Please verify that you are human and type the word "CysticLife" (Case Sensitive)
Why should you join CysticLife?
Joining CysticLife.org will give you full access to all features - including all questions, blogs, members, comments and replies.
No Appetite?!
Dec 01, 2011 at 10:55 AM
Eating has always been a struggle for my 2 year old. Ever since he was on formula, it was a fight to make him drink. I kept telling myself that this would get better as he got older and was able to try different things. The problem is, it's not getting better at all. My family and I have tried everything under the sun that we can think of to offer him to eat. I know that CF kids are supposed to consume 50% more calories than healthy kids and to be honest, I'm having trouble even getting him to consume what most healthy kids do! As of now he is pancreatic sufficient.

He refuses the normal kid favorites like mac and cheese, grilled cheese, and any kind of meat all together other than occasionally a weiner or chicken nugget. He also refuses to drink anything with milk or any kind of pediasure or 'milk like' product. This makes it hard to hide any extra calories. One thing I can usually make him eat is yogurt or pudding with heavy whipping cream. And we do this at least once a day. He used to eat mashed potatoes but now he refuses them too.

We are just about at our limits, and it seems like every meal ends with tears for both of us. Not only is it stressing me out, but it obviously stresses him too. His nutritionist is saying it's probably just a phase and that we're doing everything we can do. I just wonder if there's more. I read about Scandical today (something my clinic had never mentioned before, but could easily be added to his juice) and I ordered 2 of them..can't wait to try them! I need some help from other moms who are going through the same thing. Are there any other products like 'scandical' or can anyone offer advice on adding calories and fat to his diet when he seems to have NO appetite? (Keep in mind he refuses Pediasure, Boost, or anything with mlk)
Answers
Thanks so much for all the tips and advice. I wanted to give you a little update. My son had never had a problem with reflux (at least we thought) until recently. The week of Thanksgiving, he threw up on three different occasions, completely random. Two of the times were in the middle of the night, and once was while he was eating. After speaking with his clinic they started him on Zantac twice a day.

We picked it up and started it the day after I wrote this question. To my surprise, he has been like a totally different child since then (in a good way!) He's eating so many different things now, and his appetite has really picked up! He's eating big meals and constantly snacking. After the first couple days, my husband and I were cautiously optimistic that it was the zantac. It's been almost a week and he's still eating great! To the clinic's surprise, even as a baby he very seldom spit up, so we never considered that he had an issue. I'm still not sure if it was the zantac, or a growth spurt that has made his appetite pick up, but either way, I'm very greatful. It's like a huge burden had been lifted from me!

I did receive his Scandical in the mail yesterday and so we're begining to use that as well. Hopefully this good streak will continue! Thanks so much for all the advice and tips. If he resorts back to his old ways, I'll probably try the tip from Jill and Melissa. :)
Dec 07, 2011 at 12:35 PM
I have to agree with Jill on this one. Our son was the same way, just would not eat. The doctors had already discussed a feeding tube with us, which I refused until I had exhausted all other options. We decided to go a very similar route as Jill, we just ignored him at meal time. If he ate what was in front of him that was fine and if he didnt then that was fine too. We no longer bribe him, tease him, beg, etc for him to take a bite. The only rule he has is that he has to drink his milk before he can leave the table. We have seen a huge increase in his eating and he even asks to get a snack every now and then. If you think about it, they have no control over their lives at that age and even more so for the CFers because they HAVE to sit so long for treatments and all that fun stuff. So, make them think they have control over something and they will not push against you anymore. My son had total control over meal times anyways cause as much as we would like to be able to reason with a 2 year old it is not possible, so we just stopped showing him that he had total control and it worked. As for the feeding specialist, we took our daughter who is not 3 to a feeding clinic because she would not eat when she was about 2 and they were not able to tell us anything about her eating habits. It was a total waste of our time and money. So, I would look into the results they usually get before going that route. But, our daughter who is now 3 magically started eating one day and the clinic recently told us to cut back on her calorie intake as she is getting a little on the chunky side!! So it will get better, just stop letting them know that they have the control and they will not hold it over your head any more!
Dec 07, 2011 at 11:59 AM
I have to agree with Jill on this one. Our son was the same way, just would not eat. The doctors had already discussed a feeding tube with us, which I refused until I had exhausted all other options. We decided to go a very similar route as Jill, we just ignored him at meal time. If he ate what was in front of him that was fine and if he didnt then that was fine too. We no longer bribe him, tease him, beg, etc for him to take a bite. The only rule he has is that he has to drink his milk before he can leave the table. We have seen a huge increase in his eating and he even asks to get a snack every now and then. If you think about it, they have no control over their lives at that age and even more so for the CFers because they HAVE to sit so long for treatments and all that fun stuff. So, make them think they have control over something and they will not push against you anymore. My son had total control over meal times anyways cause as much as we would like to be able to reason with a 2 year old it is not possible, so we just stopped showing him that he had total control and it worked. As for the feeding specialist, we took our daughter who is not 3 to a feeding clinic because she would not eat when she was about 2 and they were not able to tell us anything about her eating habits. It was a total waste of our time and money. So, I would look into the results they usually get before going that route. But, our daughter who is now 3 magically started eating one day and the clinic recently told us to cut back on her calorie intake as she is getting a little on the chunky side!! So it will get better, just stop letting them know that they have the control and they will not hold it over your head any more!
Dec 07, 2011 at 11:59 AM
I totally understand. Our son is 4 1/2 years old. He was diagnosed just shy of being three. Before his diagnosis he ate and ate. He is pancreatic insufficient and he at a lot. But, after being put on enzymes this slowed way down. It has been an ongoing struggle. In the beginning while we were trying to really bump up his weight I put BeneCalorie in his yogurt. It's made by Nestle. It worked very well. He never noticed it and I never let him see me put in in the yogurt. We also fed him a lot of bacon! He loves animal crackers. Have you tried those? Raisinettes? Cashews? Wavy BBQ Lays? These are some of his favorite high calorie items. We just kept trying anything and everything we thought he might like. Chocolate chip granola bars are one of his favorites and sometimes the only thing I can get his to eat. I know it is difficult and I stressed BIG TIME! Our son wouldn't drink Pediasure etc. either....none of it. He was drinking milk and then stopped. So I tried adding chocolate syrup to it and that didn't work either. However, when we tried Borden chocolate milk he loved it! Borden or TruMOO but nothing else. Hope some of these ideas help. Has your doctor considered Periactin as an appetite stimulant? That helped us greatly.
Dec 03, 2011 at 9:56 PM
Brandy - I think you are sadly in the majority here with our little ones! The stress we feel (even if we don't show it) is obvious to the kids and it makes everything worse - we have been there (and still are on occassion) but one night when my 3.5 year old said to me (right before he fell asleep) that he didn't want to eat - I KNEW we had to do something because it caused him anxiety ALL the time - he worried ALL the time that we were going to talk about food, sit down and eat and/or have a bad time doing it. I cried and changed all in one breath.
Me and my hubby agreed (even though we thought it could be a short term step backwards) to stop discussing food, asking him to eat, or even inviting him to the table for dinner. The decision was the scary part - the rest turned out easy. He almost immediately starting asking to eat, wanting whatever we had, trying what was on our plates (because he didn't have one) - and amazingly in ONE WEEK he gained 200grams - REALLY! But the stress went away for him along with the anxiety.
I do know it won't work for everyone, but it was amazing - it was all about control and I gave it to him 100% as to decide when he was hungry and wanted to join us or not (and he does 95% of the time - doesn't like to be left out!). I have also turn down his requests for dessert when he didn't eat his dinner (CRAZY HUH??!!) but turns out it makes him want it more when I say "NO" to his favorite things (which are not what other kids like either - there is no hot dogs, chicken nuggets or grilled cheese here). He likes fun things - like I let him dip his cookies in frosting (no spoon or knife, just go for it and get dirty - he's a boy:-))
This has been going on for about 3 months and still working.
I feel for you as does EVERY Mom of a little CF one - hang in there!!!
Dec 03, 2011 at 8:37 PM
Definitely look into a feeding specialist!!!

We have been dealing with the issue for 7 years and man do I wish we had a feeding specialist early on!

We make supplemental drinks with coconut milk, coconut oil and fruits. I make sure to get 3 into my picky 7 year old a day. I also found drinks that he likes that he drinks after every meal, to make sure he gets some calories in. He likes rice milk, mixed with goats milk, pineapple juice and orange juice...all have at least 120 calories per cup
I also make my own yogurt using half and half (got to get as many calories in as possible) and I mix in some applesauce and give that at every breakfast and dinner
blessings,
missa
Dec 02, 2011 at 12:49 AM
I noticed you put that he takes Creon...If he is PS he shouldn't be on enzymes..maybe that is the problen. Meals are my biggest stresser w/ CF...I, however do not allow her to see my stress..I actually distract her and sometimes spoon feed her just to get her to eat.
Dec 02, 2011 at 12:04 AM
Any signs that would make you think that he is not pancreatic sufficient anymore? Does it look like his tummy might be hurting? That could explain the no appetite part. Just something to consider. That being said, it might have nothing to do with it! I also have a 2 years old and it`s hard to tell what's going on in their heads sometimes! If he's PS I don't think that he needs to eat more than any other kids though. He should do great on a normal diet.
Dec 01, 2011 at 3:25 PM
you could try adding scandishake ( not sure if this is the same as scandical) powder to yogurt, homemade muffins or cookies. If he will eat soup try adding olive oil. Or you could substitue almond (flour) for some regular flour in home baked goods. I also will some times just offer bread or toast with a lot of butter if desperate :) Dipping apples in peanut butter or almond butter. I am sure it is just a phase.
Dec 01, 2011 at 2:55 PM
My son who does not have Cf is putting me through this struggle right now - doesn't want to eat or drink - ever since introducing table food it's been a battle. Has your son always been this way , sounds like he has? Has anyone ever suggested to go to a feeding specialist? I'm debating to do that with my son.

But as for something you can try now are the Ensure Enlive Therapeutic nutrition drink. Think they come in different flavors, we have Apple. There are 200 calories, 7 g of protein in this juice. Ask your clinic how you get your hands on these - another cf mom gave them to me and I know through cf care forward program you can select to get free ones?
Dec 01, 2011 at 12:57 PM
CysticLife Resources
Informational and educational
videos, reading materials and links.
Non-Member Features
Non-members have the ability
to browse community pages
Member Features
Members have full access
to all user-generated content
Find Us Online
See what else
we're doing online
CysticLife Grant
CF-related activity, medical,
and educational grants
The content on CysticLife.org is not medical advice. Be sure to consult a medical professional when determining which course of treatment is best for you or your loved ones.