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Waitn4cure

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Hi My name is Katy and I am a mom of 3 kids Grace 13 NCF, Micah 7 CF and Elijah 5 CF. WE are currently in the hospital right now that started out as a tune up for micah now it has changed to a nutritional concern. Micah is loosing weight pretty fast and it seems that he just can't keep it on at all. Right now also it has also been very hard to get him to eat he just has no intrest in it. If there are any ideas on how to get him to eat that would be wonderful. Thank you Katy
 

anonymous

New member
I can really understand your concern. My daughter is now 19 and robust, but when she was 5 until about 9, she was terribly thin and we were constantly trying to fatten her up. What worked for her was a round of tobi and cipro--she also started on pulmozyme at about that time. The other thing that made a huge difference in her life was to start getting a lot of exercise. Between all the antibiotics and starting dance lessons 3 - 5 times a week, she regained her appetite. It is such a difficult cycle--their lung function drops and then they do not have enough energy to run around so they are not very hungry and we as parents want them to eat more and that does not feel so good to them either. My daughter's appetite really grew with exercise--after awhile we didn't have to make her cereal with cream anymore! Good luck--I know how hard it is to see them look skinny and not be hungry. One more thing--have you tried pancrecarb for enzymes? Also great for adding weight.
 

anonymous

New member
Hi. I'm a 29 yr-old woman w/CF. During my last hospitalization I had lost a lot of weight and was pretty sick. Docs/friends/families were concerened about my weight and kept focusing on it. While in the hospital they kept baggering me to eat, but the more they focused on food, the less interest I had in it. In the end, it just took time and patience. I didn't gain the weight back while in the hospital, but once home and back to my normal routine (and feeling so much better) I gained a healthy amount back. I needed some time for the medicine to take effect and to return to an environment where food was more social (people eating around me) than "medical". Every person is different so I'm not sure what will work for your son. Just know that once the medicine takes effect it will help. He'll feel better...his body won't have to focus so much on fighting the infection and he'll get his appetite back...at least that is what happened for me.
 

bristyc

New member
Katy,Hey. I am 26 now, but at 13, I went through this problem. I just lost interest in eating. At that age (I'm a teacher now of 5th and 6th year olds), girls begin to notice other girls' habits. I had always been small, but suddenly none of my friends wanted to spend break eating, we wanted to flirt and play. I also began to play basketball. I woke up one morning, and my stomach hurt so bad I thought my insides were falling out. Of course, my mom ran me to my doctor. He sat me on the little table, and felt of my tummy. He sat me back up and asked me if I was eating. I said yes. My mom corrected me! He asked me if I wanted to get married some day, and I said yes. He proceeded to tell me that I was not lucky enough to gamble the way my friends were. He told me if I did not swear to eat 3 great meals a day, he would put me in the hospital on IV's until I gained enough weight. I had never been in the hospital, so this scared the daylights out of me. He told me i would die if I did not take control. He told my mom I could have no cokes, and I got to experience my first enema (I don't know how to spell that). Well, needless to say, he got his point across. Oh, I was allowed to refuse any food. I learned to enjoy brussel sprouts. In a few weeks, I was enjoying food! I am telling you this to say that a lot of kids go through this. I didn't have to have antibiotics over this, but I had to have fiber and all of that. Just stress the importance. Up until that point, I thought I was normal and could do what others did. If this doctor had not cared enough to give it to me straight, I probably would have wasted away. I am now at a healthy 120, but it fluctuates according to the season. When it dips to 120, in comes the nutritionists offering me Carnation Instant Breakfasts and milkshakes, and when my weight goes up to 125, I receive praise! Oh, the joys of CF.
 

Dea

New member
I agree about not wanting to eat while in the hospital. Lets face it the food is absolutely awful! I am a 30 yr old female with CF. I was in the hospital during the first week of November ...and only for 4 days. I lost 10 pounds while there...and I couldnt afford to lose any. I'm 5'3 and normally weigh between 98 and 100 pounds. So needless to say the docs were not happy. Anyway....just wanted to say that once a person is at home and back to their own environment...it is easier. It has been a month now since Ive been out...and have only gained 2 pounds back. I dont know how it is for others with CF....but it takes me a while to gain weight back after being sick. Let him eat lots of ice cream...Take care and God Bless!Dea
 

anonymous

New member
Your son is pretty young to be affected by CF Related Diabetes, but it's a HUGE cause of weight loss for us older kids. The more everyone tells me to eat, the more annoyed I get. Instead, try focusing on the NUTRITION side of things, focus on QUALITY, not just quantity. I'm 22 and a whole bunch of side-problems b/c of nutriton issues. Include him in meal planning, educate him on what his body needs (a,d,e,k, high protien, controled sugars, ect.) and let him know what kinds of problems he could run into w/o proper nutrition.Debbie22 yr old w/ cf
 

Waitn4cure

New member
Thank you so much for this .. I really needed to hear what you had to say.. the hospital right now is pressuring him so hard on eating. I am praying and hoping that it will help by just leaving this place. the TPN and Lipids are helping he is gaining by that but my concern to the Dr was thats great about the TPN but what happens when we get him back home off the TPN and Lipids. He is doing a whole lot better today and yesterday almost right back at a 100%. thank you again for your advice Katy
 

Waitn4cure

New member
Thank you for your advice on the education of it all .. It might help. The Dr feels it is a control issue with him it is the only thing he can control right now in his life and he doesn't want to eat so he doesn't. the Dr has finally given him the chose you either eat what is sent it or you drink a Scandi shake if he doesn't do either she has told him that she will use the feeding tube. He didn't like that too much at all and he makes sure that he drinks at least 4 oz's of his scandishakes. To me it's still not enough but I won't push the issue with him to much. Its funny because I have Micah that won't eat much at all and we have to force him then I have Elijah 5 who eats everything in sight and still doesn't gain the weight. =) I think I'm going to just get a life supply of scandishakes and I will be good to go =). Katy
 

anonymous

New member
I have three kids with CF. Two have had weight concerns in not gaining well but I will tell you that they all lose weight when they are in the hospital. Hospital food is just not like home and when you are in there alot, it gets really tiresome. We bring in homemade food and often stop for 'fast-food' to give them a break. We try to have a sit-down dinner with them when they are in the hospital - talk about the day, review homework, tv shows, whatever - just food and conversation. The days are long for these kids and they can only watch so much tv or read by themself for so long. As for weight, we have and do use Scandishakes when they need a boost - add ice cream. I know that they need extra calories but I worry about the sugar they also get. Can anyone with diabetes tell me what to watch for or if there are things that my kids should do that will help prevent / delay diabetes. We already have concerns with all the meds that they take and if there are things that they should or should not do, I'd love to know before we add complications like diabetes or liver problems. Thanks for any info.
 

Dea

New member
Unfortunately....there is no way to prevent or delay diabetes.....it is just the way the pancreas is affected. With some....it may never happen....I am 30 and was diagnosed with it little over 5 yrs ago. You just have to take what u are given and deal with it the best you can. Keep thinking positive....I know its a struggle....God Bless and take careDea
 
I

IG

Guest
I hated when I got put into the hospital because to be honest, the food sucked big time. I'd loose weight and was generally unhappy, and very grumpy. What I've found is a thing called Scandi-Cal. It's like a scandi shake only better it's a powdery- flake thing. It's something that you can put into the food with out it tasting horrible (it desolves), but still gain weight. Also, and I know you are going to hate this, what really kept my weight up was an unlimited supply of chocolate by my bedside. Although I'd have no appetite for food, I could always take a handful of m&ms. Soon that handful turned into several. But with all that sugar exercise is a must, it also boosts the appetite. In the end I was so sick I had to go with the tube because I ate and ate and still lost weight. That is no fun deal, so try to get him to eat. I also kept several things in the nurses freezer so I could heat up that were home cooked. Like mac & cheese and home-made spaghetti, grilled chicken, just easy home made stuff that sounds good to kids. This way it didn't taste bad, and it was on hand whenever you wanted to eat, not just when the trays came around. I also really like the Chicken Voila things that can be taken out of the freezer + water and microwave. Anyway, this is what worked for me, and I hope it helps.~Candice
 

farmfamily

New member
HiI have three children, two with CF. We have struggled with my son's(11) weight since birth my daugter(7) with CF doesn't struggle nearly as much. My son has had a feeding tube for 6 years and still is in the lower %. I don't think is knows hunger or ever has an appetite. He always loses weight in hospital. Part is depression, lack of exercise and I too feel like a lot of his is control. He has so little control over things in his life that that is one thing he can control.Mom of Three
 
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