Feeding woes

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anonymous

New member
Hello all,

I hope everyone is doing well. I'm writing out of a little frustration today. I have a 4 year old w/cf who is having some major feeding issues. Overall, his health is really great! His lungs are clear, etc. At our last clinic visit (December), his weight and height fell around the 50%. We were thrilled with these numbers. But somehow, we always fall back into these behavior issues when it comes to food. My husband and I are honestly at our wits end. My son is losing weight (not a huge amount yet...but headed in that direction) and eating is ALWAYS a battle. We've tried so many different tactics. We've taken classes. We've rewarded good behavior and ignored the bad, used bribes....everything. What success have you found as parents to help your child eat WELL? I'm really needing some good hard honest advice and you guys are always great to give it to me - parents or cf-ers - anyone! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thanks a million,

Carey
 
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vampress

New member
hi carey,
well my daughter is exctly the same, she must be the only child in the world who dosnt like chocolate and sweets! weve also tried everything...shes 9 now and is still just as bad and is struggling with her weight too, we try for months for het to put on like 2 pound! then one cough and cold later and shes lost 4 pound! you cant win, we put butter in her soups, spaghetti ect ( she dosnt know! she just says its creamy!!!) so theres a tip for you, also if he likes milk, mix it half milk half cream...yummy! unfortunatly i doubt he`ll grow out of it, chloe never has, shes also on fortijuice it has 300 calories per 200mls and no fat so she dosnt have to take her creon, cant think of anything else really..my other daughter who dosnt have cf eats like a horse, i just wish they could swap appitites!
x
 
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nobody

New member
Check with your dietician, Scandi makes a caloric boost powder that is tastless!! Apply it like salt, and I can't tell its there, most of the time!
-steve
 
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anonymous

New member
Thanks, guys. We have gotten pretty good at adding calories and fat to whatever he is eating...the problem is just getting him to actually put it in his mouth. We have a real battle here. That's why I've been asking all about the g-tube. What we're doing simply isn't working.
 
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HollyCatheryn

New member
You may or may not already be doing these things so I'm just going to throw them out there. 1) let him eat any and every time he's hungry2) send snacks with him if he goes to preschool (to eat between their snack times or replace their snacks with something that better meets his needs3) keep snacks in the car4) offer snacks when he's busy doing other things. This way he may not notice that he's eating5) take the pressure off - he may be resisting the emphasis that you are placing on food. He may need control - especially if he doesn't have control over pills or treatments. It's better to let him stop eating, have a little control, and then get a talking to from his doctor about the lost weight. Sometimes things are easier to hear from doctors than parents. His dr. can talk directly to him (if he doesn't already, he should) and say something like, "I noticed that your weight dot was up here last visit and now it's down here. That makes me sad because I don't want you to be sick. I want you to be strong and have lots of energy to do fun things. Your body can't be strong and healthy without lots of good food. Lets sit down and think about some good foods that you'd like your mom and dad to keep for you."6) try Reliv - it's a nutritional supplement that has made a big difference for me and has helped my weight become more stable. My daughter takes the Kids Now! in vanilla and loves it. There's also chocolate which tastes like chocolate milk, but its got lots of vitamins, minerals and calories specially balanced to be easily absorbed which is SO important for people with CF. I don't even have to take enzymes with my Reliv shakes. Check out <A href="http://www.reliv.com">www.reliv.com</A> and <A href="http://www.relivonline.com/StevenShute">www.relivonline.com/StevenShute</A> Steven is my distributor and can get you in touch with other people with CF who are taking Reliv and getting results. My experience can be read at <A href="http://www.geocities.com/murrensnaturemama/Reliv">www.geocities.com/murrensnaturemama/Reliv</A>7) listen to the reasons. Why is often more important than what. He may not be eating, but why? Does he need the control? Does he dislike the sensation of an overly full tummy?I hope some of this might help you. Feel free to email me at <A href="mailto:jaloughlin3@sbcglobal.net">jaloughlin3@sbcglobal.net</A> if you want
 
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anonymous

New member
I know it is very hard for us with kids with cf to not be in charge of how much they eat, but if your son is at 50% for weight and height, why are there major eating issues?? It sounds like you don't need to be concerned about his weight now. Eating is a battle for a lot parents who kids don't have any medical issues. It just goes with the territory of raising kids sometimes, so try not to stress over it if you can. How do you know if he has lost weight since December? Why would you need to weight him is he is doing very well with his weight? You should just sit back and try to let him be in control of how much he eats. As you probably have learned, you are only in control of what and when he eats, not how much. If he doesn't want to eat ask yourself what most parents would do, not what a cf parent should do. I think we tend to freak out and kids pick up on this and that could be why there are so many feeding problems with cf kids. Your son has enough weight on him that he can skip a meal if he wants to and just eat a few bites here and there and he should do fine, he will get the calories he needs.

I have a three and a half year of girl with cf and a 17 month old son with cf. We have had major eating issues with my daughter. Long story, but we are finally at a place where she is succeeding and gaining weight. Eating is no longer a battle time and she is enjoying the dinner table. My son was 75% for weight the other day. I can't tell you how many times he has refused to eat a bite of his meal in the past month or two. I just put him down from the table when he says no to the plate and pushes it away. He will get the calories he needs later in the day or tomorrow. I have had much more success with this method than what I used to do for my daughter (really enourage eating when she said no).

I also just posted to "G-Tube- Any Good Stories??" I listed some other ideas that might help you there.
Sharon, mom to Sophia, 3 and Jack, 17 months both with cf
 
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anonymous

New member
bologna, hot dogs, cheese, pizza, mcdonalds, etc. Try these...it doesn't sound healthy to the norm, but for our kids, it is a life saver <img src="i/expressions/face-icon-small-smile.gif" border="0"> also, add butter to EVERYTHING!!!!!
 
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anonymous

New member
GOSH YOU GUYS ARE EXPERTS!! I'VE BEEN FEELING LIKE I'M KNOWING ALOT IN MY 2 YEARS WITH CHASTEN, BUT EVERYBODY HAS SUCH GREAT KNOWLEDGE HERE. I'M GETTING SUPER IDEAS FROM YOU ALL. HEY, I KNOW WHAT YOU MEAN ABOUT WORRYING ABOUT THE WEIGHT/EATING ISSUES. CHASTEN HAS AWAYS BEEN IN THE 50TH PERCENTILE BUT I ALWAYS WANT TO SEE JUST A LITTLE MORE THAN THAT EVEN THOUGH I REALIZE THAT SHE'S DOING GREAT WHERE SHE IS. I THINK AS LONG AS YOU'RE DOING ALL YOU CAN DO TO GET HIM TO EAT WELL, THEN MAYBE YOU JUST HAVE TO LET GO A LITTLE AND SEE WHAT HAPPENS. IT SEEMS TO HELP A LITTLE WITH MY DAUGHTER IF I GIVE HER MORE TIME BETWEEN FEEDINGS. MY PROBLEM WITH HER, IS SHE EATS OK AND EVEN TAKES HER PEDISURE OK BUT DRINKS LITTLE IN THE WAY OF JUICE OR WATER THROUGH THE DAY. I THINK THIS IS WHERE SOME OF HER CONSTIPATION PROBLEMS COME FROM...WE GIVE HER MIRLAX EVERY OTHER DAY BUT SOMETIMES ITS HARD TO GET HER TO EVEN DRINK ENOUGH LIQUID TO TAKE IT IN. ANY SUGGESTIONS OUT THERE? WE'VE ADJUSTED HER ENZYMES AND THE DOCS FEEL THAT'S NOT THE PROBLEM AS FAR AS CONSTIPATION GOES.
 
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anonymous

New member
Emily, Sharon, Holly & everyone else, thanks for all your suggestions. The last few days have actually been ok! I feel like we have made some headway. Our cf dietician encouraged me to start a food journal and log what my son ate for 3 days. I was actually pretty surprised at the amount of fat and calories he was consuming. And whoever posted it was right, I really need to relax. I know my son can sense when I start to stress about his eating...it becomes very counter-productive. Sometimes you just need a reminder. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey
 
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anonymous

New member
We have the same eating habit trouble with our daughter, although she remains in the 65 - 75% for her weight. She LOVES butter, so, if she wants a scoop, I give it to her. She has even said to me, "mommy, only CF kids can eat butter like this, huh?!" She also likes hot dogs, McDonalds, etc. so I pretty much give her what she wants (within reason of course) just to get her to gain, gain, gain!! Best of luck to you! <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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Emily65Roses

New member
Oh man I remember when I used to just eat butter by itself... *shudders* Now the idea grosses me out. Hahaha. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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anonymous

New member
Yeah, my son gets a lot of fat & calories from butter - - the real thing too! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also realized (from doing this 3 day food log) that he consumes more with whole milk and Carnation instant breakfast than I realized. We also give him Boost Plus (14 grams fat & 14 grams protein per bottle - woo hoo!) after dinner. If it weren't for these, I'm sure we'd be looking more seriously at a feeding tube.

Carey
 
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