Parenting Resources

[LCFmomof2]

Hello, my name is Lisa Greene and I have 2 children with CF. My business parter and I collaborated with the company Love and Logic to come up with a specialized program called Parenting Children with Health Issues. Our program helps parents find the rsources and answers they are looking for when it comes to handling difficult situations with our children. We provide many free resources such as videos, articles, blogs, audio, and much more on our website which is free for anyone to view. We also just opened up a sweepstakes on our Fabebook where we are giving away a copy of our book, a short DVD, and a starbucks gift card which is also open to anyone.

I also work as a parenting coach and want to let it me know that if anyone is having an issue with their child and need some guidance, I am very open to sharing my knowledge and helping anywhere I can. Please feel free to PM me if you ever need to. I have built my career around helping other parents battle the same things that I have battled with my two children.

Lisa Greene

www.pcwhi.com

http://www.facebook.com/PCWHI?sk=app_121121694568521

[NannyElin]

Are your CFer's picky eaters? My daughter who is almost 19 months has CF but the only problem she has is that she doesnt eat well. So we have to give her pediasure to make sure she is getting enough calories. I wish that she would eat better but she doesnt so the pediasure is necessary for the time being. And I am tired of being viewed as the lazy parent who doesnt want to make her child eat. lf this is something you have experienced how have you handled it?

[LCFmomof2]

Yes, my CFers can be picky eaters but I have learned how to respond in ways that help or, at least, don't make it worse. And you can, too!

 

All children go through periods of time where they are picky- especially toddlers. But when a child has CF, it makes the stakes much higher. And the way we parents respond to these picky eating moments can turn a typical childhood stage into a lifelong battle. So getting educated about effective and ineffective parenting responses to picky eating is critical especially when a child has CF. And the earlier, the better.

 

We have written several articles about this. You'll find them under "Food Issues". Here is the link: http://www.parentingchildrenwithhealthissues.com/articles/article/4270854/149082.htm

 

About the Pediasure- that's great that your child will drink it! Some kids with CF don't like it and that makes it tough trying to get in the calories. Our kids liked it too and now that they are older (10 & 12) they drink Carnation Very High Calorie. They are both doing well- in the 50% percentile for BMI. As you know, higher BMI is tied directly to healthy lungs so this is a very important issue to get a handle on now, while your child with CF is so young.

 

As far as feeling like "the lazy parent"- we CF parents will face alot of judgement with our kids over the years. I've had comments from people about the amount of salt we give them, that they will be obese from so much hi-calorie food, that I am overprotective because I won't let them go to someone's house who smokes, etc. I have found that getting upset about ignorant, rude people doesn't do me any good. If the situation is appropriate, I explain why they need more salt or high fat but if that's not appropriate, I just ignore them for my own mental health and my children's too. My kids will learn how to handle rude people by the way they see me handle them so I want to be a good model for them in coping with frustrating situations well.

 

Some people can't be ignored. If the people giving you a hard time are from your CF clinic (unfortunately this does happen), then document in writing what you are doing to improve your toddler's eating habits- things you have tried (there's a long list of ideas in the articles I mention). Then show this to your nutritionist. Sometimes picky eating with CF can be caused by other things like a sinus infection, lung infection, malabsorption, or side effects of meds (like oral antibiotics). If you have documentation showing that you are using effective behavioral techniques to motivate your child, then it helps the medical professionals sort out what else might be going on. They can at least rule out "lazy parenting."

 

I know this reply is long but it's so important I want to make sure it's covered well for you and other parents who are reading. The good news is that you can learn simple, effective parenting responses to your picky eater that will increase the odds of getting in the calories. And at the very least, you'll know that you've done your very best to help the sutuation. That's a very relieving thought- to know you've "done it right" as a parent. You can do it!

Hugs and Hope,

Lisa G

mom of two kids with CF and author

www.ParentingChildrenWithHealthIssues.com

 

[NannyElin]

Thanks for the article.

I have tried making her eat, and i have tried offering her food, i have tried everything I can think of and all she will eat is crackers, and yogurt melts, yogurt(sometimes), cheese, and other dry things. She wont eat meats or real fruits or veggies. The article seemed like it would work but not really with a 19 month old. There is no getting this child to eat! I have frustrated all of the health professionals by trying to ask them for health. They all say its a behavioral thing and i need to make her eat. But Im afraid if i force her anymore than i already do she will never learn to like eating. She has been a poor eater from day one. I am glad to have the pediasure for now cause it does give her the calories, but i had to fight with her to drink that for a long time and im afraid that if i take that from her to try and get her to eat real food she will stop taking that. I also have certain family members breathing down my neck about this issue(taking the pediasure) Its rather frustrating. Its really hard to keep that frustration from showing during a mealtime. =/

[LCFmomof2]

Have you tried choices? They work like magic with this age group.

What % is she at? You might need to consider a GTube if she gets too low. CF parents can be afraid of them- or reluctant to go that step- but many say it's the best thing they ever did. It takes the pressure off of you and her. And I have had so many parents tell me that once the kid gets the tube, they start eating! I  think that's because the parent isn't showing frustration and giving pressure about eating anymore.

Of course a small % of CFers have a diffucult experience with the G tube- there are no guarantees with medical procedures. But talk with your team. Keep that BMI up at all costs. It's so important. You know that.

Many of the ideas on my article really do work with a 19 mo old.  Use choices, dips, nutella, syrup (including strawberry), jam, peanut butter, making food fun and being sillly. These are all things that "speak" to a child this age. Try it. Don't get frustrated. If she refuses, take a break  then try again in 15 or 20 minutes.

Eat a popsicle or ice cream cone in front  of her. If she wants one, too, tell he she is welcome to have one when she eats her healthy food (5 or 6 little bites is fine).  Give lots of encouragement when she takes a bite. "That's one! That's two! Only three to go for this YUMMY popsicle!!"  If she doesn't, stand firm, be calm, don't get frustrated. Keep offering and trying. You can do this!! (Trust me, I've been there with TWO kids with CF.) Hugs, Lisa

[NannyElin]

I read the part about choices in your article but how do i get her to make a choice when she wont touch any of it? she doesnt know the difference between broccoli and peas or chicken and ham because she wont touch any of them. Im not sure if she is 25 % or 50 % BMI but as long as she is getting the calories from the pediasure she is fine, but she cant have the pediasure forever. she will get the pediasure for at least another 4 months but im hoping by then she will be eating enough to switch to carnations like you were talking about and give that to her once or twice a day.

[LCFmomof2]

There are no easy answers to solve this. You are going to have to experiment with different ideas. There are bout 15 of them in my article titled "Tools and Tips for Picky Eaters".  http://www.tipsforcfparents.com/

There are alot of good CF recipes that are high calorie she might like. You can make milk shakes that taste similar to Pediasure but at least you can add other nutrition into it. That might be a good start to expanding her diet.

Dealing with feeding issues of this magnitude will take time, effort and training (for both you and her). You have to teach your daughter what ham is and what chicken is. Have her touch it, smell it, and touch her  tongue on it (if she won't take a taste). Call it "experiment time" and do it at a time of day that is not mealtime. Just experiment, be silly, have fun. Help her learn about food and associate it with fun and happy times instead of battles and frustration. Maybe she'll find something she likes.

If it were my child, I wouldn't give her the pediasure until she takes a tiny taste of something you are offering (using it like a reward) but that's me and some parents don't have the strength to do that. It's hard to stand firm when a child won't eat and especially with the presence of CF. But that's how we've always handled the pediasure (and still do) and it has worked well for us. 

If she has food aversion issues, here is a link to an article which will give you ideas to deal with it (scroll to the bottom link). http://www.happyheartfamilies.citymax.com/FoodIssues.html

You might consider getting professional help. If she is as stubborn as you are describing and won't eat anything except pediasure and you are unable to help her, you should be seeking behavioral therapy for eating disorders. Do it now while she is young- it will only get harder as she gets older- not easier as some parents think.

I wish you all the best with this. Lots of CF parents go through this and are able work through it with   parenting skill training, support from their CF clinic, patience, and persistence. It isn't easy but if you are determined, you can help her learn to be a better eater. Take good care, Lisa

PS: I am doing a teleclass in Feb for CF Parents which will help you learn more ideas. See http://www.winningwithcf.com/ for info.