body image

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trghpu1994

Guest
our 15 yr old girl is obssessed with thinking she is fat. she is right about the size the doctor wants her to be. she does get a slightly puffy stomach after she eats. the orkambi hasn't helped because she hates eating food with fat in it. she doesn't care about whether it is a healthy fat. we have gone round and round over her treatments the last few weeks. any suggestions?
 

Twistofchaos

New member
Doctors do tend to want to overdo it a bit ofcourse. They want us to hit a certain BMI and we do want a nice reserve but most CF'ers severely lack musclemass and making up for the weight in fat is not so useful after a point. Indeed because of self image issues and making it harder to be active which is counter productive.

Let her try out various sports. To build muscle and because she'll be encouraged to learn about nutrition which is needed to perform well.

If she is curious about CF encourage her to research it. Maybe research stuff together and try to have very open non attacking talks of what's worrying her. What's going on with her life, CF and future. Difficult talks but it could make discussing doing treatments and keeping up health much easier.
But we do go through phases especially at that age and learning from our own mistakes is the best way to learn. Though no doubt extremely hard for a parent.
 

nmw0615

New member
I agree with Twist regarding doctors' BMI hopes. I'm 5'6", and I weigh between 126 and 128. For the best BMI, I should weigh 135. I've been at that weight, and I felt uncomfortable. Not just with how I looked, but I didn't feel like myself. I told the doctors I would do everything I could to stay around 127lbs, but that's as high as I was comfortable going.

I also agree with getting active. Not only will it help her lungs, but activity always made me hungry and I'd use healthy fats to fill that hunger.

I'd also take a look at what you eat and how that projects on her. If you're eating as low as possible meals in fats, that's a message she gets. My mom, until I started cooking my own food, would create meals that were healthy for everyone because then I didn't feel like the odd one out. I didn't have a special dinner high in fat while everyone else had a different meal. I might get an extra pudding cup with dessert, but the family meals were the same for the whole family. It's hard enough being a teen and wanting to fit in, but when there's this extra challenge of a disease, we start off by not feeling like we fit in. Any ways to make the distance between "everyone else" and you (your daughter in this case) helps.

Also, if your daughter needs to talk to someone who went through all that somewhat recently, I'm more than happy to email her and talk.
 
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trghpu1994

Guest
thanks for the suggestions. Part of the problem is the Orkambi. She hears "eat it with fat" and all she thinks of is fat. She does not distinguish between good and bad fat, no matter what we or the drs tell her. She is in athletics and is trying to build some muscle. Her stomach balloons after eating and goes back down to flat. She really does not like that, but not sure there is anything we can do about it. We are concerned she will stop eating a well rounded diet. We all try to eat about the same things at meal times. We try to not make a big deal of it. She lived the first 12 years of her life in an orphanage where they did not have proper medicine. The poor kid was bloated. The other kids picked on her for being "fat", which it wasn't. She was just not properly absorbing nutrition and was bloated. We can tell from the pics, plus as malnourished as she was when she came to our home. She has grown 6 inches in two years and has put on a healthy amount of weight. This Orkambi medicine has taken her body image issues to a new level. We have had more battles over treatments and meds since she started it. Just wish it didn't require foods with fat in it. The drs don't really get that she is biologically 15 but emotionally more like a 5-8 year old due to orphanage delays. So yeah. it's complicated.
 

jricci

Super Moderator
I’m sorry your daughter is having such a difficult time. Adolescence is such a trying time for anyone; but dealing with CF and her history of being in an orphanage takes the stress of adolescence to a whole new level.
There was a post recently about Orkambi and fat that you may find helpful:

http://forum.cysticfibrosis.com/threads/146218-Orkambi-and-fat?highlight=orkambi

I'm sure it's been difficult to watch her struggle. It sounds like she's been through a lot. I hope this rough patch is short lived and that everyone finds some relief soon.
 

imported_Momto2

New member
trghpu1994. My eldest daughter was adopted from an orphanage as well, but at a much younger age. Where was your daughter born, if you dont mind me asking?
 

Ank

New member
since she is young, orkambi can actually correct her genetic problems..she will b normal if orkambi works...
Give her orkambi with hidden fat like eggs..(2 eggs yellow have 22gm fat )
if orkambi helps then u can decrease no of meal per day.

If she she wants to loose her weight let her loose sm weight..cfers loose weigt each yr

so after a few yr weight will not b a problem..

stomach should not get puffy ..And should be investigated
 
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trghpu1994

Guest
she was born in Bulgaria. The Orkambi seems to be helping. I am not so sure how much of this is ultimately a battle for control. We get daily battles over almost anything. No matter what thr dr says about how she is doing or nutritionist or whomever she just wont believe them. she does her treatments most of the time. its the pills we have to check. it took over a year for her to ear guacamole again once she heard a dr say it had fat. fortunately her cf dr is happy with where she is at health wise. she has a quarterly appointment next week which i am sure will be fun (sarcasm)
 

LittleLab4CF

Super Moderator
Show me a young woman who isn't dialed into their body image and I'll show you an isolated incident. I'd be very careful with how to be helpful and not trigger a rebellion that could really cause some eating behavior, not particularly good ones at that. The tweens to teens for my two nieces and my great niece were concerning times. The pressure on them for body image was incredible based on their behavior. In addition to an unhealthy relationship with food and eating, one became a "cutter", not to be out done by another who cut her wrists over the natural development of her body. The only weight problems were unrealistic pressures of their peers.

In my opinion, based on just a few experiences and a fair amount of studying research on the topic, she can be educated and hopefully realize how she must manage her weight. I do believe a good BMI or Body Mass Index is essential. When looking at BMI, once you have received a measurement, if that value isn't underweight, the optimum body weight is just an optional goal.

Like many CFers I am thin (5' 10" 145# ideally). I'm going through an intense and painful pancreatic flare and in the last month alone dropped twenty pounds. This is why CFers need a healthy weight. A decline or exacerbation can strip one of 1/3 of the individual's body weight in no time. If that's 145 pounds to 90 pounds, a sudden pneumonia could be fatal.

I'd like to suggest an almost guaranteed way to reduce or eliminate bloating. This assumes that her enzymes are properly titrated evidenced by soft pliant, formed stools. Follow a low FODMAP diet. Fermentable Oligo-Di Monosacarrides and Polyols are responsible for most bloating. FODMAP foods will have a familiar ring. Foods high in fructose, gluten and lactase are major culprits but at least my FODMAP do's and do not's aren't absolutes. My belly has been like a canker on a walnut tree, resembling an army helmet hidden under my T shirt for 30 years until I got my gut healthy and took up a low FODMAP diet.

It makes sense. All high FODMAP foods are either difficult or impossible to digest. They pass into the intestines, both small and large, only to find microbes happy to ferment and irritate the tender gut. These aren't healthy fiber or foods that contain needed special nutrients, they are food for microbial interlopers and toxins like wheat and pit fruits make to avoid being eaten by insects and animals. Seeds are the only future children of plants. Many plants utilize the gut of animals to spread seeds afield, but cannot afford to lose them to digestion. Humans making flour from grains must remove toxins from some grain types. They should be removed from several others but the toxins aren't recognized.

It only took about a month and years of serious bloating were a memory. If fat is encouraged and "fat" is the wrong association, consider MCT's or Medium Chain Triglycerides. Fats are very long, long and medium chain triglycerides. The longer the chain of a lipid, the more bile acids are required to break the fat down to long and medium chain triglycerides. If her gallbladder is not up to par or missing, putrid gas will replace any fears of looking fat. Another reason to consider MCT's as fat. It will put good weight on anybody who has enough. Some MCT's are tasty, coconut, flax, hemp and many other oils go into food easily. They have a feel good quality to most tummies.

Fats are calorie concentrates and to a point calories over budget will add weight. Sugar alone can cause morbid obesity. Healthy weight requires the complete modern food pyramid, fats down through MCTs, short chains or proteins, complex and simple carbohydrates and sugars.

Let her avoid heavy fats, it's not fat, rather the word "fat". Who's counting MCTs?

Good luck,

LL
 
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trghpu1994

Guest
Thanks for the suggestions, her dr was happy with her at her quarterly. She is taking athletics and trying to build strength. She has a lot of food/texture issues so trying to change diet is complex. She seems to be understanding a bit better what she is supposed to be eating. But our concern is as she grows and gets in better shape and builds muscle her weight will naturally increase even without fats or whatever. Her bio parents are probably like many of the people on her country and very tall. we can tell she should be very tall, if she would have had proper nutrition in her early years. We are trying to educate her better on what is in foods and what she should/should not eat
 
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