help need advice worried about my cousin

CF is a genetic disorder that mainly affects the lungs and pancreas.

OK so my cousin from America is staying with me in the UK. she as cystic fibrosis, she has to eat roughly between 4000 maybe more calories or she could starve to death. i don't really want her eating empty calories all the time because its not good, even though in this case it doesn't matter. she also needs to gain weight and the doctors don't really know how to help her, except suggesting weight gaining pills, which she is not gonna take, cause it could interfere with her medication she takes 20 pills or  more of pancreatic enzymes and 10 of which are vitamins and calcium supplements. she was diagnosed at age 7 with this disease. anyway is their any ways she could gain weight healthy and revamp her diet? shes 5ft9 and 115-120.

anyway any advice would be appreciated.

i had, well i still have, a super rare genetic disease (Lchad)...and i was also requiring 3500+ cals a day when i was growing. the only answer in my case? tube feeding via a naso-gastric tube.

see if you can transfer to another consultant and team of docs, they really should be exhausting all avenues to help your cousin

They aren't really doing anything except giving her specail treatment of Mucus-thinners. she gets her period and everything but she looks so fragile, and she really is trying, even though its pretty exhausting to be eating mountains of food just to survive.

I've had to eat over 4500 calories to gain weight.  Are you looking for nutritious foods that are high calorie?  Here are some ideas:

• nuts.  just 1/4 c has around 170 calories
• dried fruit.  1/4 cup raisins has 130 calories
• smoothies (with whole milk, nut butter, protein powder, etc)
• milkshakes
• nut butters (peanut butter, cashew butter, almond butter)
• seeds
• large bagels, preferably whole wheat
• cream cheese
• baked goods (muffins, scones, etc)
• oatmeal made with cream, with added nuts, dried fruit, etc
• meats
• cheese (typically 110 per 1 oz)
• ice cream
• full-fat yogurt
• mayonnaise
• olive oil
• fish (esp. fatty fish, which contains the most omega 3s)
• juices (try making all beverages caloric.  i.e. juice or milk instead of water)
• dark chocolate
• sandwiches
• granola

I have to couisins with CF Empty Calories, are calories.. My couisin's are kids 6 and 8 and their DR's don't care what they eat... as long as they eat.. Anything.

Sarah the youngest eats butter right out of the tub per/dr's request

CF has no cure, and really no other diets to gain other than eat whatever you want, special diets are no better, the body just doesn't absorb.

Good Luck, My prayers are with your couisin

My nephew had CF.  He was about the same weight and height.  Don't know if you have Ensure in the UK but that or its equivalent will help you cousin to maintain her weight.  

 i suspose i can get her some high calorie supplements like ensure as well as nuts and oily fish. rather than cheap rubbish.

thanks for thee input everyone.

no offense to you.... but this is not your area to butt into and suggest whether she eats empty cals or not. if she doesnt care well thats that. i have a close friend who has CF and like that she eats ****. but like your cousin she doesnt care. she's below healthy bmi also but the fact is this is part of the disease.

it not up to whether you "like it or not" about how she eats. unfortunately CF's time is limited and if she wants to eat like that she can.

my friends nutritionist basically said she could eat whatever she wanted because many calories are just not absorbed. tis a well known fact that the highest cals are found in the not so nutritionally good foods, but her appetite is likely down too so the cals just have to be gotten in - in the easiest most enjoyable way possible

ok, its not that i am butting in so to spoke, she asked me to do this, cause she as no time with work/uni. so she asked me to get her some advice seeing i have more time on my hands, and my cousin unlike your friend does actually care about what she consumes, even though there is no need too.

Original Post by fidget84:

my friends nutritionist basically said she could eat whatever she wanted because many calories are just not absorbed. tis a well known fact that the highest cals are found in the not so nutritionally good foods, but her appetite is likely down too so the cals just have to be gotten in - in the easiest most enjoyable way possible

Yeah, it sounds like a major part of her problem is malabsorption, meaning most of those 'empty calories' are just passing through her anyway.  Besides, concern with 'empty calories' is more a pastime of people attempting to restrict calories, as the fewer calories you eat the more each one needs to count nutritionally.  At 4500 calories, I think the risk of eating insufficient nutrients would be less of a problem than the biological challenge of your cousin's ability to absorb those nutrients even if she eats them.  Even if your cousin wants to eat healthy, imo the first priority has to be getting the calories in the first place.  Once she has a solid routine of 4500+ kcal/day she can then tweak her diet to incorporate healthier foods.  But getting all your micronutrients won't mean a thing if there isn't enough fuel to keep the fire going...

When my grandmother was very ill, we tried our best to keep her at a healthy weight which I do believe made her comfortable longer.  Basically what we did was replace all milk with either whole milk or if we were cooking, half and half.  Potato soup was her favorite, and we made it with either the half and half or heavy cream.  It's really tasty, but of course we couldn't eat it (just tasting to make sure it was okay, never ever more than a teaspoon because it ended up being so fattening when we were done). 

I'd just encourage her to eat anything that looks good.  When you're sick, you really don't want to eat, so anything that even sounds good, run out and get it. 

i am glad i read this thread i did not know a person with CF would need to consume so much food, wow. my advice would be just never skimp. lots of olive oil, nuts and is high fat dairy ok?