need ideas for help gaining weight for my lil one.

[lrs2015]

I have a 1 yr old with cf. She always seems to be two pounds lower than they would like her to be. Shes just so small. Cutest darn thing though so funny even at a year. I seem to have tried a lot. Tried avacados, nope she don't like them. Sour cream, strawberry syrup, maple syrup, ciannamon , sugar, ice cream bars. How do I get her to take food even when she refuses. Some days she eats like a pig 700-950 calories a day. Sometimes only 600-750. Dietiation tells me she needs to be eating around 900. We've condensed her formula, now were tryingvto switch her between whole milk and pedisure drinks. So much difficulty trying to get her to drink her pedisure. Tried bottle tried sippy cup. Any tricks and tips would be helpful.

 

[Gammaw]

Irs2015, we understand. We were there too. DS was born at 5 lbs 6 oz. And in NICU for months. Gaining weight the first year was hit and miss. We worked with the nutritionist but it wasn't enough.

We finally hit on Ovaltine. He didn't like supplements but loves chocolate milk. We didn't want him drinking something without any nutritional value so we tried Ovaltine and it was a hit. Some use Carnation Instant Breakfast and similar potions, but chocolate flavored Ovaltine (not Malt flavored) was a hit. We put it in a sippy cup and never let it stay empty for more than a few minutes. We used 4tbs instead of 2 but see if that's too strong a chocolate flavor for her. DS wound up drinking 4-6 sippy cups a day and at 240 calories a sippy cup it's exactly what he needed. When we switched centers at 2 years old, the docs and nutritionists were shocked at how great his perect chubby weight. He was chubby, pink, and healthy and happy.

Now I will add two other techniques we used. First of all when you have this kind of problem, don't be so picky about what food you use to up her weight. Whatever she likes, give her a bunch.

The next thing we did that really contributed to our success, was to feed continually. Even with sitters and later daycare, the instructions were to feed, wait 15 minutes to 30, offer him a sippy cup, wait 15 to 30 minutes, offer him a snack, wait 30 minutes, feed lunch. Wait 15 minutes offer a sippy cup, etc.

Remember - never, ever force, never ever never ever. I don't care what it is or at what age, if you force, you build resistance not compliance.

Finally, our last strategy was to not accept his indications that he was full at a meal without one more go. Most people stop eating when they've had enough especially of what's being fed. If it's his favorite food, he will fill up and quit. Just take the bowl away without any attempt to get her to take another bite and smile. But then I would head to the cabinet for a DIFFERENT food. Pull something out.....chips, dip, applesauce, juice, pudding, crackers, ice cream, something that had not been served. I might take a bite myself, for me, not him. When he sees me eating something he likes, ask if he would like some. Usually the answer was yes. It was something different from the meal, so he wasn't full of THAT. If he said no, I honored that without any additional prodding or remarks.

DS has maintained over 50% - typically 75% - BMI since then, despite being born at less than 10% and staying very low the first year.

Let me know how she's doing and feel free to ask any questions.

Blessings!

 

[Ratatosk]

At that age ds still ate some baby food. Turkey, Mac and cheese, oatmeal with pears, which I doctored with a little salt and butter. Also liked certain yogurts --- yobaby, trip, yogurt. And I'd just shovel it in. I'd also buy convenience items --- chicken ala King, chicken and dumplings, single serving soups. At daycare they just ground up regular food very finely as he had issues with some textures. Didn't like ground meat or toast. Oddly enough he'd eat ham patties, hamburger without a bun... He was on extra calorie formula until almost age 2 which I added cram and chocolate powder. We also fed him vanilla carnation instant breakfast. Powder mixed with whole milk and an ounce of cream. Nowadays I buy chocolate crib at Costco. He didn't like premixed drinks like pediasure or boost. Too thick.

i just tried different things and stuck with what he liked. I once took a case of spagettios on a trip to Mexico for a wedding.

 

[kenna2]

I can't remember the exact name of the product, but it comes in a can that you can find in any regular store that's powdered egg whites. I mixed that in with my food, jello, whatever to get my weight back up after I had stomach surgery. You can't tell they are in there but there's a lot of protein in it

 

[Aboveallislove]

We too struggled with DS not being as big as they wanted. He started out around 10% and every time we went in the pushed for him to weigh more and have more calories, even though he was slowly moving up to 20-30ish. I ended up trying to force him to eat when he wasn't hungry and it backfired and he stopped eating, lost weight and they started discussing feeding tubes. We had a swallow test attempted to see why he wasn't eating and the OT suggested Ellyn Satter's books (Child of Mine) and I realize the issue was me and pressure. I backed off and he started eating. They still pressured which pressured me and so I just started dressing him heavier for his appointments. Seriously, it was ridiculous: The dietitian was thrilled he had gained so much between one set of appointments and I said "well, this was his first appointment with clothing on" (they did naked weight until 1 and then with clothing) and she just kept talking. I'd strongly recommend you read her book as I think it really resonates with the problem of pressuring to eating and how that can backfire and also that children have different "natural" weights, notwithstanding the CF team wanting then all to be at 50% bmi. It also stresses how they will eat a ton at some meals and like birds at others.

The Satter approach, though, also has eating only with planned meals and snacks and not cooking only their favorites, and having family meals, but with lots of high fat options amonst the mix and having some of their favorites. Frankly, I had a hard time getting many meals/snacks in the day because of his horrible acid reflux and needing to have a couple hours between food and his vests and he wasn't ever hungry if he ate closer than a few hours apart. Part of the eating issues, though, I think came from lots of stomach issues: He never really liked food and now that his gi stuff is in order he seems to enjoy food.

I try to follow the Satter approach, but because I still freaked about his low weight I did always have lots of high fat favorites at the meals and put a ton of butter on extras and also DS had Boost kids essential plus which was 360 calories each, so he had a ton of calories just from that. He is now in 90% of BMI (was over 100% and they actually wanted to cut his calories and have him loose weight!). But even as he was going up the growth curve, he was still not at the calories they said he needed to gain the weight they wanted!

Anyway, that's another approach that might work along with the two that seemed to works so well for Gammaw and Ratatosk.

 

[Gammaw]

Great thread, with so many different approaches. Wow, AboveAll, 90% BMI! Obviously Satter's approach was a big help for you. We've been hovering close to 85% the last two visits and his pediatrician smiled really big - said he would tell us to cut back with most kids, but for him, they simply call it "insurance." We also always wait at 30 minutes after meals before we vest. I have found that some people haven't been told about the possibility of aggravating acid reflux if you vest too close to eating. But that was the advice from our clinic too. I would also imagine that the number of calories you need to consume in order to gain depends a lot on how effective your enzymes are for you, and the amount of pancreatic function you have remaining. It seems some really don't have the ability to put on the weight despite the caloric intake with appropriate enzyme dosages. But all of these approaches seem like great ways to maximize your chances of putting weight on "naturally." Let us know how it all works for you, Irs.

 

[ethan508]

I don't enjoy vesting right after a meal (especially a big meal). It is better for me to do it before eating or as far after the meal as feasible. I could see how a kid at dinner might hold back on getting full if he knows the vest is just going to aggravate his stomach right after he's done with his meal.

 

[Jennyvb17]

Maybe ask your dietician about scandishake. It's similar to carnation instant breakfast but twice as many calories.

maybe check out http://www.reddit.com/r/gainit
there is an faq on the right side with recipes. Not sure how many are kid friendly, but gives you some ideas.

 

[Ank]

hello
Weight gain can be done by eating food in coconut oil,as it does not require enzyme to digest conut oil

Apart fr that it is recommended to have five meals

and correct creon dose b/w meal

child shoud go to potey 3 times max if creon dose is correct..

there is a supplement of medium chain triglyceride[mct]
It does not have tase..and u cn give it to ur child .with water mct is fat..a fat that does not require in enzyme..it will help u.

With best wishess
Ank..

 

[Gammaw]

Yes, MCT oil Ank. It was prescribe in big brown glass bottles for DS when he was little. It went in every bottle of milk. But they don't seem to prescribe it anymore. My nutritionist said it's not but I do wonder whether it wouldn't be helpful.

 

[Ank]

It will provide extra calories ..Make coconut or MCT a part of daily diet..If you want him to gain weight eaisly ,give him cononut as ,coconut has mct..

Apart from.that it will also help.in mainting weight as cfers lose weight frequently.


I am also under weight..ti gain weight its quiet tough..jst extra pound will not help ur child .


Cfers need high protein diet..get a whey isolate(protein
)

cfers also loose iron..

u also need to give other supplement.


Remeber give him more protein ..it will help him grow.



Regards
Ank

 

[LittleLab4CF]

Thanks to everyone for the great weight gaining information. I've not kept up with weight gaining products and the science of fast, healthy bulking. In some of my recent posts, I am desperately trying to help a neighbor/friend turn her diminishing weight around. Like kenna2, she had stomach surgery and dropped a third of her slender body weight shortly after.

The real battle has begun. Although she is not dealing with anorexia as in the image induced eating disorder, eating is becoming harder. Because she has virtually no body fat, she is in constant pain at a level that is hard to control.

For a year and a half I've been trying most of the ideas suggested under this topic. I have been looking for a product that will encourage some body fat. Scandishake may contain the extra calories to turn the tide.

It seems like most weight gain diets are trying to follow a ketogenic method which is for lean muscular bulking. MCT or Medium Chain Triglycerides oil is central to a ketogenic diet. From what I understand, the difference between taking MCT oil in a lean gaining diet and possibly putting both meat and fat on has to do with carbohydrates added or cut back in the overall balance of carbs, proteins and fats or fats and MCT's.

Weight loss or failure to gain can be beyond frightening. This, sadly, is one way we can die and that has me terrified at the moment. In the case of my friend, all that she has to do is eat more. That is proving to be problematic for her but my experience has been less than impressive in optimizing my digestive process.

Just like my friend who should gain with calories, any healthy GI tract will deliver the calories if baby takes them in. If it took every CFer as long as it took me to balance my food intake with enzymes, the median lifespan of CFers would be getting shorter. Although having a 1 yr old is mostly about eat, poop, sleep and the occasional amazing or odd thing, CF is even more about the eat and especially the poop part of GI medicine.

The development of the GI system is a work in progress for the first year of life so this is where grandma and great grandma might be an excellent source of what is normal and what is not. I don't know where your daughter is with her pancreatic function, but your pediatrician should be checking out and know what her digestive enzymes are up to. Often this is a fecal elastase test and possibly a fecal volume/steatorrhea test to determine how well fats are digested and the fecal volume indicates the quality of digestion and absorption.

This is not something you will learn and never need again. Adult CFers and parents of CF kids become finely tuned to notice problems that might indicate an imbalance in food, water and electrolytes, enzymes and the timing for taking them. So many CFers suffer from poorly adjusted quantities of foods and enzymes that their GI tracts are a significant amount of their total battle with the disease.

Don't be shy about probing questions about the experience of her doctor with GI issues regarding CF and enzymes. Maldigestion means malabsorption too. Although MCT oil is easily digested and absorbed, enzymes must break triglycerides down to fatty acids to be used by the body. In fact all oils, fats and proteins are reduced to fatty acids of varying lengths. Once absorbed, the liver recombines the fatty acids into just four chemicals that fuel our cellular furnaces. Sugars and of course carbohydrates that are made of sugars are directly used by brain and other nerve cells. Even carbs rely on enzymes that convert them to sugar.

Certain sugars have to be further modified. Fructose, found in certain fruits like apples and pit seed fruits like dates and peaches, all favorites of mine, is one of the big offenders. We benefit from moderate quantities of fructose laced foods. Satisfying a sweet tooth with fructose that has been added because it's cheap should remember the tobacco companies. Artificial sweeteners are super sugars that we either cannot digest or we gain very little from consuming it. Unfortunately there's a host of bacteria that digest sorbitol to xylitol.

Talk with your doctor about stool quality and what various issues mean. Low weight gain is a possible symptom of maldigestion and poop volume and killing power of the smell are basic indicators. There's a lifetime of managing her GI health ahead, the sooner you are on top of the poop on poop, the easier it will be.

Good feeding,

LL

 

[Adiboo33]

Great input Ethan , I never thought about that!

 

[Helenlight]

Gammaw and LittleLab, you are such excellent sources of information! Thank you from all of us.

LittleLab you bring up an interesting point regarding sugar types and sweeteners. It has been shown that artificial sweeteners change the bacteria balance of the gut dramatically. I think that in all discussions about digestion, we must always include our gut bacteria- our 'microbiome'. In CF, with all the regular antibiotics, we are killing off many (most?) of our good bacteria, many of which are helping us assimilate vital nutrients from our food. We are still learning more about good bacteria, but we know enough that we should be replacing as many of these goodies as we can following a round of antibiotics. We should be looking after the ones we've got the best we can, by having balanced sugar intake (too much will cause yeast overgrowth, pushing out our friendly bacteria), and little to no artificial sweeteners (or artificial anything ideally).

In terms of feeding a 1 year old WCF- I agree that it's important not to pressure too much. Toddlers are notorious for shovelling food in one minute, and refusing an entire meal the next. Any excessive pressure or discomfort could put them off mealtimes altogether. I have found that displaying the food in an interesting way- turning it into a face or pattern, or putting it into little pottles, made it more attractive to my little one. Letting her feed herself, experience the textures etc was helpful in getting her interested. Smoothies and homemade ice blocks (popsicles in the US?) loaded with fat can be great. We use lots of coconut milk, cream and oil. I would always try and boost calories with fats and proteins before sugar. Nut butters are an excellent source of fat (and salt in some cases). Avocado can be put in smoothies if she refuses it on it's own. Chicken fat from the roasting pan can be added to mashed vegetables. Home baking can be a great way for kids with CF to get the get the calories they need, and you can control what goes into it.

Good luck, keep us updated!

 

[stylecomfy]

Just bumping up this thread - there is currently a 'recipe contest' on the cysticfibrosis.com/blog page (May 2017). We'll be giving away some gift vouchers for submissions of CF appropriate recipes in a whole range of categories to choose from. PS it doesn't need to be full blown fancy recipes, if you have a simple dish or snack incorporating ingredients suggested in this thread, send a photo and instructions on how to assemble it via the address on the blog. Full details on how to enter is in the blog here http://cysticfibrosis.com/recipe-contest-win-a-50-gift-card/

 

[DianeWagner]

Sorry to hear about your daughter. She is suffering a lot in this small age. For her weight gain, you should try the milk mixed with almond powder. It is a rich source of protein and can help her to gain weight.