Hello all,
I am new to the message board. I have a 8.5 month old son who was diagnosed w/ CF at 2 days old. He had a meconium ileus, surgery, ostomy, and an initial hospital stay of 49 days. He is doing well now. He weighs 22.4 lbs but fedding has been a constant source of stress for me. I feel like I am constantly counting every calorie that goes into him. He has never been a great eater and I fell as though I am always force feeding him. He doesn't care for baby food too much. He also has problems with reflux, so I hate to continue to feed him like this. I know how important the calories are but it seems like he is telling us that this is way too much. Lately he has started making himself gag. Don't know if this is a behavioral issue or what? If anyone has any suggestions please let me know!

Gee, I could've written this myself a year ago and probably did. DS is 20 months and is within the 50th Percentile for height and weight -- your son sound like he's doing well weightwise, but I'm sure like us -- you're pushing the calories.

At 6 months, our doctor told us to stop baby food. One reason -- babyfood is low in fat and low in sodium. Two things a CFer needs. Plus, in another few months we'd be switching to tablefood and then we'd have to start the learning process all over again. So we pretty much ground up everything we were having, although he LOVED Stage 2 Baby Food Mac and Cheese, as well as the meats. Also LOVED yogurt. He did/does have texture issues -- so there are still something he doesn't like -- ground meat, toast... If I know he's going to be whiney or finicky -- teething or tired, I make sure to feed him what he likes -- Mac & Cheese, yogurt, spagettios and shovel it in as fast as possible before he gets bored, tired or full.

We also used formula until he was about 1 1/2 years old. I also would sleep feed him a bottle of formula with cream before I went to bed at about 11 p.m. I switched to toddler formula and added an ounce of cream to it to increase calories. He now gets Carnation instant breakfast for lunch at day care made with whole milk. At home he gets what we call creamy milk -- a mixture of milk, cream & carnation instant breakfast. Your child is still too young, but DS also gets a little bit of peanut butter on a spoon for dessert at day care and I buy him premium ice cream for dessert, too. Recently his dietician also suggested we put a dollop of olive or canola oil in his soup or casserole.

The key is not to get stressed. Easier said than done, but keep telling yourself -- meal times are HAPPYtimes. You don't want him to associate eating with something negative.

The gagging thing -- could be a texture issue, could be that he's learning about his tongue and mouth. DS sticks his fingers down his throat once in awhile and laughs.

I have been EXACTLY where you are and its not fun. My son used to gag, vomit, and the stress was almost too much to bear. We started working with an OT and he definately has texture issues. Everyday of my life was spent calculating how much he ate, what he would try, etc- it was absolutely terrible.

About 5 months ago we finally broke down and got a feeding tube put in. Our nutritionist had been nudging us towards it for quite some time and we finally had to realize that it was beyond our control, as well as our son's. Thankfully your little one's weight is quite good for his age and this probably isn't something you'll have to deal with.

My little guy is 2 now and eating is still not his favorite thing, and probably never will be. He will not eat pasta, potatoes, fruit, ice cream-- and its SO hard not to push him.

When he was on baby food- I would make chicken or turkey & gravy and puree it in a food processor-- cook vegetables and puree it with oil. Beechnut makes a VERY high calorie/ fat/ carb baby food called Beechnut Naturals with a white/peach & green label - Banana Cream Dessert, Peach Apple Blend were some of my son's favorites. Anything I could give him that was packed with calories so I would not worry so much about volume.

You're doing great, but I know how you're feeling.

The gagging thing happens when he is about halfway through with his bottle. We stop to burp him and then when we try to give him the rest he gags like he's telling us he doesn't want any more. He can't possibly be full after 5 or 6 oz. We have to tell him "no" with a very firm voice and he will eventually take more and most of the time finish. Sometimes he will make himself throw up which is very frustrating because all that we have just put in is lost. I don't think its a texture things because its mostly when he's drinking his bottle. I have been thinking about working with OT but we are military and in the process of moving to a new state so things are kind of hectic here. Also it has been so hard to get a referral to go see any specialist. That is something I am going to try when we get to our new base. Just wondering what to do in the mean time. I am driving myself (and my husband!) crazy!

DS wasn't much of a drinker either and 4-6 ounces was about all he'd drink. So it's quite possible your son IS finished. Maybe just see if he wants some white grape juice later on, in between feedings so you don't have to deal with the enzyme issue and to get in some extra calories or ask about bumping up the calories in his formula -- either by getting a recipe for 24 calorie formula (more powder) from your dietician or adding a little bit of cream. Same volume, but more calories. Cream adds about 100 calories per ounce!!!

DS was also on zantac for awhile 'cuz of reflux. We were never really sure if it worked. I still stress about feeding - mainly when we're out of our home environment -- at someone's house or in the city for appointments. He gets so distracted in other places and refuses to eat. At Xmas he ate olives, raw tomatoes and a few cukes -- the entire day! On the drive home he ate 10 mini M&Ms. We survived. Just don't like it to become habitual.

BTW, your son seem HUGE compared to DS. And just wait -- in a few months he'll insist on feeding himself and throwing handfuls of food at you :)

I really appreciate all the helpful advice. His regular strength of fromula is 24 cal, but the last few days I have put him on 27 cal. I will ask the dietician about cream. Did your son have it at this age? What is your son's average daily cal intake? They keep telling me that he needs 1200-1500 per day. There is no way that he is getting that much and he is still gaining , thank goodness. My son also gets easily distracted as you said. I have 2 other kids and he wants to look at them all the time. I usually have to send them upstairs while I try to feed him. I am nervous because my husband and I are going to look for a new house out of state next week and my in-laws are comming to watch the kids. My son doesn't know them at all and I am just hoping that he will eat for them. I am trying to tell myself that he will be okay and we will only be gone for a few days, he will survive. Again, thanks for the help!

For some reason I can't read all of your response, but I will tell you this. Your dietician will probably be horrified at the thought of cream. We've got a very progressive doctor who basically says to feed DS whatever he wants and suggested the cream. As far as volume -- when DS was your son's age we felt really stupid 'cuz the doctors kept telling us that DS should be downing at least 8 ounces in less than 10 minutes. DS has NEVER EVER been that great of a drinker. He does much better today between meals with juice. Still iffy with milk.

I just thought of another thing we did with DS when he was on the bottle-
we did 27 cal formula, but because of his nasty reflux, we thickened his feeds with cereal.

I would use oatmeal or rice- this dramtically reduced his vomiting- which he did alot, and added calories. I remember our dietician saying thickened feeds were easier to digest with reflux but I can't remember why.

My son is 12months and I've been through the same thing. As I'm sure so many have. My son loves the gerber graduates or even Chef Boyardee meals. They come in little microwave containers. They are very tasty and most have high calories and a good amount of fat. Just watch out for salt! His CF Dr. said it's ok to feed him that as long as I don't salt the rest of his foods (which I don't). I also give 2 4oz. bottles or cups of Pediasure a day. This seems to help him maintain his weight gain. Also, he loves TV dinners. Salisbury steak or meatloaf w/mashed potatoes is his fav.
I have 2 older boys wocf and I was always so used to making sure they ate very healthy..(but what kid does!! .lol) So it's hard for me also to find something for Evan to eat that he will like. Especially during the babyfood to reg. food transition!
Good luck in the food hunt...kids can be so picky to begin with!
Natalia~mother of Evan, 1 yr old wcf

He is on 27 cal now.I have read about thickening w/ cereal but never tried it. His reflux is pretty much under control. He is on pepcid and reglan. He only throws up once in a awhile. But with the gagging I'm afraid he will make himself do it more and start a vicious cycle. Danny has never been a fast drinker either. He still takes about 30 min to finish his bottle. Seems like an eternity. My other kids drank theirs in about 15 min and I don't know what I'm doing different. Even when he was a newborn he would only take about 15 cc's. The docs in the hospital kept telling me he needed to take in 80 cc's but he would just not do it. He ended up coming home on TPN.

I used fast flowing silicone nuk nipples when DS was awake and medium flow for sleep feeding. DS also likes microwave bean soup and brocolli cheese. I add a little bit of butter to baby food veggies and cereal, too.

Try not to focus so much on calories and amounts. It was sooo easy to keep track when we bottlefed and used little jars of babyfood and I was so obsessed with amounts -- but eventually I realized DS is gaining enough weight and we don't need to write everything down. Except his drugs 'cuz I have a heck of a time keeping track of all those.

As far as the gagging, it could be that he's discovering something new. Kinda like when the babies discover they have ears --- parents panic 'cuz they think the child has an ear infection and it just turns out that they realized there are ears attached to their heads. I recall too from my baby book that around this time babies start to cough for the same reason. They realize it makes a neat sound.

sherry092, I don't know that I've ever seen that kind of baby food, but then again I've always bought gerber. Where did you find it? How is the feeding tube working for you son? How long does it have to be in? Was it scary to have to come to that decision?

Okay, this is really disgusting to me, but.....

DS has started opening the cupboard where we keep his snacks and juice. He also likes it when we open the fridge to get him his juice and then he usually insists on having and apple or some mandarin oranges, but lately..

He's taken to grabbing the margarine container. Yelling MINE and insisting on eating it. So, I give him an enzyme and a baby spoon and he sits in his high chair and eats a few spoonfuls of margarine. It TOTALLY grosses me out, but calories are calories and it doesn't seem to affect his feeding at meal times. But whatta gross "snack".

When I was little I used to eat butter too. I remember puting my finger into it and then trying to smooth it out so my mom wouldn't know! Totally grosses me out now, but like you said calories are calories!