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Thread: Cystic Fibrosis

  1. #1

    Default Cystic Fibrosis

    I've tried to search for mention of cystic fibrosis here, but can't find much. I'm looking for other moms with experience BFing a CF baby. Our LO was diagnosed at 3.5 weeks. He's now 5 months, and looking good! I just have trouble reconciling BF advice with CF nutrition, and I'd like to know what others have experienced.

    Just FYI, our current regime includes pancreatic enzyme replacements, and acid-blocker to protect the enzymes, vitamin supplements (Vitamax and Polyvisol), and about 4 oz. per day of formula-fortified breastmilk (1/2 tsp per oz). We just started (yesterday) pumping at every feeding to try to combine as much hindmilk as possible for that one bottle.

    The CF nutritionist has said we can start cereals "whenever we're ready", and she says that cereals have more calories by volume than other foods like veggies. It's also been recommended that when we start trying veggies, we add a little olive oil to up the calorie content.

    Because I know it's best if my LO doesn't get sick (because it can be really difficult to clear up infections), I want to BF as long as possible. I figure the extra pumping will help keep up my supply so that it's not affected by all the additional calories DS will be taking in. With the CF, I'm not sure it would be affected anyway, though, as his absorption of those calories will not be the same as a typical baby.

    There's just a lot of conflicting advice (you should have seen the look on my LLL leader's face when I told her about the bottle...). We're doing fine now, but I'd love to hear a long-term BF story to know that meeting our goals is possible!

  2. #2
    Join Date
    Jan 2006

    Default Re: Cystic Fibrosis

    hang in there.....
    The CF nutritionist has said we can start cereals "whenever we're ready", and she says that cereals have more calories by volume than other foods like veggies. It's also been recommended that when we start trying veggies, we add a little olive oil to up the calorie content.

    I'm not sure this statment is true, you might want to do a little bit of resurch on your own and see what you find out. IT might help another mom down the road...

    Are they worried about weight gain? Breastmilk has about 22 callories ber oz...

    have you thought about giving the suppliment in a cup or spoon ? so that baby can meet all his sucking needs at the breast?

  3. #3
    Join Date
    Jan 2007
    Southern California

    Default Re: Cystic Fibrosis

    Hi! I don't know much about CF, but my nephew was diagnosed with it at about a week old. My sister did bf him directly from the breast and from the bottle with pumped milk. Her son is now about 3 1/2. I can't answer any questions, but I would be more than happy to ask her anything for you. I am sure she would be happy to answer and help.

    Hi, I'm Allison

    Mama to Henry Carl 12/28/06

    7lbs, 15 oz, 20.5 in
    Breastfed for 20 months!

    Mama to Ryan Thomas 11/20/08
    8lbs, 7 oz, 21 in
    Breastfed for 30 months!
    Mama to angel 4/03, Mama to angel 12/05

    Feb TBTTW 33.1/70

  4. #4
    Join Date
    Mar 2006

    Default Re: Cystic Fibrosis

    I don't have advice about CF, but I have a baby with a cleft palate. Like CF, CP babies are often FTT. There was some concern over my guy when he was a couple weeks old, and it was suggested to us to also use fortified breastmilk. I did some research and found it really isn't as beneficial as previously thought and instead made "double-cream" bottles (he does no nutritive sucking at the breast, obviously, because he is physically unable to really get enough out to thrive via breastfeeding). I pumped extra milk, let it stand until it separated, and took off as much of the cream as I could. If you get some of the hindmilk, that's OK too. And then I added it to one bottle that he got in the evening, just for extra calories. Before I knew it, he started gaining weight.

    Good luck. Sounds like you are doing something right if he's doing well to me!
    Mama to my all-natural boys: Ian, 9-4-04, 11.5 lbs; Colton, 11-7-06, 9 lbs, in the water; Logan, 12-8-08, 9 lbs; Gavin, 1-18-11, 9 lbs; and an angel 1-15-06
    18+ months and for Gavin, born with an incomplete cleft lip and incomplete posterior cleft palate
    Sealed for time and eternity, 7-7-93
    Always babywearing, cosleeping and cloth diapering. Living with oppositional defiant disorder and ADHD. Ask me about cloth diapering and sewing your own diapers!

  5. #5

    Default Re: Cystic Fibrosis

    I know of an LLL Leader who has three children with CF. If I can get in touch with her, would it be okay if I give her your email address?

  6. #6

    Default Re: Cystic Fibrosis

    @LLLKaren: that would be great! Thanks!

    @aprilsmagic: That makes sense. I wasn't sure about the fortified milk, and it doesn't seem to have affected his growth rate much. I did skim some cream from some other expressed milk to add to my already very creamy hindmilk compilation. It seems to me that would be better than fortifying with formula anyway, since breastmilk is so digestible. I hope we'll see gains like you did!

    @henrys.mama: I'd love to hear what supplements (if any, though with CF there were probably some) she used while BFing. Thanks for doing some recon for me!

    @andrea: Yeah, I was skeptical about the cereal. Carbohydrates have 4 calories per gram across the board. It doesn't make sense to me that cereal (even mixed with breastmilk) would have more calories than, say, mashed sweet potato with olive oil. Unless there's a huge difference in mass between the two. If our efforts at collecting cream have a big enough impact, I'll probably ignore that part of her advice. Do you know what source says 22 calories per oz.? The nutritionist said BM averages 18-20 calories per oz. I'm not sure where she got that number, either.

    Thanks for your input, everyone. I'll keep you updated with anything that we find works for us. I've been pretty frustrated at the lack of information out there on BFing and CF nutrition. I want to make sure I leave a trail for other CF mamas to pick up on!

  7. #7

    Default Re: Cystic Fibrosis

    In case of future searches for CF info...

    Nutritional Support for CF

    Includes an article on the importance of breastfeeding CF babies.

  8. #8

    Default Re: Cystic Fibrosis

    Here's an update. We saw our LC last Thursday and were pleased to see an increase in DS's rate of weight gain (to 29 g per day over a previous average of 16 g per day).

    In the seven days prior, I pumped following every feeding and compiled all of that along with the cream skimmed from what I call the "replacement" pump (when my LO takes the fortified breastmilk bottle). I then added however much more milk was necessary to make 4 oz. We mixed with that 1/8 tsp non-iodized salt (because he doesn't like his salt mixed with his enzymes) and 2 tsp (read: an actual tsp. measure, not the scoop in the can) of powdered formula. We also increased his enzyme dosage overall, and even more with that calorie bomb of a bottle. (He takes 1.5 capsules of Creon 6 with regular feedings, and 2 whole capsules with the bottle.)

    All the pumping is a lot of work, but it seems to have paid off quite well. I'm convinced it's the hindmilk that's making a difference rather than the formula fortification as we didn't see the same jump when we started that. But I'm sure that the increase in enzyme dosage is playing a part as well. (DS was taking 1 capsule per feeding previously.)

    We see the LC again this Saturday, and we'll see if we're maintaining that growth rate. Take note, CF mamas: the hindmilk is where it's at! It makes perfect sense that the most absorbable calories would be from breastmilk rather than other supplements.

    And I found a nice chart of nutritional values for a lot of beginning complementary foods. Our plan of action is to start with avocados (a whopping 46 cal per ounce!), then move to sweet potatoes, brown rice cereal (homemade!), and bananas. I think DS is just about ready. He keeps eyeing my food, and he's gotten very good at taking his enzymes from a spoon without too much tongue-thrust. I'm just waiting for him to be able to sit up a bit more. He'll be 6 months in just 18 days, so it's almost time!

  9. #9
    Join Date
    Feb 2008

    Default Re: Cystic Fibrosis

    Great news! Keep us posted! It will also help others looking for this info!
    Mommy to Maxwell 10-9-07 weaned with love (a party and a remote control monster truck) on his 4th birthday
    My Boy 3-16-10
    And my sweet pea Sam 2-12-11

    Watch Your Language

  10. #10

    Default Re: Cystic Fibrosis

    An update for any mamas searching for CF and finding this thread: LO is 15 months old now, and still nursing like a champ. We had a scare about 6 weeks ago at our CF clinic appointment when he had dropped down to the 13th percentile in weight-for-length. The goal is to be at the 50th percentile in weight-for-length by 2 years because long-term lung function has been correlated to weight gain. The docs wanted us to try some new strategies and check back in a month. For about 10 of the 29 intervening days, he wasn't interested in foods because we both got sick. But we kept trying, and he had climbed to the high 40s in weight-for-length by the time our weight check came around. This is great because they were talking about more serious interventions, and I'm so glad it didn't come to that.

    The strategies that worked for us: I try to feed LO six times a day. At least once a day, we do mashed avocado with salt (gotta get 1/4 tsp. a day!), and I try to do yogurt once a day, too. The yogurt is always whole-fat greek yogurt that I mix with defrosted berries and a little honey. It packs a punch! If he doesn't eat well, I try again in 60-90 minutes. I let him move around while eating because he was not having the high chair anymore, and he'll eat more on the run as long as I keep putting food in his mouth. We got some high-calorie recipes from his nutritionist, and we also make sure he gets his Haagen-Dazs after dinner. (It's a good thing I have to chase him to feed him, or else I'd be packing on the pounds too just from eating his leftovers!) His nutritionist said juice is a freebie (no enzymes required!), but we limit it to 4 oz. a day, and we dilute it with water.

    She also said to limit his water and to offer caloric beverages with meals, like milk or soy milk or pediasure, etc. LO seems a little disconcerted by creamy drinks in his sippy cup, so a big part of our strategy has been nursing during meals so that his thirst is quenched and he's not filling his tummy with water. This is contrary to the nutritionist's initial suggestion that we cut back on daytime nursing to increase his interest in food. I didn't think day-weaning was a great plan, and nursing during meals (and still some between, although it feels like it's always meal-time around here!) has been working for us.

    We still do quite a bit of night-nursing, which is great because he wouldn't be taking in any calories if he were sleeping through the night anyway. We're co-sleeping, and I keep a little lunch bag with his enzymes and supplies next to my pillow for late-night nurse-snacks.

    I just want to make sure anyone who's searching for support for BFing a CF baby can find it and know that it can be done, and in fact should be done! It's easily the best thing you could do for your LO!

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