what to feed an infant with CF

judysmith

New member
I have a new 1month old grandson who has been diagnosed with CF, we are all just learning about CF. My question would be what feeding sources do the best for an infant? He is on breast at this time only. He is taking enzymes now. I fed all my children rice cereal at this age, and also while breast feeding gave additional bottles of formula to help fill them up. My sister in law gave her children goats milk (easier to digest) But have never dealt with CF please give us some ideas that worked for you. Thank you<img src="i/expressions/face-icon-small-confused.gif" border="0">
 

anonymous

New member
Teeny tiny infants do best with formula or breast milk or a combination. Our doctor preferred that ds be on formula so we could bump up calories, plus I hadn't planned to breastfeed. There were some mom's who supplemented with formula along with breastmilk. Sometimes CFers need more calories. We were given a recipe from the dietician for 27 calorie formula -- normal formula is 20 or 22 cal. Basically less water, more powder. One of the dieticians kept pushing a predigested formula for CFers call pregestimil -- very expensive and DS HATED it. I finally tasted it after he'd scream and fight every time we'd try to feed it to him -- tasted like a combination of how road kill smells and vomit. We immediately switched to regular formula -- think we used Infamil Lipil. Sometimes if I didn't want to mess with enzymes, I'd give him babyfood pears or bananas for a snack. Calories are calories.

Another thing to consider when the child starts solids -- babyfood is very low in fat and salt -- so we'd add butter to his babyfood oatmeal. DS hated rice cereal, but liked the jarred oatmeal and fruit. At daycare he ate regular food ground up. At home we'd add salt to his veggies and meat. And after he was 6 months old we added an ounce of cream to his formula. I also found some yogurt called yo-baby that was whole milk, but when I couldn't find that, I'd add a dollop of cream. Now that DS is a toddler we add a dollop of olive oil to his entrees, lots of butter, he drinks whole milk with carnation instant breakfast. And a hamburger happy meal at least once a week.
 

anonymous

New member
Your daughter has to do what works best for her, but I strongly recommend that she breast feed as long as possible. If the weight is staying up there is no reason to stop breast feeding. Our doctors kept encourgaging me to switch to formula and I never did. They were encouraging it because they thought it would be easier (some CF babies nurse alot) and keep her eight on. Once we were able to bring her home from the hospital (she had intestinal complications at birth) she never went back and has been very healthy and her weight is great. The biggest thing when nursing is to make sure and give the enzymes as directed at each feeding (even during the night). I also used pumped breast milk when we introduced rice ceareal at 3 months. My daugher was eating applesauce with the enzymes starting at 2 weeks old.

I wish you and your family a merry christmas. Jana
 

anonymous

New member
I opted not to breastfeed -- even before DS was born. Whatever works as long as the weight stays on -- both breastfeeding and formula provide essential fats, nutrients and vitamins. Something whole milk and goats milk don't necessarily have. There's also such a stigma, temptation to start whole milk right away when the child reaches age 1, even before the age of one -- because CFers require more of certain vitamins, we kept DS on toddler formula until he was a year and a half old 'cuz he just wasn't a good eater and that's where he got most of his nutrition.

I got pressure from the nurses to breastfeed. Something I wasn't comfortable with and our doctor supported formula, preferred formula. We too had to bump up calories by adding more powder to the mix. We were also pressured by the dietician to use special formula that DS wouldn't eat -- we stood our ground and our doctor supported us by saying "give the kid what he'll eat". We suddenly became labeled by the dietician and a crabby nurse on the NICU floor as being difficult parents, but our child began to gain weight and was well enough to go home.

Liza
 

anonymous

New member
Congratulations on your grandson. I have 2 children, one with CF and one without. They were both exclusively breastfed. My son without CF was a chubby, chubby baby and breastfed(no solids) til he was about 5 months. He ate solids plus continued to breastfeed throughout his first year of life, no formula. My daughter with CF now 3 never had formula and exclusively breastfed for the first 6 months of her life, I introduced solids(cheerios, banana etc) around 61/2 months in additon to the breastfeeding. She took enzymes with every feeding. My daughter has pancreatic insufficiency and has had lots of digestive problems related to CF. However, she has always thrived on breastmilk and if your grandson is tolerating his mom's breastmilk with enzymes and gaining weight that the Cf docs are happy with there is no need to supplement. Breastfeeding provides so many antibodies against illness including respiratory and gastrointestinal illness, so important for CF babies and it has that DHA(essential fatty acids) that cf ers are deficient in. Breastfed babies nurse ALOT because the milk is so easily digested.

Rebecca(mom to sammy 7 no CF and Maggie 3 with CF)
 

anonymous

New member
I would definately encourage your daughter to breastfeed as long as possible. It just blows my mind that DRs push formula on these CFers when it is well known that BM provides wonderful immunities, is rich in fat AND is most easily digested and absorbed (which is very important for CFers since they don't absorb easily). I didn't like breastfeeding, it just didn't work for me BUT I wanted to give it to my daughter bc I did the research and knew it was best for her. I was able to pump breastmilk and fed my daughter fresh breastmilk for 5 months, then I fed her frozen breastmilk until I ran out when she was 10 months old. She was not diagnosed with CF until she was 12 months old but she grew wonderfully for the first 6 months (without enzymes). Her weight gain slowed down some once we started giving her solids (cereal, vegis, etc) and once we put her on formula at 10 months there was almost no weight gain over the next 2 months and her bowel movements were bad - which led to a rectal prolapse and then her diagnosis. Obviously everyones experience is different but our expereince was enough to convince me. Also, just so you know the AAP now says that it is best to wait until 4-6 months to give babies cereal, etc...I know this is different than what most grandparents did with their children but studies are now showing that this is best to avoid food allergies.

Best of Luck to your family!!
 

anonymous

New member
I would also strongly encourage breastfeeding. My son was diagnosed at 4 months and was fully breastfed up to that point. The doctors wanted us to give it up but I felt strongly about the benefits of it for him and ignored their advice. He did go on formula as a supplement twice but each time I slowly weaned him off the formula and back to the breast. He is 18 months and still breastfeeds 4 times a day. Anytime he was on the formula his stools were horrible and he needed 3 times as many enzymes. He was in the 10th percentile and is now eating tons of solids and doing very well. I think his immune system is better for it and the properties of breastmilk are great in terms of inflammation (the fat sources in commercial formulas are high in omega 6 fatty acids which are highly irritating and cause inflammation in the body...breast milk is high in omega 3 which promotes anti-inflamatory state). Now that he is eating solids we only use omega 3 oils in his food and offer a protein source at every meal. THis has seemed to help alot with digestive issues.

Hope this helps. I also felt the bonding of breastfeeding was so helpful in adjusting to the diagnosis. I felt it was one thing I knew I could do for him.

Jody
 

Haileysmommy

New member
I would also encourage breastfeeding. I nursed Hailey till she was 6 months. She did get one bottle of formula a day since birth. She has been a big baby since birth and is still big. There is nothing wrong with formula either though. Hailey's Dr's encouraged breastfeeding since it is easier digested. Hailey was never sick the entire 6 months she nursed. The month after she got sick and has been sick most of the time since then. So, I believe that the breast milk helped her a ton. I wish she would have nursed longer but she self weaned. We didn't start any solid foods not even rice cereal till after 6 months. She was fine with milk there was no reason to mess with it. Hailey just turned 11months yesterday and weighs 26lbs
 

anonymous

New member
i am not sure about cf babies, follow the doctor's advice. but healthy babies should not start on cereal until about 4 months of age. you gave your kids cereal at 1 month?
 

anonymous

New member
My girls were taking their enzymes at a few days old with applesauce.

Calories arent calories if they are not being absorbed!!!
 

judysmith

New member
I would like to thank everyone who gave me their experiences, It just happened that the Nutritionist called the kids the day after I submitted my question and wanted Sam started on formula in addition to BM. My son called me and I was able to give him all the advice you gave me. Thanks again
 
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