My 5 moth old was diagnosed with cf at 5 weeks old. At 2 weeks we went for a check up and I brought it to there attention when she ate she sounds very respy in the back of her throat. They told me probably reflux. So her next appt. The same thing except she isn't spitting up so no med. Then at 5 weeks being diagnosed with cf they put her on zantac.In Jan. had a cold not bad, End of Feb. had RSV hospitalized for 5 days but couldn't believe how well and clear her lungs stayed. A few weeks later the warmer weather was coming allergy season/ stuffy nose, still raspy in the throat uped her dose of zantac. Mean while been giving her breathing treatments. Didn't think much of it her cheeks were really red thought it was from breathing treatments. Last week we went to see the cf doctor like every month and he put her on allergy meds. and said she has asma and put her on steroids again. Well yesturday she woke up late so I fed her first instead of breathing treatment her face swelled up breathing heavy. called and PA said I don't think it is anything to do worry about steroids do funny things but I told her she has been on them before but still said the same. So I gave her her bottle at lunch time and the same thing called her PED. this time changed her form. to soy and giving her the bottle of new formula and was fine. They think that the raspiness in her throat was this all along.Been doing great today.
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Allergic to formula
- Thread starter Katina
- Start date
thefrogprincess
New member
I'm glad she's doing better. Until she is old enough to tell you how she feels you really need to stay on top of the doctors (it sounds like you have). A lot of them think they know whats going on but many times they turn out to be totally wrong.
CFHockeyMom
New member
CF'ers with digestive involvement shouldn't be on regular formula but rather a "pre-digested" formula regardless of milk allergy. CF'ers should not be on Soy or breast milk. Is your PED qualified to address the specific CF issues like digestion?
CFHockyMom,
I am confused by the information you provided, could you tell me more about the information you have with regard to CF infants and formula/breast milk? I am pregnant due in September and my baby has CF, all of the doctors I have spoken with recommend breast milk above anything else. I have read tons of information regarding breast milk which seem to indicate it is the best choice for a baby with CF, so now I'm really confused.
Thanks,
Jen
I am confused by the information you provided, could you tell me more about the information you have with regard to CF infants and formula/breast milk? I am pregnant due in September and my baby has CF, all of the doctors I have spoken with recommend breast milk above anything else. I have read tons of information regarding breast milk which seem to indicate it is the best choice for a baby with CF, so now I'm really confused.
Thanks,
Jen
Breast milk does not provide the calorie content that formulas do. Caloric intake is critical for CF babies. Some Dr.'s are now beginning to suggest that breast milk may provide some benefits for CF babies but the research is in it's minimal. Some Dr's are recommending supplementing with formula.
In any case, you need to make sure your baby doesn't have intestinal involvement before you (your Dr.) can make that decision. You won't know that until after the baby is born. Not all babies with intestinal involvement have bowel obstructions.
Don't take any advice unless it is from a qualified CF professional from a CF center.
Good Luck!
In any case, you need to make sure your baby doesn't have intestinal involvement before you (your Dr.) can make that decision. You won't know that until after the baby is born. Not all babies with intestinal involvement have bowel obstructions.
Don't take any advice unless it is from a qualified CF professional from a CF center.
Good Luck!
For the new mom-to-be: If your baby has digestive issues from CF, she will likely have difficulty digesting breast milk or formula. People with CF generally need to take digestive enzymes to digest what they eat. I tried giving my baby enzymes by mouth to supplement breast milk, but it was just too hard to get them down and too frustrating. Nursing, I didn't know how much she was drinking, how much enzymes to give, and how can you get a tiny infant to swallow the pellets? I gave up trying to breast feed, which was a big relief-- I had really resented feeling pressured to breast feed, and switched to a predigested formula ("pregestimil"). I had to order it from a pharmacy. (this was 13 years ago, so things may have changed.) It tasted awful, but my baby loved it. Ultimately, when my baby got older and could swallow a little applesauce, she even took enzymes with the pregestimil. The doctors realized she needed the enzymes because she was consuming twice as much formula as would be expected, meaning she wasn't fully digesting it (even in its predigested form). Not all babies have the severity of digestive issues we did, so you will have to try and see what works, and how your baby does on whatever she gets. By the way my teenage daughter is great -- strong, healthy, above average in weight, and does well with anything she eats as long as she takes her enzymes!
My ped. is one on one with my daughter's cf doc and they told her it was a good call. My daughter was just weighed and is 14.8 pounds. She has been on enfamil with iron with lipal and was allergic and only took half the enzymes they usually need and still has doubled over her birth weight in 5 months. Now on soy she will probably gain more because of no allergy. For the mom to be check with your cf doctor because I never heard that about formula but maybe it depends on how they digest. That is one thing between the cf doctor, the pediatrician, and I we keep in close contact the ped. calls her cf doc. and her cf doc. sends everything to the ped. and I check up on everything. You need to keep on top of everything.
Katina
Katina
thefrogprincess
New member
This is really a 2 sided issue since breast milk does have so many benefits (baby will have the same immunities as mom for one) but CF babies need all the calories you can stuff into them.
As far as getting baby to swallow enzyme beads, this is what my mom did: Dip the tip of the nipple in a bit of corn syrup or honey, then in the enzyme beads. The beads stick to the nipple and go down with the milk/formula. You'll have to repeat this several times during the feeding to make sure they get enough.
As far as getting baby to swallow enzyme beads, this is what my mom did: Dip the tip of the nipple in a bit of corn syrup or honey, then in the enzyme beads. The beads stick to the nipple and go down with the milk/formula. You'll have to repeat this several times during the feeding to make sure they get enough.
I personally believe that breast milk is best. That includes babies with cf. Yes, you can add more calories if you use formula, but from what I have heard a lot of cf babies really thrive on breastmilk. I have a one and three year old with cf. They both did much better on breastmilk. The problems started (weight loss, vomiting, etc) when I switched to formula. Breastmilk is easily digestible and has a lot of qualities that are good for the digestive system including DHA. Both of my children were allergic to formula and needed to be on Nutramigen. I have read that soy is not a good choice for those with cf. Also, if a person is allergic to milk, there is a high chance that they will also have problems with soy.
It took about six weeks for my son to finally start gaining well after his birth. He was diagnosed by ultrasound so he started taking enzymes immediately. I was tempted to switch after a few weeks of breastfeeding because he looked thin after a few weeks, but then the pounds started coming on. He refused to nurse after six months, so I pumped until he was a year. It is also only a few shorts months before you can add butter, etc. to baby cereal and baby foods to get those extra calories.
My children did well with applesauce and enzymes as infants.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf
It took about six weeks for my son to finally start gaining well after his birth. He was diagnosed by ultrasound so he started taking enzymes immediately. I was tempted to switch after a few weeks of breastfeeding because he looked thin after a few weeks, but then the pounds started coming on. He refused to nurse after six months, so I pumped until he was a year. It is also only a few shorts months before you can add butter, etc. to baby cereal and baby foods to get those extra calories.
My children did well with applesauce and enzymes as infants.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf
NoDayButToday
New member
As a baby, I was on a special formula (Pregestimil) at the reccomendation of doctors. I had a fairly complicated meconium ileus case. They advised using this as opposed to breast feeding.
I have an 15 week old with cf. She does wonderful taking the enzymes in applesauce. She is breast fed and gets 1 bottle of formula daily. She was 8.9 at birth and is now around 14.5. The dr said that if her weight is down then I can pump and add breastmilk fortifiers for extra calories
Leeann
Leeann
I breastfed my son for one year and it was the best thing I ever did for him. However, I did supplement with formula to give him the extra calories. I was tempted to stop nursing and only rely on formula but the immunities and bonding from breastfeeding were worth it. When we started supplementing his poops were terrible, as opposed to his breastfeeding diapers, but we changed his enzymes around and things started to smooth out, if you know what I mean!
to new mom with baby due in september. I don't know what the last poster is talking about that breast milk is not enough for a CF baby. ALL research and studies show that it is more than enough for the baby, although there are some babies who have sever digestive problems and as some other posters said; will have digestive problems regardless if you breastfeed or formula feed. If you do breast feed, you may have to supplement your baby somewhat if they aren't gaining enough BUT there is nothing that can replace the bond you get from breastfeeding, or the colustrum. If you are able to breastfeed, you should really take advantage of it. And on this one, I would trust your doctor. Are you already in touch with a CF center? It might be a good question to ask them about breastfeeding and if you do need to supplement the baby, what do you use.
Julie (wife to Mark 24 W/cf)
Julie (wife to Mark 24 W/cf)
Thanks Julie-
I hadn't decided about breast feeding but I was very disappointed after reading that it would not be a good idea. It helps to hear from the folks that had good experiences with it.
I go to a military hospital and I'm not very happy with the care I'm receiving, even before this diagnosis. I've asked my doctor several times about talking to a specialist and he doesn't respond, seems to avoid it. After receiving the results from my amnio, the perinatologist recommended I deliver the baby there (about an hour away) because if the baby were delivered here and had problems after birth he would have to be flown to another hospital an hour away for surgery. Well, he doesn't think that is neccessary either, and maybe he is right, but what if he is wrong? They observed an echogenic bowel during my L2 u/s and that kinda adds to my already worried mind. I just don't understand why he is hanging on. He kinda makes me feel like I'm insinuating he is not adequate or something, and thats not it at all.
Sorry for the rambling.
Jen
I hadn't decided about breast feeding but I was very disappointed after reading that it would not be a good idea. It helps to hear from the folks that had good experiences with it.
I go to a military hospital and I'm not very happy with the care I'm receiving, even before this diagnosis. I've asked my doctor several times about talking to a specialist and he doesn't respond, seems to avoid it. After receiving the results from my amnio, the perinatologist recommended I deliver the baby there (about an hour away) because if the baby were delivered here and had problems after birth he would have to be flown to another hospital an hour away for surgery. Well, he doesn't think that is neccessary either, and maybe he is right, but what if he is wrong? They observed an echogenic bowel during my L2 u/s and that kinda adds to my already worried mind. I just don't understand why he is hanging on. He kinda makes me feel like I'm insinuating he is not adequate or something, and thats not it at all.
Sorry for the rambling.
Jen
HollyCatheryn
New member
Be careful about the use of formulas and do your research on any kind you choose. there are some contraindications to the use of soy-based formulas as they can (but do not always) produce a hormone imbalance and a nutrtional deficit. Regarding breastfeeding a baby with CF. This is actually the BEST option. It is suggested by research that the most positive outcomes for children with CF, PKU, Down Syndrome and other disorders that affect the digestion that breastfeeding with enzymes (<A href="http://www.eatright.org/Public/NutritionInformation/92_8236.cfm">http://www.eatright.org/Public/NutritionInformation/92_8236.cfm</A>) produces superior outcomes.Reaons for this include:1) the ease of digesting breastmilk as compared with other forms of feeding2) the nutritional completeness of breastmilk versus formulas of any kind3) the ability of breastmilk to retard the growth of bacteria4) the ability of breastmilk to colonize the gut with good bacterias and promote the balance of gut flora - which is very important to healthy digestion and in a situation requiring the use of antibiotics5) the ability of breastmilk to transmit appropriate antibodies to any germs to which the baby and mother are exposed - which helps to reduce the number of infections a young baby incurs as well as their severity and length of duration6) the balance of fats, proteins and enzymes in breastmilk7) the stimulation that frequent skin to skin contact provides - which has been shown to be a large factor in the ability to heal and prevent illness8) the pain-dulling affect that breastfeeding provides to an infant in discomfort9) the rule of supply and demand - if your baby with CF needs more milk, then they will suck longer and more frequently and stimulate the production of more milk10) the freedom of breastmilk from contamination - important for reducing your baby's exposure to infection causing germs11) the low probability of a baby developing an allergy to breastmilk - some babies are allergic to a food that the mother eats, but this is easily remedied by eliminating the offending food from her diet rather than weaning12) the enormous cost-savings inherent in breastfeeding that can support the need to feed more often and on demand whatever amount your baby needs - make no mistake that the purchase of formulas for a baby who eats a larger than average amount can really dent your wallet and in some cases affect your ability to purchase medicines or treatmentVery few women are incapable of nourishing their baby at the breast, even women with CF or who have undergone breast sugery are quite capable of breastfeeding a baby with CF. Very few women who are capable of breastfeeding need to supplement. If you find that circumstances surrounding the birth or your baby's immediate needs require supplementing or the use of formula, do know that there are many options other than bottle feeding. You can cup or syringe feed. There are finger feeders for babies with poor sucking reflexes. There are supplemental nursing systems that allow you to supplement with formula at the breast (Lact-Aid and Medela SNS). The Lact-Aid and SNS are also helpful if you decide to formula feed and then change your mind. It is possible to induce lactation (whether you have weaned, never breastfed, or never been pregnant) through the stimulation of putting a baby to the breast. Though it is preferable to allow the baby to benefit from your milk from the beginning of life outside.All of these aspects are well documented and doubly important to a baby with CF. It is a misconception to believe that CF is a contraindication for breastfeeding. It is also a possible misconception to believe that a baby with CF ill not need any enzyme supplementation while being nourished solely through breastmilk.I encourage you to do some research and to contact La Leche League (LLL - <A href="http://www.llli.org">www.llli.org</A>). LLL has Professional Liason Leaders and a Health Advisory Panel made up of health care professionals that can help you determine if you may need to supplement or feed your milk with some other method than just latching on to the breast. There are many resources out there to support you in the breastfeeding of any baby with special needs. There are Lactation Consultants at almost every hospital, but by far the best and most accessible (and free) resource is La Leche League.I know of some mothers who have successfully breastfed babies with CF with wonderful outcomes and would be happy to share their email addresses with you if you are interested in talking to someone who knows about this firsthand. I am a mom with CF and even I was able to successfully nourish my daughter solely at the breast until she was ready for other nourishment (which for her was around 13 months). I had a great experience and am happy to share it.I'm sorry this got so very long.
HollyCatheryn
New member
PS - colostrum, the first milk that is available in your breast upon giving birth is EXCELLENT at helping the baby pass meconium. So, even if a baby has meconium ileus, breastfeeding should pose no threat. Most babies with meconium ileus will not have trouble breastfeeding, but will not desire a large amount of milk because of their inability to pass it through their system. In any case the antibacterial and probiotic properties are beneficial to a baby with a blockage.
I did not find out that my son had CF until he was 18 months. I felt very strongly about breastfeeding and it's benefits and was determined to make it work. But my son was not gaining weight and by the time he was six months he only weighed 9 pounds, his pediatrician told me to either supplement or discontinue nursing and rely on only formula. I was very upset and decided to speak with a lactation consultant, one of the best things I ever did for my son! She said I probably wasn't producing enough milk and gave me one of the Medela SNS devices. You fill this upside down "bottle' with formula and wear it around your neck. there are little tubes that come out and are taped to the breast and then al;igned with the nipple. The baby nurses and at the same time sucks through the tube and gets extra nutrition, it's great! Once he was diagnosed, we looked back and realized that he wasn't gaining weight because of the CF and not because of my failure to produce enough milk. I completly agree with HollyCathryn and I am baffled why any doctor would suggest breastfeeding a CF infant is not beneficial. I nursed my son for a year and I know it helped his immune system and general health.
Previous Annoymous Poster-
Could you tell me where you got the Medela device? Do hospital's normally give this out?
I was looking for a pump and I noticed they are VERY expensive these days. I read the Medela is one of the best but they are around $200. Do you know if insurance pays for them. Just curious.
Jen
Could you tell me where you got the Medela device? Do hospital's normally give this out?
I was looking for a pump and I noticed they are VERY expensive these days. I read the Medela is one of the best but they are around $200. Do you know if insurance pays for them. Just curious.
Jen