Allergic to formula

[Katina]

Could anyone tell me why soy formula isn't good. I called the cf doc. and he didn't say anything bad. Is it because of kids with a digestive problem? If she is allergic to milk base and could be lactose intolerant what would they perscribe? I think she is doing well. Since she has been off it a week she isn't congested,rattly when eating, and no weezing hasn't had to have albuterol in 4 days. She is being like a almost 6 month old should be. People that has seen her recently cann't believe the change in her and say her face isn't as puffy as it was? Thanks.
Katina

 

[HollyCatheryn]

Medela and Soy:La Leche League offers the Lact-Aid Nursing Trainer and Medela Supplemental Nursing Systems in their catalogue (<A href="http://www.lalecheleague.org">www.lalecheleague.org</A>) for  less that $50(US) each. The SNS is not the same as a pump. The pump is to feed your milk from some other means (like cup, finger, bottle) but the SNS is to feed formula at the breast. This is a great option because you are still recieving the necessary stiumlation to continue to produce milk or increase your milk. You also do not have to pump in order for you baby to receive your milk. They get it at the breast. The third thing is that it allows you baby to get extra nutrients if needed, but still get every drop of your milk available and benefit from all the amazing properties of human milk. So, the pump and SNS serve very different purposes and you may not need either one since you know ahead of time that your baby has CF (you can start enzyme supplementation right away and your baby can get all the benefits of your milk).Soy is not hypo-allergenic but is high on the list of common food offenders. It can be a wonderful alternative to cow's milk in some situations and with moderate use. It is possible to supplement the necessary enzyme in order to digest lactose if this option is better. In an earlier post I mentioned that soy can affect hormones. Soy has an estrogen-like effect on the body when ingested in more than minute quantities and it is possible to overdo a child's exposure to soy and thereby upset their natural balance. Soy has been used to ease the symptoms of menopause for this very reason. So, just use with caution and be aware. Many people are under the misconception that Asian peoples consume large quantities of soy, but research has shown that they actually consume less soy than many American vegetarians on average. There was an issue (#124 May/June 2004) of Mothering magazine (<A href="http://www.mothering.com">www.mothering.com</A>) that addressed the over-use/abuse of soy in American diets and what healthy intake levels are for non-sensitive, sensitive and allergic people, not too long ago. I'll try to look up the links. Keep in mind that it is not that a specific food may inherently be bad as much as the over-use and imbalance of a food in any person's given diet with regard to their specific needs. I just wanted to be sure to point out that soy is not a cure-all. It can, but does not always adversely affect bone growth (a concern for people with CF because of malabsorption) and reproductive health. Research over the last 70 years has shown that soy can affect thyroid function, weight gain and cognitive function (certain fats are needed for brain growth and function that are not present in soy). It is worth researching.The article in Mothering magazine says this about soy formulas:"Most fears concerning soy formulas have focussed on estrogens. There are other problems as well, notably much higher levels of lauminum, flouride and manganese than are found in either breastmilk or dairy formulas. All three metals have the potential to adversely affect brain development. Although trace amounts of manganese are vital to the development of the brain, toxic levels accrued from ingestion of soy formula during infancy have been found in children suffering from attention deficit disorders, dyslexia and other learning problems.Soy apologists sometimes argue that the plant hormones in soy formula could not possibly be harmful because Japanese women eat a lot of soy products and so must have high levels of phytoestrogens in their breastmilk. Researchers, however, have measured the soy isoflavones in breastmilk and found them low even in vegetarian women who consume copious quantities of tofu, soy milk, soy-protein shakes and other soy foods."The article is quite long and in depth and there are end notes to reference research and publications from which the information sited was gleaned (<A href="http://www.mothering.com/10-0-0/html/10-6-0/soy-notes.shtml">www.mothering.com/10-0-0/html/10-6-0/soy-notes.shtml</A>). Hope this helps.

 

[anonymous]

I got my SNS from my lactation consultant. The hospital in which i had my son had a program to offer breastfeeding support for as long as you needed it, so I did not have to pay her or for the device. She was amazing!!! contact the hospital you had your baby in and ask if they offer continued breastfeeding support (most are little or no cost for you) As far as the breastpump is concerned--I loved mine! It was a Medela pump and I rented it rather than buying it. It was very fast and easy and I would pump while my son was sleeping, playing, etc... Then i would put the milk in my SNS so he got a "double shot" of my milk! The Avent handheld pump worked very good as well, it was silent but it was more time consuming and hands-on.
I used regular Enfamil when I did heve to supplement--he tolerated it okay but his poop would be extra stinky and he would spit-up if he drank too much.

 

[anonymous]

I can't say enough about breastfeeding a CF baby. I would like to share our story to hopefully show that no matter what challenges lay ahead, the breastfeeding relationship can be preserved and it does provide the perfect nutrition and immune benefits. CF clinics and doctors vary greatly on their knowledge and support of breastfeeding and CF. I did not receive much help from them I had to trust my mothering instincts and experiement with what worked best for my son. I would also like to say that we must be a little careful with what is considered adequate growth for CF babies. From all my research and my many discussions with our peditrician, what is most important is not where our baby falls on the chart, but that they have a consistent growth curve, developemental milestones are met, and they a healthy and happy. My son was off the charts for many months prior to learning he had CF and even with almost all formula NG feeds, he stays right around the 5%. He is proportionate and has plenty of chub for his stature. This is what I have learned to go by and it has served us well.


My son was born weighing 6.8 ounces and was not growing well. His stools never turned from green to yellow/tan, he was gassy, and they were very frequent and volumeous. We knew something wasn't quite right and with the help of my midwife and LlLeche we made sure there was no supply or food allergy issues with my breast milk. We tried everything to figure out why he wasn't taking off as he should. I eliminated dairy and other high allergy foods from my diet and we'd see occasional progress and then nothing. Finally, he started showing tiny bruises on his back and legs. I immediately took him in to our ped. and we were sent to the hospital. He ended up having severe vitamin K deficiency. We tried several sweat tests and a miriad of other test but nothing could be determined at this time. All the while he would gain very minimally (up to 8 lbs by 2 months) but thankfully my peditrician encouraged me to continue breastfeeding.

Then his protein/albumin levels continued to plummet, he developed a horrible rash (later determined zinc deficiency), he developed reflux, and he began swelling. I was so scared and at my wits end with all the tests that showed nothing. Finally, we were sent to a CF clinic for a review of our case. Immediately they told me to wean him and start elemental formula with enzyme support. We gave him enzymes on applesauce or pears on a spoon before each feeding (some use a peridontal syringe for smaller babies). We needed him to turn around quickly so we went to the hospital where he received albumin tranfusions and NG tube feedings. They really wanted him to be taking the bottle by the time we left but he wanted nothing to do with it and I felt once his case turned around breastmillk should provide him everything he needed with the enzymes now on board. We finally got confirmation of CF in the hospital via positive sweat test. I was determined to keep breastfeeding him but was very surprised when our CF docs/nutritionist were unsupportive.

I am happy to say that once we went home, Ben gained 5 pound in 2 months. He always breastfed at every NG feed (2 ounces Alimentum, rest breastmilk). It took alot of patience to figure out how much he could handle because my milk supply would change as we got back to our normal pattern. Once he had a burst of weight gain to catch up and get him on the charts (or close), I watched for it to slow down to a more normal pattern (4-6oz week is good). Then I weaned him off the formula all together using a SNS system (medela $40 a hospital pharmacy) until my supply was back to normal. I watched him carefully and took him for weekly weight checks with my peditrician. He gain just as well, even better at times on just breastmilk. My son was considered a very severe malabsorption case but he bounced back quickly once he had enzymes on board. SO I believe whole heartedly had he had enyzme support at the beginning of his life he would have grown on a normal curve right from the beginning.

From an immune standpoint I can't say enough. I have a 5 year old who brough many flus and viruses our way and I totally beleive breastfeeding him allowed him to skip most of them or go through a very mild version of the cold. He did get RSV in Feb but handled the respiratory aspect very well (no wheezing or breathing problems) He did vomit alot and due to all the coughing and esophegeal irritation he stopped eating orally and lost 3 lbs. We supplemented him through the RSV (wouldn't take anything orally) via a NG again. I continued to pump my breastmilk about 4x a day while he was on his eating strike until he came back to the breast as the cough and vomiting subsided. Again we kept him on a combination of NG and brestfeeding until he gained his weight back. This time he wouldn't let me use the NG (at 10 months he just is too active and pulled it off continually), so I took a leap of faith in regards to the supply and demand rule of breastfeeding and just took him off the NG. Even though he was getting approximately 1/2 his calories from 24 calorie Alimentum my supply caught up after about 2 weeks. He gain very minimumly during the transition but it all worked out once again. He is now eating tons of table food which we add protein and MCT oil to as often as we can and still breastfeeding full-time. I also would like to note that we also saw that even though your CAN increase formula to high calorie doses he never did well. In fact he lost weight and had horrible stools any time we went higher then 20 calories (the same calories found in ounce of breastmilk). He requires 3x more enzymes to digest elemental formula than he does with the same amount of breastmilk. He stools about 1/3 the amount as well. He is now 17 + lbs at almost 11 months and doing awesome.

So as you look at your options, remember your baby and you can and will develop a very close working relationship in the early months. You will learn so much about yourself. Trusting my instincts and knowing I am his caretaker and know him best has always proven to be my best resource. We all have it as mothers and it will serve you as the mother of this special little baby. Here are two articles I found helpful in my search to breastfeed my CF son: www.lalecheleague.org/llleaderweb/LV/LVOctNov02p99.html and <a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/uvicf/docs/breastfeedcf.htm">http://members.tripod.com/uvicf/docs/breastfeedcf.htm</a>

Please feel free to email me anytime for questions and support. You can do this!

Jody <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

That's awesome that you stuck with it despite the negativity from your clinic! I think breastfeeding is so much harder for the medical field to "monitor" that is discouraged in certain situations, like CF. My son's nutritionist thought I was crazy when I couldn't tell her how many ounces my son drank at each feeding, all I could tell her was that he nursed for about 20-30 minutes.

 

[anonymous]

If the baby is born with digestion problems, they will probably be put on a formula called, if I remember right pregestameal (I might be spelling it wrong). Thats what my daughter was put on, thats been 18 yrs.ago.
dd

 

[anonymous]

If the baby is born with digestion problems, they will probably be put on a formula called, if I remember right pregestameal (I might be spelling it wrong). Thats what my daughter was put on, thats been 18 yrs.ago.
dd

 

[anonymous]

I breast fed my son for 8 months and he did terrific on the breast milk. I pumped with a Medula pump and fed him via bottle so, I knew how much he was getting at each meal. He was on enzymes from the time of diagnosis, 1 month. I used the Advent bottle system and used the cap from each bottle to put the enzymes in mixed with a little rice ceral and bst milk. Then I spoon fed him the enzymes followed by the bottle. He was born with meconium ileus complicated with a volvus( twisting of the bowel) and meconium peritonitits (inflamation of the lining of the cavity where the bowel, bladder, kidneys ect). He had an ileostomy until 6 weeks old and then was reversed. I pumped and pumped while he was in the hospital. If I weren't for the encouragement of the nurses there I would have stopped. When he was finally released at 2 months old he refused to latch on and that was okay because I had my pump. And boy did I pump!!! When we were released he weighed 10lbs. My severly pancreatic deficent little boy ate and ate and boy was a healthy happy, chuncky boy. At 1year he weighed 25 lbs!! Now that we are on table food we do have alot of difficulty gaining weight. AT 2 and a half we weigh 27 lbs. When you look at his growth chart you can see the decline in his growth once we stopped the breast milk. I Strongly encourage you all to stick with breast feeding. It is already broken down so their little bellies do have to work so hard. And the immunities speak for them selves.
~~Kim~~
Mom to Ryan 2yrs w CF

 

[anonymous]

Kim, that's awesome. I never would have thought to put enzymes in the Avent bottle cap, too late now (he's almost 5)!

 

[HollyCatheryn]

My mom breastfed me for several months (I was 7 months old at diagnosis). I didn't gain weight and had constant diarrhea, but she noticed that when they put me on formula I began crying after the bottles because my stomach hurt and I was still hungry. I hadn't cried after nursing. She also found that like some other moms have noted, if she fed me formula until I was satiated I would throw up. As to what Kim said about Ryan, I would ancourage you that though his weight gain has slowed since being weaned, it may be ok as long as he is still growing. My daughter (who does not have CF) was breastfed exclusively for 13 months and then continued to nurse until she was 31 months (2 1/2 years). She weighed 24 lbs from 15 months to 27 months. Though she didn't gain any weight, she continued to grow and develop wonderfully. She was thriving. She is 37 months now (just over 3 years) and only weighs 33 lbs or so. They go through spurts quite a lot. Even kids that don't have CF sometimes go long periods without weightgain. Just watch and know that *you* know what is healthy for your child. I never worried about Murren's weight. Good for you moms who breastfed through difficulties. But, if you didn't breastfeed, don't beat yourself up. You just make the best choice you can with the information you have at the time. It is hard to get the support you need in our societies, but breastfeeding is almost always in the best interest of the child - even when adjustments have to be made to the "normal" way of doing it. If any of you pumped milk you didn't have to use for you baby, consider donating it to your hospital for other babies or to a milk bank. Many of the larger/major cities now have them. Or you could consider starting one <img src="i/expressions/face-icon-small-smile.gif" border="0">