Entry #3 CF and Nutrition: Milk

Nutrition plays an enormous role in cystic fibrosis. A major reason O continues to be healthy is due in part to his diet. I've taken it upon myself to learn as much as possible about CF where nutrition is involved, mainly because from day 1 as his mother I am the source of his nutrition.

I am a major advocate for breastfeeding. Prior to O's birth I did a lot of research on breastfeeding. Having breastfed each of my baby dolls, I had always desired to breastfeed my real babies too. I learned so much while I was pregnant on the importance of breastfeeding for both baby and mother. So, at our first official visit with the CF doctors I was devastated when the doctors and nutritionists "warned" me that I may have to give up breastfeeding because it may not be adequate. According to their specialists breastmilk does not have enough calories for a child with CF.

Being the stubborn, hard-headed woman that I am, I basically said "I will breastfeed this child, even if that means I feed him every hour. You can either get behind me on that, or go suck a lemon." I am a FIRM believer that God created your breastmilk especially for your baby. Meaning that no matter the circumstance, your milk is adequate for your baby's needs. If O required heavy calorie milk, than God would provide heavy calorie milk (or the stamina for me to breastfeed every hour).

I breastfed O exclusively until he was 5 months old (when we introduced cereal, which we mixed with breastmilk). I continued nursing O until he was 22 months old. His doctors were, and still are, astonished with how big O is, and were amazed that my breastmilk was adequate. I simply believe if every CF mom had some encouragment, ate healthy, and was as stubborn as me--they too could continue breastfeeding exclusively.
O constantly rates in the 95% on the growth charts--much bigger than many CF kids. Yes, there were a few days when I did nurse him every hour, but for the majority of those early days O followed the "Babywise" schedule. (Please read "On Becoming Babywise" by Ezzo.) Between being breastfed and being on a regular consistent schedule, I believe O established good eating habits that have helped him thrive despite his condition.

As O got older the CF nutritionists insisted that we give O cow's milk. Before I became pregnant with O, I had several unresolved digestive issues. I went to many doctors, and none of them found the problem. Our chiropractor had me do a cleanse diet (eliminating all potential food allergens for a period of time, and then slowly reintroducing them). I also read a lot on nutrition. We changed our eating habits quite a bit--eating more natural and organic foods, very little processed foods, and pretty much eliminated some other foods. (I highly recommend "The Maker's Diet.") Through various readings I learned that it's a good idea to NOT give children under the age of 2 any cow's milk products for various reasons. (I won't bore you with all the info on why--go look it up.) Since I was breastfeeding and pumping additional milk for O's needs we didn't have any reason to give him cow's milk until he was about 2 years old.
Not long after he started eating milk, cheese, yogurt, and even ice cream we noticed O having lots of digestive issues--mainly extremes like severe constipation or the opposite--severe diarrhea. This was really hard on him, because he was in the midst of potty training. After a few accidents that really embarassed my sweet and shy little boy (even though we never scolded him about potty accidents, he seemed very frustrated), I was determined to find the answer to these problems.
We reduced the amount of cow's milk products he ate, and increased his enzymes. Still, he was struggling with regular constipation. I received a call from my husband one day while at work.
"Don't panic," he said. Uh oh. He continued to describe the scene (gosh, I hope you're not eating while reading this blog): A small portion of O's rectum was outside his anus. My husband said it looked like a red flower blooming out his bottom. Of course, I was freaked. Insides are supposed to stay inside--not outside! I told him to call the CF center and the emergency room, and ran out of the office as quickly as I could to get home.
When I got home my husband updated me. The emergency room said to put a moist cloth on the rectum and quickly bring him in, and he hadn't yet heard back from the CF center. However, when my husband had attempted to place the moist cloth on O's rectum, it had gone back inside. As we waited for the CF center to call, I jumped online to search for information. Before I could download much, the phone rang. A very calm and collected doctor told us that it was perfectly normal for a CF kid. NORMAL!?!?! I think I shouted this at the time. Geez, you should have a manual about these supposed "normal" CF things! I believe the doctor chuckled, and suggested that I write a book for other CF parents on these things...hmmmm.
O continued to have, what we learned is called, "rectal prolapse." When he pushed hard, well, out it came. We thought maybe his potty was the culprit (possibly sitting in a straining position). We thought maybe we allowed him to sit too long on the potty. He continued to also have constipation. I went back to my books about cow's milk not being the best for kiddos. I read that goat's milk was a great alternative, as it more closely resembles breastmilk and is easier to digest. We tried it out. His constipation pretty much went away, and the rectal prolapse lessened dramatically. However, any amount of cow's product immediately brought it back.
On his next visit with his CF specialists we saw a new doctor. This doctor made a comment about O's very round belly. Now, since O was born I had asked ALL of his doctors about his round belly, as it just didn't seem normal too me. No one seemed to think it was an issue--maybe just a small hernia one said.
This doctor felt his belly and told us that he had distended bowels, and that his intestines were full of, well, poo. (Argh, I KNEW his tummy wasn't right--yet another reason that as a mother you should ALWAYS trust your gut, no pun intended.) He recommend regular doses of Miralax, which worked wonders. O gets a small daily dose of Miralax, and drinks only goat's milk. We occasionally allow him cow's cheese, yogurt, and ice cream, but only in moderation. O does great with this, and hasn't suffered rectal prolapse or any significant constipation in over a year.

Another note on dairy products (cow's or otherwise): Mucus. Yuck. CF kids have a lot of mucus. Milk increases mucus production. Bacteria and viruses LOVE mucus. What does this tell you? In cold and flu season we drastically reduce the amount of mucus-producing foods O eats. This includes mainly dairy products and wheat. GASP! Just like our nutritionist panicked when she heard this, I'm sure your's will too. Please note I AM NOT A NUTRITIONIST. I'm a mom of my CF kid, who is probably TOTALLY different than your CF kid. (They're all different, you know?) I am suggesting that you read as much as you can, and try it out for yourself. Now, dairy provides a major source of vital nutrients: calcium, vitamin D, calories, folic acid and more. O gets goat's milk daily, even during the winter months, unless he has a cough. I must note that we replace the nutrients he normally gets through milk with other less-mucus-producing foods (green veggies, calcium-enriched juices, fresh fruits, salmon--yep, my kid loves it, and others). We also have supplements on-hand (folic acid, liquid calcium, and others) just in case any of his tests results show a deficiency. He has only been low on vitamin D, but that usually is due in large part to the fact that his test is run in April when he has spent most days inside rather than outside in the sun. O thrives on his diet, and I encourage you to research and learn more on the foods you give your child (whether he or she has CF or not). If you're pregnant or have a newborn--please, breastfeed your baby. It will be the best thing you ever do for your baby.

ADDED LATER:
O did not have any typical CF symptoms, or become pancreatic insufficient until he was 6 months old.
One week after O stopped nursing I became pregnant. After E was born, O saw me pumping and came running with a cup! I happily obliged, and gave him any extra milk I pumped.

Resources:
http://www.llli.org/llleaderweb/LV/LVOctNov02p99.html
http://www.cfnutrition4life.com/site/news.php