May 11, 2008,
M.K. asks from Columbia, SC on April 21, 2008
Milk & Soy Protein Intolerance
A little background:
My 2 month old has been through the gauntlet already. My milk struggled to keep with her at first, so she has been on a combination of breastmilk & formula (Enfamil) since she was 3 days old. After about 3 weeks she was hospitalized because she had blood in her stool and the doctors ran a series of tests on her and determined she had a milk protein intolerance. We started her on a second formula (Pregestimil) which was better but she still had problems. Now she's on a third formula (Neocate) which seems to be doing well. She seems more like a normal baby.
I would like to breastfeed her again. The diet without milk or soy protein is pretty restrictive. It's basically no prepared foods. Now I'm pumping my milk and donating it to a milk bank so it doesn't go to waste. Has anyone out there been successful with this?
So What Happened?™
Thank you, everyone, for being so supportive! I didn't realize so many moms out there were going through the same thing. Just knowing that others have been able to breastfeed with all these restricted diets makes me feel like I can do it, too. We're back to breastfeeding, and baby is doing great. She's gained over a pound this month and the spitting up, cramping, and diarrhea are all gone. And I've adjusted to the diet pretty well, although I really, really, really miss ice cream! Thank you for your help!
A.P. answers from Atlanta on April 21, 2008
My daughters are unable to eat soy, dairy, and gluten, and the nursing mom's diet for that is pretty restrictive. The first couple of weeks is the toughest, but then I got pretty used to what I could have, and the short-cuts to cooking allergen-friendly foods. There are some companies that sell prepared foods without the common allergens. From frozen meals to crackers, health food stores carry many, so go spend a couple hours reading labels and figuring out what you can have!!
When you're off of allergens, re-establishing your supply shouldn't be a problem, esp. since you've been pumping. Try www.askdrsears.com or kellymom.com for tons of breastfeeding resources!
1 mom found this helpful
D.H. answers from Atlanta on April 21, 2008
Breastfeed her again, just make sure that YOU aren't taking in any milk, etc., that she is allergic to.
I had to take herbs to keep my milk going, so if that's what you need to do, go to a local health food store and begin taking something of your choice. I took 'Fenugreek'. It worked fine. Some take 'Thistle' (( believe it's Blessed Thistle)). Anyway, that should keep you going. If some of these herbs can make an older sister (not me) lactate to nurse her younger sibling due to mom dying in a car crash, it will most certainly help others that are already lactating.
1 mom found this helpful
T.S. answers from Atlanta on April 22, 2008
Sorry to hear about your daughter's milk protein intolerance. I haven't dealt with that problem personally (my sister did, though), but there's a listserv here in Atlanta with a number of members who have breastfed babies with a milk protein allergy. The listserv is primarily for nursing mothers, although we discuss all things related to babies, and has been a fantastic resource for me for the last two years. If you're interested in joining and getting advice for breastfeeding your newborn, this link should get you to the subscriber page: http://groups.yahoo.com/group/northside_moms/?yguid=26818...
If that doesn't work, do a search on Google (or any search engine) for Atlanta Northside Mom 'n Me. That's the name of the Yahoo group.
Good luck and congratulations on your newborn!
- T. (mom to an energetic 2 year-old boy and a calmer 4 month-old girl)
M.K. answers from Myrtle Beach on April 22, 2008
I had this problem with my son. If I ate anything that had even a trace of milk protein in it he would be screaming all day and night. I was determined to breast feed him though, and finally trained myself to eat only foods that would agree with him. It was very hard. I have a recipe book called THE MILK FREE KITCHEN, which was helpful. There are also many resources on the internet that can help you find ways to keep these things out of your diet. I'm sorry to say that I haven't saved any of them, as it was over 3 years ago when I was going through this. My son outgrew his intolerances after about 9 months, but I stuck to my diet and kept breastfeeding him until 19 months. I am so glad that I was able to do it, even though it was one of the hardest things I've ever done.
Give it your best shot, you'll be glad you did!
P. answers from Spartanburg on April 22, 2008
Wow, you are tough! I don't think I would go through the pain of pumping if it wasn't for my baby.
I understand where you are. I cried for a week while trying to figure out what I could eat. Nothing in my pantry was acceptable. Just to be sure, they did tell you milk, whey and casein? And do it for a week before you go back to nursing.
Be sure to get plenty of calcium. Some rice milk has it, but you have to be sure to buy the one with it added. Also go for OJ plus calcium.
Most of my food was prepared at home - soups, pastas, veggie salads, which is a pain when you're too exhausted to cook. I did find some snacks, but shopping takes forever to read all the labels. Homemade oatmeal cookies with crisco and gingersnaps were my savior (thanks, mom!).
Check out the websites others wrote about. They help. And even though it looks too hard now, it gets easier. You won't even think twice about it when you order from a menu and ask for no butter on the veggies. If you've been able to pump like this, you can do anything for your baby.
I also had to suppliment with formula and used Alimentum. I signed up on their website and got coupons all the time. Very helpful at $25 per can!
Best of luck, whichever way you choose to go.
A.H. answers from Atlanta on April 22, 2008
I've been doing a gluten free, dairy free, soy free, preservative free, artificial color and flavor free diet, on and off for about 8 and a half years now. Once you get into it you find lots you can eat and you and your children feel much better too. All five of my children have been exclusively breastfed. If you have any questions please let me know.
C.B. answers from Charleston on May 11, 2008
I saw your post and just had to respond. My 2 1/2 year old son had the same milk protein allergy that was diagnosed when he was 6 weeks old because of blood in his stools. The pediatrician told me to stop breastfeeding at once because they weren't sure if it was something I was eating. They told me to "pump & dump" or to "pump & freeze". I tried a couple of times, but I just didn't have time to do either since my husband was deployed with the military at the time and I had no help with the baby. And I agree - the diet is very restrictive for the bf mother when your baby has this type of allergy.
Like you, I always had to supplement my son's feedings with formula. Even though I pumped 4 times a day and tried to nurse him at least 3 or 4 times, I just wasn't producing enough milk, so I sort of gave up after his diagnosis. It was the easiest thing to do since I was acting as a "single mother" - because of my husband being gone. I wish I had been more persistent and maybe sought help from LaLeche, but luckily, he's a healthy, brilliant, active 2 year old.
He was allergic to soy, too, so they put him on Nutramigen formula (made by Enfamil). It is really expensive and I didn't find out that my insurance would pay for it until I switched doctors when he was 6 months old. That is something you should look into. I'm not familiar with Neocate, but your insurance should cover a formula if there is a medical necessity for it.
I hope your daughter is doing better now. And I hope you're hanging in there with the breastfeeding. :)
H.W. answers from Spartanburg on April 21, 2008
I have started a blog for this exact problem, after my sister-in-law became the fifth mom I knew in under a year to have her infant diagnosed with milk and soy intolerance. Bloody stools (after weeks of fussiness and some puffiness around the eyes) were the red flag for him, as well. A soy- and dairy-free diet is not as difficult as it might seem. It just takes the right kind of items in your pantry and a cadre of easy recipes. This blog is just starting out, but as we post new items and new recipes it will become a really helpful too, I believe. Sign on and see if it helps you. Check back as we add to it. And good luck! Here's the site: http://dairyfree-soyfree-solution.blogspot.com/
J.G. answers from Atlanta on April 22, 2008
Yes, I have been breastfeeding my son on a milk/soy/egg/nuts/seed free diet for over a year now--he has severe allergies to these foods. It was really hard at first and I lost about 15 pounds, but now that I am used to the diet I hardly feel restricted at all and have gained back all the lost weight (plus some). It's definitely a learning curve to eat without milk and soy, but grocery stores like Whole Foods make it easier. Luckily, 95+% of soy allergic kids can have soy oil and soy lethecin, which opens a lot of doors for processed foods (these two soy products don't have any proteins left in them). It can take a few weeks for all the proteins to clear from your breastmilk, by the way.
J.L. answers from Atlanta on April 22, 2008
Have you tried only breast milk. You would want to avoid all dariy yourself as the protein in cows milk is transfered to mothers milk. . I can see where the Enfamil could be a problem because the base is cows milk and has a different protein than mom's milk.
I would suggest you talk to a lactation specialist call your local hospital for one close to you.
D.S. answers from Albany on April 22, 2008
Though it's more restrictive, it's going to be better for your daughter in the long-run. And, some moms find that if they take pancreatic enzymes it can help their children even more in this situation.
D. S, former long-term breastfeeding mom
D.B. answers from Atlanta on April 21, 2008
I went through the same thing with my son. DOn't feel guilty about not being able to breastfeed. You are doing the best for your baby. Blood in the stool in a tell-tale sign of milk protein allergies so I'm sure that's what it is. Donating your milk is a wonderful thing but I'm sure it takes a toll on you. Just keep in mind that you are keeping your baby healthy and your baby deserves a healthy and sane mom, so if it's all too much for you, then give up the pumping. My son is now 14 months and drinks regular cow's milk but it took a year of that pricey formula to get there. So there is hope. Good luck!
K.C. answers from Atlanta on April 22, 2008
First, I'm overwhelmed that in the midst of all the allergy problems with your sweet new baby, you're still being so generous as to donate your milk. What a lovely thing to do! My son (who is now a healthy, wonderful 9 year old) was diagnosed with milk protein & egg allergy when he as a baby. I too wanted to breast feed, so I began a dairy free/soy free/egg free diet. (The docs advised us to stay away from soy, as about 1/2 the kids with dairy allergy are also allergic to soy.) It's not easy, but it can be done. I also went 'dairy free' when I was breast feeding my daughter (now 6!), since our doc told us that food allergies can have a hereditary component. Thankfully, she has no food allergies. I breast fed both of them for a little over a year. I found the Food Allergy Network to be very helpful (www.foodallergy.org). You'll find lists of ingredients to stay away from, recipes, and even helpful tips for when your daughter is older and eating more foods. You'll quickly get very good at reading labels. There are a lot of rice based alternatives to dairy, like rice milk. You can find lots of these products in health food stores. Even Wal-Mart carries rice milk now. I was able to bake/cook in batches with the dairy alternatives and freeze individual portions. This made life much easier! We were able to add soy into our diet, after about a year, as our son did not have that allergy. That did open up a lot of easy alternatives and I hope that happens for your little girl too! But as you will undoubtedly find, our family adjusted, and the dairy-free diet was probably quite healthy for us. I'm now back to my regular diet, and my son can even tolerate milk protein now ~ but he still drinks enriched rice milk because he likes the taste of it. Good luck to you and many blessings to your family!