Apr 7, 2014

No Milk Mama: Diagnosing the Milk Protein Allergy

That's Just Davy!
Silly boy.
Not so silly allergy.
 
Learning that I needed to go Dairy Free while nursing was a huge shock. And a huge lifestyle change. I actually never even blogged about that time. I was so full of emotion and doubt and so overwhelmed that I didn't write anything down. I didn't even mention his dairy allergy on the blog until months after the diagnosis when the twins started solid food. Despite the lack of blog content, it is one of the things I get the MOST questions about. So today I'm launching a series on our dairy free life. If you have a topic you'd like to see covered, let me know.
 
If you are a nursing mom and have received the news (from a lactation consultant or doctor) that you should try dairy elimination, my biggest advice to you: YOU CAN DO IT! It will be hard. It will be a change, but you will survive!
 
 

Davy's Initial Issues

The initial diagnosis of a milk protein intolerant nursling doesn't come easy or quickly. We had a fussy baby who spit up constantly and would shriek and arch his little back. Classic symptoms of GERDs. So Davy was given reflux medications. They helped, but didn't eliminate the problem. He was given a stronger prescription. Again it helped. But didn't eliminate the issues. He got RSV when he was still a tiny little thing (both boys got it even before their due date!) and so his chronic cough was written off as a lingering issue from that. He was having green, runny stool but I was a first time mom and had heard that baby poop from breastfed babies was funny and so didn't read anything into it or ever mention it to the pediatrician. All of his symptoms were nicely explained by something else. At 3 months old, after nearly 6 weeks of coughing and a lifetime of fussy, our pediatrician sent us to a pediatric GI. The cough had gone on too long to still be RSV and combined with his other symptoms our pediatrician was concerned.
 
While we were waiting for that appointment, Davy had his first blood diaper. That one was the big clue! Blood in the stool couldn't be explained away by any of the other issues the doctors were considering.
 
 
A Milk Protein Intolerance
The Pediatric GI diagnosed him with a milk protein intolerance and told me to eliminate all dairy and all soy from my diet and come back in three weeks. So I did.
 
While the treatment is one you can do from home without the aid of a doctor, from the symptoms alone we never could have or should have self-diagnosed.
 
Self-diagnosing with the aid of a helpful mom friend or Dr. Google is not the answer! According to our pediatric GI, their is more FALSE information about milk protein intolerances and allergies out in the world than any other infant issue. This is potentially dangerous to families who are actually suffering from this issue. The false information abounds because a mom reads lists of symptoms and information and self-diagnosis. She then stops eating obvious sources of dairy (but typically didn't read enough to do a true elimination diet and also eliminate "hidden" dairy) and in three weeks her baby is less fussy/less gassy/happier. She assumes she was right and it was dairy, when in fact her baby is less _____ (whatever the issue was) because baby is now three weeks older and three weeks more mature. At a few months old, a few weeks is huge! This mom then tells all her friends that her baby has a milk protein intolerance but it isn't a big deal and she can sneak dairy here and there. She also tells all her friends that her baby outgrew his/her milk issues by 6 months. This leads to false information that downplays the severity of the issue for kids who truly have it!
 
For babies with a TRUE milk protein intolerance, the nursing mom can't sneak dairy and has to eliminate ALL dairy. Even the small amount of casein in some processed crackers is enough to cause a problem. When we began this journey last April, I took the printout from the pediatric GI to the store with me every time so that I could read labels and verify all ingredients. (The nice folks at KellyMom have the same information in a nice little wallet size handout. But, I still ate. And I ate well! Going dairy free doesn't mean going hungry (even if you are like me and previously lived off of milk and cheese).
 
Our dairy free fridge.
Dairy free breastmilk.
Almond milk. Coconut Milk.
Coconut Yogurt. Dairy Free Probiotic Drink.
Lots of options!
 
I made the choice to go dairy free rather than switching Davy to a hypoallergenic formula despite the personal difficulties after a long discussion with our doctors and consulting other moms with dairy intolerant babies and kids. The hypoallergenic formula is expensive, is smelly, is not well received by many kids, and the first ingredient is high fructose corn syrup. It is an awesome thing that this formula is available for families who need it. Fed is best! But, in this instance I knew that I had the ability to produce enough breastmilk and I could accept being dairy free in exchange for Davy getting a more complete source of nutrition.
 
Tandem Nursing the Twins
 
After three weeks, it was like I had a whole new baby. In April we met Davy for the first time! He was smiley and happy and full of personality.
 
 
From Intolerance to Allergy
As he got older his reactions to my dairy mistakes got worse. His reactions were no longer all in his GI system. In fact, the baby body wash we were using that had a small amount if whey started causing skin issues. His diagnosis was changed from a milk protein intolerance to a milk protein allergy due to the spectrum of reactions.
 
 
As he started eating solids on his own, we dealt with even more severe reactions because my body could no longer help filter out the proteins. With consumption of dairy he vomits uncontrollably. His little mouth gets red hives around it. On one occasion his tongue swelled. And we always have multiple days/nights of pain (so poor sleep) and horrible diapers. We have been warned by our medical team that because he is multi-symptomatic we need to be very vigilant.
 
Source
I ordered this for Davy and will write a full review once I have it!
 
Every reaction will not take the same form and as a multi-symptomatic child we have to be prepared that any exposure could be the time he has an anaphylactic reaction. Your kids symptoms might not be the same as Davy's. And they might change!
 
 
Common Infant Symptoms
  • Green, runny stool (Had as infant. Harder to tell now in the days of solid food.)
  • Blood tinged stool (Had as infant. Has never had enough exposure to cause since then.)
  • Skin rashes (Yep.)
  • Chronic nasal stuffiness (Yep.)
  • Vomiting (Yep.)
  • Diarrhea (Sometimes.)
  • Excessive abdominal discomfort (Yep.)
  • Cramping (Yep.)
  • Coughing (Chronic. Even with dairy eliminated. Might be asthma not dairy....)
  • Mimic of GER (gastroesophageal reflux) symptoms (Had as an infant.)
  • Heartburn (Unknown. He never told us. Little guy needs to speak up.)
  • Spitting up (Had as an infant.)
  • Gassiness (Yep.)
  • Constipation (Never had this problem. See runny. See diarrhea.)
  • Hives (Yep.)
  • Swollen tongue (once)
  • Anaphylactic Shock
  •  

    9 comments:

    1. Oh goodness! My son had milk and soy protein intolerance, but thankfully outgrew it. It was a very scary time for me as any dairy (even the hidden ones) would make him projectile vomit and choke.

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      1. How old was your son when he outgrew it? Davy's has gotten worse not better as he has gotten older. I'm still hopeful he'll outgrow it though! He has for the most part outgrown soy so that gives me hope!

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      2. He was 9 months old when he finally outgrew it. Now he eats both without any problems.

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    2. It is amazing to me just how difficult it can be to figure out what is in foods. I had no idea about all of the hidden foods until I had to watch out for my own food allergies. Maybe someday we will be able to look at the back of a product and know it is safe without having to look up every ingredient to see what it really is.

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      1. Have you seen the new labels that will go on foods (I think in 2016? But I'm not sure about the year) They are much improved!

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    3. Oh my goodness, the picture of them nursing is soooooo cute! I love it! I SO wish my girls had taken to breastfeeding more, but they are just picky eaters I guess. I just pump now, but I am glad to still be able to give them breastmilk at least.

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      1. This is Holly, not Ryan btw.

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      2. I pumped exclusively for the first 3.5 months until they figured out latching. And even then I had to pump because when they were tired they wouldn't latch. Breastfeeding was never easy for us.

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    4. I found your blog via the momfessionals link up. We had a very similar experience with my little guy. He has a protein intolerance and still struggles with an upset stomach. I never thought about hidden dairy in processed foods!

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