Milk, Soy Protein Intolerance in Infants. It is NOT Colic!

In July I had my second child, a baby girl.  I choose to breastfeed my daughter just as I had my son.  My son nursed well so when my daughter started becoming very fussy (to put it lightly) while feeding I knew it was not normal.   At two weeks old, she began screaming (not crying) consistently.  She was showing symptoms of “silent acid reflux,” severe stomach pain, painful gas and foul-smelling stools (this is not normal in breastfed babies).   We took her to her pediatrician asking, “What is wrong with my baby?”  Luckily he didn’t write her off as having colic.  After examining her she was diagnosed with having a Milk, Soy, Protein Intolerance (MSPI).  The proteins were being absorbed by my body and passing into my breast milk that my daughter was ingesting.  Symptoms of MSPI vary but often include at least several of the following:  inconsolable crying, acid reflux, vomiting, blood in the stool, painful gas, foul smelling stool, stomach pain, skin rashes, rhinitis, etc.


*This picture is of my baby girl at 6 months, she still has flare-ups of MSPI but overall is a happy and healthy baby.* 

During the visit with the doctor, he recommended I start the MSPI diet that eliminates all milk and soy proteins from my diet.  Please note that MSPI is not the same as lactose intolerance or a milk allergy.  As a dietitian I was aware of milk and soy proteins but hardly an expert on which foods I should be eliminating from my diet.  I really had to study labels and felt as though I didn’t know what I was doing.  After a month of following this diet we saw very little improvement in our baby’s symptoms.  We eventually met with a pediatrician that specializes in food intolerances in infants and because my baby was not improving she suspected an additional protein intolerance that would not be easily identified.  So for another week I tried a very simplified diet.  Needless to say I was very hungry and everyone in our house was suffering.

At this point we decided it was in the best interest of my baby and me to switch to formula.  We saw an immediate and drastic improvement in the health of our baby when we started feeding her Neocate formula; she tolerated this for about a month when we eventually needed to switch to Similac Alimentum Ready to Feed.  For MSPI babies, Similac Alimentum powder is not tolerated well while the Ready to Feed version is usually tolerated.

As a dietitian I am 100% convinced of the benefits of breast milk and it was very hard for me to no longer breastfeed. But for us it was the right decision.  Many moms with MSPI babies are able to successfully breastfeed their babies during the entire first year.  I’m posting this blog so that it may help other parents and increase awareness.   The research and resource for MSPI are very limited.  So please share any resources you are aware of and post your story to help other parents.  If you suspect your baby may have MSPI please contact me, I’d love to help and provide a link to great doctors in Nebraska.

Here are some useful resources.

http://www.mspiguide.org/

http://www.completechildrenshealth.com/news/articles/what-is-mspi

http://mspimama.blogspot.com/

http://intolerantoffspring.com/

Click here to open a Milk and Soy Free Foods List.  Thank you to Nikki Ford, a HyVee Dietitian for developing this handout.

 

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8 Responses to "Milk, Soy Protein Intolerance in Infants. It is NOT Colic!"

  1. Dawn

    Hi! I am so glad I came across your site. My daughter is 5 weeks old and has been diagnosed with GERD. She is on thickened feeds and her doc has us switch to Good Start formula. I am still noticing issues though and feel it’s something more. She has many of the symptoms you mentioned….vomiting, very frequent forceful painful gas/stool that smells like sulfur, stomach pain and sometimes a hard feeling stomach. I am wondering if she may have a milk protein allergy. We see her doc tomorrow and I am making a list of these items.

    I was wondering why you switched from Neocate to the Ready to Feed Alimentum? I am going to suggest this to her doc and don’t want to have to try more formulas than necessary. Any advice/suggestions you can provide would be awesome!

  2. Submitted by a reader: Hi! I am so glad I came across your site. My daughter is 5 weeks old and has been diagnosed with GERD. She is on thickened feeds and her doc has us switch to Good Start formula. I am still noticing issues though and feel it’s something more. She has many of the symptoms you mentioned….vomiting, very frequent forceful painful gas/stool that smells like sulfur, stomach pain and sometimes a hard feeling stomach. I am wondering if she may have a milk protein allergy. We see her doc tomorrow and I am making a list of these items.

    I was wondering why you switched from Neocate to the Ready to Feed Alimentum? I am going to suggest this to her doc and don’t want to have to try more formulas than necessary. Any advice/suggestions you can provide would be awesome!

  3. I am so happy that my article may help you and your baby. It was such a difficult time for us and I want to make others situation easier. We switch from Neocate to Alimentum ready to feed b/c she started showing similar bad side effects to Neocate. So we slowly switched to Alimentum. Although, some have bad luck with Alimintum and go to Neocate and have better luck. ? Using Pedilyte to make the transition. Let me know if you have questions about that process. Or maybe your Dr. is familiar. She is 8 mos. old now and has been doing well on Alimentum for around 5 mos. Good luck and please don’t hesitate to contact me again!!!

  4. Response from reader: I can’t tell you how much I appreciate your article and response! Our daughter Chloé was diagnosed with GERD around 2 weeks old after a major spit-up and choking bout required a 911 call. We’ve had some very scary moments! But since she is gaining weight well (now 5 weeks old), I felt we were being some what written off when we’d complain about her additional (and numerous!) symptoms. When they continued to worsen, I did my own research and your article was one of the biggest helps in my suspicions that she may have MPI or MSPI! I just had that feeling that something wasn’t right. We saw her doctor again yesterday for the umpteenth time and they’ve determined it is indeed a Milk Protein Intolerance so he switched her to Nutramigen and I see a huge difference in just the 24 hrs she’s been on it. And our insurance will cover it which is such a blessing!

    She was previously on the Good Start actually. It helped somewhat so I think we’ll try going back to it at some point in the future when she is older if the doc okays it. Good luck with everything!

    Thank you again for sharing your story and experience!

  5. Julie

    I have just stumbled on your website as I sit here in the middle of the night searching for answers. My daughter was also born in July of 2010. She is our fourth child. I put her on soy formula at birth (only b/c my others did well on it). Blood curdling cries for hours and hours, weight loss, failure to thrive. After switching formulas several times (alimentum powder did not work so we went with nutramigen) symptoms only slightly better. Told it must be acid reflux and was on Prevacid all year. Have been given run around by dr. Never follows up with any concrete advice. I kept telling him something was wrong all year while introducing foods. Her crankiness was off the chart. At 9 month check up he told me that she should eat whatever I was eating. As I started giving her more foods – the vomiting began. Even had to call ambulance twice b/c she was limp, non responsive to my voice, etc. I have found soy to be the one common factor in every food that has made her sick. To make things worse, the dr actually told me to try giving her soy formula last week to wean her off the Nutramigen. I reminded him of how sick she was as a newborn on soy formula and he said that it didn’t matter now that she is older. She took one sip from the nipple and within one hour became violently sick for several hours vomiting. I called him that night and he never followed up with me or anything. He said that he didn’t recall her blood work indicating a soy allergy so maybe she just knows how to make herself vomit if she doesn’t like something! Even today she took two nibbles out of a Dunkin Donuts munchkin and then vomited for hours. (Later found out they have soy!) I have resisted switching pediatricians only b/c he is my neighbor. I am now realizing perhaps my daughter has MSPI and has had it since birth. She, and our entire family, has suffered the last fourteen months. Only after my research tonight do I realize that the green, mucousy bowel movements she has had all year are not normal. The dr office would always say it was normal for nutramigen-fed babies but I don’t think so. Also, I feel that the dr is taking advantage of our ability to afford nutramigen even at 14 months. We spend about $600/mo on it. I wish he would solve the problem instead. Should I be concerned about the health of her intestines i.e. villi/leaky gut? I am so worried – any advice would be great. I wish I had read this one year ago.

  6. Anne

    I was wondering I have a 7 month old son who at 3 month was found to have MSPI. After numerous formulas we began using and still are using powder alimentum. He does great with it but only takes 3 ozs every 2 hours still. He used to wake 2-3 times a night to eat. Recently he had a nasty stomach bug and since he wakes every 2 hours to eat and most times after eating does not want to be put down. Could the Alimentum not be working for him anymore? He seems like he is uncomfortable but not sure what to do.

  7. Anne, It could be that he isn’t tolerating the formula anymore but it could be other issues. I’d start by talking to your pediatrician about it. My children get a lot of ear infections and then I can’t lay them down. It is so frustrating to guess what is wrong with them at that age. Let me know what your ped says and good luck! It does get easier.

  8. Monica

    My daughter was switched to Alimentum due to reflux and colic I did start with RTF however I get WIC and they only provide the powder. I did notice a dramatic change so I asked her doctor if we could try nutramigen since it comes concentrated and my other son who had the same issues but worse dis well on it, however it has been 4 days on nutramigen with bowel movements at every feeding her doctor said it is normal but I don’t want to believe that. Since she did well on Alimentum RTF should I just switch back to it? She just turned 2 months and I’m scared to keep changing the milk