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our experience with MSPI

**I am not a medical professional, and I’m not offering any medical advice or diagnosis. This post is strictly to share our personal experience with MSPI.

The past few weeks have been some of the most stressful Jeff and I have faced as parents. Having a sick child is all-consuming and terrifying. While Eleanor was never in any immediate danger, it has been a long, frustrating process to figure out what’s wrong and how to fix it.

For those of you who have never heard of MSPI, it stands for Milk/Soy Protein Intolerance. Though it sounds similar, it’s not the same as a milk allergy. MSPI is when a baby can’t properly digest milk/soy proteins which causes irritation to the intestinal tract. The symptoms run the gamut from extreme colic to bloody diapers and chronic congestion to failure to gain weight. It often surfaces when a baby is only a few weeks/months old, but in our case, Eleanor had no issues until she was nearly 7 months.

Here’s our story with MSPI…

mspi
It started the 1st week in January with a bloody diaper. Jeff showed me the abnormal diaper with a small streak of blood on Sunday morning, by 4:00 that afternoon, the blood had consistently increased to the point that we were alarmed. Eleanor was acting mostly happy and didn’t have a fever, but the blood was so disturbing that we took her into urgent care to get checked out.

She had tried winter squash for the 1st time just 24 hours before, so we were thinking she could be having an adverse reaction to the new food. Urgent care was a huge disappointment as they gave us no information and sent us home to monitor her diapers. The blood continued, so we saw Eleanor’s pediatrician the following day. We were instructed to take Eleanor off all solids to see if that made a difference. It didn’t.

The abnormal diapers continued, and I started to fear what the next diaper change would bring. Some days were worse than others, but the blood was consistently present. We were referred to a pediatric gastroenterologist to find answers. It was a week before we could get in, and in the meantime, I asked my pediatrician if I should modify my diet. She agreed that I should try removing milk products to see if it made any difference. On January 14th I went dairy free.

mspi
The morning we visited the GI, Eleanor had a diaper with 100% blood. It was terrifying, but I knew we were on the right track to get answers. The specialist was amazing and immediately put me at ease. He looked me square in the eye and told me how beautiful, strong and thriving my baby was – and more importantly that everything was going to be ok.

He began with the basics and ordered a laundry list of blood work and stool testing. He was looking for everything from parasites to colon inflammation. 10 days later we had the results and everything came back normal. Phew!

Eleanor had her last bloody diaper on January 20th. We met with the GI doc again who said we would move forward on the assumption that Eleanor had MSPI. It’s only diagnosable by performing a biopsy of the baby’s gut, so many times a MSPI diagnosis is assumed when symptoms get better with an elimination diet rather than putting a baby through any invasive procedures.

mspi baby
Because I personally have a history with milk allergies, the GI referred us to an allergist. Eleanor was given a scratch test of the most common food allergies, all of which came back negative. Again, a huge blessing. The allergist did his best to explain the situation to me by saying that if he had to choose between a milk allergy or a milk intolerance, he would choose the intolerance every time.

Eleanor’s gut can’t handle the proteins now, but her chances of outgrowing the condition are good. Her reactions will never be life threatening, and with the proper diet, MSPI can be managed. She developed her issues later than most babies, and her symptoms were relatively mild. She was never in any pain – that’s the point I consistently focus on when I feel overwhelmed by our situation.

mspi
Selfishly, maintaining a dairy and soy free diet is not easy. I love yogurt, cheese and milk! I love ice cream and cream cheese! I love EVERYTHING I can’t have, haha! It’s difficult, but it’s worth it. My heart still skips a beat when I go to change a dirty diaper with the fear that blood will reappear, so when I see the “all clear,” I know my efforts are well worth it!

Eleanor has been given the green light to eat solids again. We’re taking a conservative approach and introducing 1 food for a week at a time. She has strictly had peas and sweet potatoes at this point and handled it really well. The GI said no grains, so her rice cereal is out of the question. Our next step will be meeting with the doc to determine our plan for weaning her off breast milk around a year. I’m guessing she will not go straight to cow’s milk, so we’ll need an alternative.

mspi
Our only ongoing issue is that Eleanor’s weight has plateaued for the past month. She hasn’t gained an ounce, but she also hasn’t lost (trying to see the positives here). An irritated digestive tract can account for some of the failure to gain as her body was not equipped to absorb all of the nutrients she needs. Also, breastfed babies are known to taper off around 6-8 months as they become more mobile. Just as we did in her 1st few months of life, we’re back to weight checks with the pediatrician.

It’s a huge source of anxiety for me. As her provider, I want nothing more than for her to chunk up and gain. All 3 of the doctors we’re currently working with remain positive and supportive of my decision to breastfeed and are not worried about Eleanor’s weight at this point. They’re more concerned with long-term trends and focus more on the fact that Eleanor is 100% developmentally on track.

Interestingly enough, there is an ongoing debate in the medical community about MSPI and whether it truly exists. Apparently it is only diagnosed in the midwest and is basically nonexistent on the coasts. One argument is that many MSPI babies are misdiagnosed with colic.

I’ve also read that ethnicity is a major factor and that people of Scandinavian descent are more prone the protein intolerance (and I’m mostly Norwegian). I’m certainly no expert, so all I can say is that a milk/soy elimination diet has made a world of difference for my baby. And that makes me a happy mama :)

Your turn:

Do you have any experience with MSPI?
Any suggestions for spicing up an elimination diet?

 

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