Milk Soy Protein Intolerance: A journey to finding the silver lining

What is Milk Soy Protein Intolerance?

Milk Soy Protein Intolerance, MSPI is when a baby cannot break down the proteins in milk or soy. Depending on the severity of the intolerance, it can manifest itself it a variety of ways, including: eczema, diarrhea, irritability (that’s an understatement), refusal to eat, weight loss, and blood in the stool.

A new mother, a MSPI baby, and a journey to finding the silver lining.

WEEK 1

Our little bundle of joy couldn’t wait to meet us and arrived a week early on June 28, 2014.  My water broke at 8pm the night before. I labored at home for four hours then was admitted to the hospital. Everything went as planned. Our son was born at a healthy 7 lbs. 10 oz at 7:42am. His APGAR was great and he immediately took to the breast. He was healthy, I was healthy, we stayed the mandatory 48 hours and left the hospital with our son as new parents. The first week at home was uneventful. Our baby was a typical newborn that fed on demand, pooped, and slept a lot.  Because I was on unpaid maternity leave, my husband and I agreed that he should go back to work. That was the first week.

Week 2

The second week I started to notice a difference in our son. He appeared irritable and started to cry often. He was also hungry all the time and he started to sleep less. As a concerned mother, I mentioned this to his primary care and was told that he might have reflux and was feeding more often to soothe the discomfort. We left the doctors with a prescription for Zantac.

Week 3

I’m not a doctor but I knew something was wrong.

The third week was worse than the second week. My son cried for 18 hours of the day. I now fed him every half hour to try to console him. I was exhausted! No one was sleeping and my breast were engorged from all the breast feeding. I was in pain and I could tell my son was in pain. We went to the doctors again. This time the doctor told me that he did not have reflux, and perhaps all the dairy I was eating was making his stomach upset. I was told to take him off the reflux medication and to stop eating so much dairy. I could still eat good dairy like yogurt but was told to stop eating ice cream and milk. As I reflect back, this was one of the dumbest suggestions anyone has every told me but I was a new mother and just wanted my son to stop crying.

My son now started throwing up after his feedings. I was told that this was because my son was over eating to soothe the reflux. I was told to decrease his feeds and the medicine will help with the burn of reflux. Meanwhile I stopped going to breast feeding support group at the hospital. I was embarrassed by my son’s constant crying, and my leaky, over active breast while other mother’s were struggling with their supply.  A couple of my friends had babies around the same time I did and I was so full of jealousy, envy, and spite that they were bonding with their babies while I couldn’t console my baby. I stopped going out all together.

Week 4

By the fourth week, friends, family and my ob-gyn started to question my sanity.

“She’s overtired.”

“That baby sure is colicky.”

“She might have post partum depression.”

“I think breast feeding is too much for her.”

Something needed to change; I was tired, my baby was colicky, and maybe I did have post partum depression. I switched to formula.

NOTHING CHANGED WHEN WE SWITCHED TO FORMULA.

Week 5

Week 5 I saw the doctor to tell them there were no improvements switching to formula. They told me it takes time to adjust to formula and it can take even more time to find the right one. We were put back on the zantac and told to give it time. Despite my concerns I was told that my son was gaining great weight and that’s what really matters.

Week 6

Something broke in me. I snapped.

This wasn’t colic, this wasn’t post partum, new mom jitters, or lack of sleep. I was a new mom taking the experts advice because I didn’t know any better. Well, now I know I’m my son’s strongest advocate and I will do anything to get his needs met, even if that means questioning authority. Something was seriously wrong and I was going to find out what it is and get my baby the help he needs. I scoured the internet for resources and found a childhood friend who went through a similar experience. She had some extra cans of a hypo-allergenic formula and wanted to know if I wanted to try it. Absolutely!

Instantly, my baby started to show some relief. I knew this was the answer and quickly informed my primary care of the changes that I saw in my baby and wanted her to prescribe my son this formula. Instead of seeing relief in my doctor’s eyes, I found doubt. She actually questioned my reasons for wanting this formula prescribed and treated me like I was looking for free formula. She wanted me to go back to the old formula or breast feeding for three days, so she could take a stool sample and test it for blood to prove he had MSPI.

MSPI: HEAR MY WAR CRY!

Enough is enough! I said NO! With that as my final answer, she told me there was nothing else she could do and I would need to see a children’s gastroenterologist. I thought this was progress, a specialist is what I believe my son needs. However, I was told they are located hours away from my home and that there are waiting lists that can take up to three months. Despite what I felt like were her multiple attempts to deter me from seeing one, I was adamant for a phone number to schedule the appointment.

I called Children’s hospital and was able to see a gastroenterologist the very next day!

I went there with three pages, back and front documenting my son’s feeding, crying, and sleep schedule, ready to fight. Instead, I was welcomed by a doctor who listened, heard my concerns and VALIDATED every concern I had. In fact, he told me MSPI is pretty common and my son was displaying almost all of the symptoms. He asked for a stool sample, but acknowledged that there might not be blood in the stool for a number of reasons including switching to a formula and the severity of the MSPI. He gave me a prescription for the formula and even offered to have me see a nutritionist if I wanted to start a dairy/soy free diet to start breast feeding again. It was such an amazing experience to feel heard and find the help my son needed.

My son did end up having blood in his stool at his 3 month check up, but due to the gastroenterologist ascertaining my claims, I was treated differently with my primary care doctor. My son was instantly prescribed an elemental formula and an apology for them not acting faster on my son’s MSPI.

This experience has changed me forever

I recently took a silly online personality test and was shocked to see I scored the highest in assertiveness. This was surprised me because I do not consider myself assertive at all. I was the shy child who hid behind my parents legs, the student who did all her work and never asked questions, the worker who attended every meeting and took notes. I never spoke back and always did what I was told.

That was the old me, Pre-MSPI.

Since my experience with MSPI and the obstacles that I needed to go through to get my son the care that he needs, I have found my voice, my strength and my self-worth. I no longer second guess myself and now take charge of my life. I speak up, I share my knowledge, and I question authority.  MSPI has changed me. I hope no one ever has to experience what I went through but if you do, I hope you can turn a negative into a positive and find the silver lining.

Find Support

My journey with MSPI was a challenging and lonely experience. However, with my second son, I found support that helped tremendously during those long, sleepless nights. If you suspect MSPI, I highly recommend the Facebook support groups MSPI AND REFLUX MAMAS and REFLUX REBELS