When I was first found out that Little Deer had MSPI, I was completely overwhelmed. Altering my diet while also being a first time mom (and essentially a single mom with my husband deployed) seemed unattainable. It was so helpful for me to read about other people’s journeys through the MSPI process and I found it very encouraging to know that most children outgrew it. A lot has changed since I wrote my first MSPI post so I thought I would update you all on where we’re at now. I thought having a second child with MSPI would be much easier since I knew what to expect, but new challenges have definitely kept us on our toes. Before we get into the new challenges we’ve faced with Baby Deer though, here’s how Little Deer’s been doing:

girlsMy two sweet MSPI girls

LITTLE DEER – 2 YEARS OLD

Little Deer was diagnosed with MSPI when she was around 3 months old. I was able to cut dairy and soy completely out of my diet and continue breastfeeding her. While difficult, being forced to change my diet actually helped our family to adopt a healthier way of eating. Though I didn’t need LD to be able to tolerate a ton of dairy, I really wanted to not stress about her eating trace amounts of dairy or soy while out at a restaurant or a friend’s houses. We decided to do our first dairy trial when LD was 9 months old. She had just a few bites of yogurt but unfortunately her system wasn’t ready yet and she woke up vomiting the following night. Around the 10-month mark I caved and had a few pieces of halloween candy and discovered that she was able to tolerate a small amount of dairy in my system. At Little Deer’s first birthday party I had a cupcake and some cheese and she was totally fine. From that point forward I was able to eat dairy and soy and she tolerated it in my breast milk happily. What a relief! It was so hard to be on such a restricted diet for so long.

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We weaned at 18 months when I was pregnant with Baby Deer, but I didn’t feel in a hurry to do another dairy or soy trial with LD. We had all grown so accustomed as a family to eating essentially dairy/soy-free that I didn’t feel there was a need to try and push it. A few times I accidentally bought crackers that had some soy in them and she would develop cold-like symptoms (congestions and a runny nose) but that was it. Those symptoms were so different than typical MSPI reactions that I thought she may have a separate allergy of some sort (she’s finally seeing an allergist this week).

On Thanksgiving Little Deer was so excited about the pumpkin pie that we decided it would be a good time to finally trial dairy again. She was almost two at that point; it had definitely been a while. She had some pumpkin pie, a little whipped cream, and even butter on her bread. And guess what? No reaction! We were so happy. Over the following weeks we kept giving her little bits of dairy and she tolerated it great. It finally seemed as though we didn’t need stress about what she ate anymore. In January LD started a morning preschool program and I didn’t worry about her eating dairy/soy while there. Unfortunately, by February she started to develop eczema on her stomach and thighs. We again got strict about the dairy and soy, applied some hydrocortisone to the eczema, and it cleared right up. Hopefully our trip to the allergist will give us a little more information about what may be going on with her system. Though it seems she can’t consistently eat dairy on a daily basis at this point, she does seem to be improving with age which makes me really happy. Hopefully in the coming years her MSPI will be totally gone! In the meantime though we’ll see if there’s a food allergy component and then move on from there.

BABY DEER – 6 MONTHS OLD

Before Baby Deer was born I knew there would be a good chance that she had MSPI as well. I eliminated dairy and soy when I was 37 weeks pregnant to prepare my system and to have a clean slate. A quick dairy trial when she was a few weeks old showed me that she too had MSPI. Unfortunatley, breastfeeding proved even more challenging this time around (I wrote a dedicated post all about that here). Unlike her big sister, Baby Deer seemed to react to the proteins in more foods than just dairy and soy. That’s when I learned about Food Protein-Induced Enterocolitis Syndrome (FPIES). MSPI is essentially FPIES to dairy and soy, so FPIES is the big umbrella term for when kids react to proteins in certain foods. Through trial and error during my elimination diet I discovered that Baby Deer had FPIES to dairy, soy, eggs, rice, and possibly sweet potato, avocado, and corn. There were more foods I could not identify as well (thus the switch to formula).

That period of time where I was trying to alter my diet and find all the offending foods was very difficult mentally, physically, and emotionally. When we were switching Baby Deer to formula at 4 months we also saw a pediatric GI doctor. With Little Deer we handled all of our MSPI issue with our pediatrician, so this was new for us. The GI doctor was very friendly and helpful, though our appointment with him reminded me of why it’s so important sometimes to follow my “mother’s intuition.” He was concerned about BD’s reflux and how infrequently she was having bowel movements and wanted to put her on several different medications. I wanted to wait for her little system to adjust to the formula and also see if she responded positively to thickening her bottles. I’m glad I trusted my gut because sure enough, though there were a few hiccups, after a couple of weeks her body got used to both the elemental formula and thickener and she’s been doing great.

Another new component this time around has been seeing an allergist. I assumed since FPIES is a gut-based disorder that the GI doctor would know more about it, but I was pleasantly surprised to find how informed the allergist was as well. He kept reiterating how both he and the GI doctor were a team when it came to helping FPIES children. Though not always the most accurate at this age, we did some skin testing with Baby Deer during that appointment to see if she was dealing with any allergies on top of the protein issues. The tests showed she reacted a tiny bit to fish but that was it. Phew!

I am so glad we have finally gotten to a more stable point with feeding sweet Baby Deer. I do miss breastfeeding and am still sad that it didn’t work this time around, but I see how happy and healthy she is and I know we made the right decision. At 6 months old she is currently doing great on her Elecare formula with Gelmix thickener. We’re about to jump into solids which I’m a bit more nervous about, but we will take it very slow and avoid those foods that I think she’ll react to.

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I’ve had a couple of friends over the past year or so who have had babies with MSPI too. It’s really surprising to me how common it’s becoming! Over the last couple months I’ve written several of these friends emails with lists and links to more resources. I’m hoping to compile a list of all of those FPIES/MSPI resources into one big post soon!

Does your little one have MSPI? Please share how you’re doing and let’s support one another!