Dealing with Extreme Food Intolerances in our Baby

Sometimes babies have a hard time processing breastmilk because of food mom eats - this isn't that uncommon.  In fact our first baby had MSPI (Milk-Soy Protein Intolerance), and I had to avoid dairy and soy while breastfeeding until she outgrew it around 15 months.  What is uncommon is a baby that is so sensitive that she can react to EVERYTHING mom eats.  Unfortunately, that seems to be where we're at now with our second baby and why I've been so MIA from the blog and Etsy shop these last two months.  | DISCLAIMER:  I am not a medical professional and am not suggesting medical advice - I am just sharing our experiences.  Please always consult your own doctors and specialists before trying anything. |
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Dealing with Extreme Food Intolerances in our Baby

Going on a TED

Our baby's poops were "off" from birth... at first they were blamed on the medications I got during my c-section (she was breech), then on dairy/soy which I quickly cut out of my diet, but then she started having blood in her stool. After a particularly scary (bloody) diaper I immediately went on a Total Elimination Diet (TED). A TED is when you cut your diet down to just a handful of low allergenic foods in order to get your baby to "baseline" (baseline being no more bad symptoms, whatever that may be for your situation), then adding one pure food in a time to make sure your baby still does well with it in your diet. With the okay from our baby's GI specialist I started my TED of turkey, sweet potatoes, quinoa, and clean olive oil (a lot of olive oils are cut with soy or corn oil, and there are only a few brands that are truly "clean"). I also cut out all my vitamins and supplements in case those were affecting her.

Over the next few weeks things slowly improved (less blood and mucus, better color), but we couldn't quite get to baseline. I then started infant probiotics and epsom salt baths for her and a digestive enzyme-probiotic combo for me, with every new thing or change in dosage acting as a new trial... giving every little change a week to see if and how it affected her. Vaccines at her well-child checkup were treated the same as well.. each one done separately at least a week apart (and vaccines did cause her lower GI issues to flare up unfortunately.. so after each vaccine we'd have to give her a bit more time to settle back down). Everything I ate was recorded in a log with times and every poop she did was also recorded with times, descriptions, and even photos. It was a very, very tedious process and the results constantly felt like two steps forward, one step back.

After about 1.5 months we were finally flirting with baseline but couldn't quite keep there.  Nevertheless, I was desperate for more food varieties... my back was starting to hurt every time I ate - my body was getting tired of digesting only the same three foods each day and even though my blood work had been coming back normal this diet was still taking it's toll.  Unfortunately, every time I tried to add a new food in our little one would seemingly fail it (more mucus in stools, blood, and/or acidic poops).. it was incredibly disheartening and depressing.  It got to the point where I felt extreme guilt and dread after sealing Christmas cards because I didn't know what the glue was made out of and if it would affect our baby.  

FPIAP, FPIES, or Histamine Issues?

We won't know exactly what's going on with our baby until she starts solids since breastfeeding essentially "filters" everything to an extent.  In general most kids with these kinds of sensitivities seem to fall into at least one of three diagnoses: 

Food Protein Induced Allergic Proctocolitis (FPIAP) - This is generally considered the "milder" version that only affects the lower GI tract (blood, mucus-y stool, etc) and most will outgrow it by around 1-year old (we pray to God she has this version).  Some also refer to this as “Chronic FPIES” or just “Allergic Colitis.”

Food Protein Induced Enterocolitis Syndrome (FPIES) - This is typically a more severe version of FPIAP that also affects the upper GI.  The most common adverse reaction to a trigger involves severe vomiting-to-shock, that often requires a trip to the ER to get under control.  There are foods that are considered to be more "common" triggers for FPIES but literally any food could be a trigger.  Most will outgrow it by 3-4 years old.  

Histamine Issues - This includes Mast Cell issues.. these poor kids have trouble regulating histamine levels in their bodies and anything and everything can effect them.  It can be a very difficult and overwhelming life-long road to navigate.  

The Decision to Go to Formula

I wanted to continue breastfeeding SOO badly - I love breastfeeding and the peaceful bond that it brings.  However, as hard as I tried I just could not keep our baby at baseline and it was not beneficial for her gut or for me mentally or physically to continue such a restrictive diet that seemingly got us nowhere.  

If our TED had been more successful and I was able to add back foods into my diet and keep our little one's diapers clear I would have been more than happy to continue with what I was doing, but unfortunately that wasn't the case for us.  Once we hit two months on this diet I decided it was finally time to try formula.  Her GI doctor made a recommendation to try first and while those first two days of bottle and formula feeding were SO hard (I cried more than our baby did), we finally had success.  Knock on wood, she's been doing awesome since and it's such a weight off my shoulders to not have to monitor everything as strictly as before.  

Going forward we're taking vaccines very slowly and will likely delay the introduction of solids until at least 7 months.  We're closely monitoring everything with the GI and will likely get another opinion at an allergist too to get more guidance on everything going forward.  I pray to God she has the more mild version of things and outgrows it quickly, but only time will tell.  Best of luck to other mamas out there going through similar things, it can be so hard.  

UPDATE:  The doctors believe she has FPIAP (which would be the best-case scenario), and I'm really hopeful that that is the case and she will hopefully outgrow all this in the coming months.  We've very cautiously and slowly started solids at 8 months and hopefully will keep progressing.
SECOND UPDATE: Now at almost 15 months we’ve made some great progress but she’s still very sensitive to new things and even vaccinations. We take everything slowly and allow for an adjustment period with new foods and most have been passes as long as she has time to adjust and get used to them. It’s still a very slow and tedious process...  Hang in there!

DISCLAIMER:  I am NOT a medical professional and am NOT suggesting medical advice.  I am simply sharing our experiences.  Do not take any information I provided as fact or advice.  Always consult your own doctors and specialists before changing your diet, adding supplements, or going on a TED.  Always get medical approval for yourself and your baby.  

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