MSPI Graduate!

So we are still battling Colin’s throat/swallowing issues, with no new information despite a barium swallow test recently, but I decided it was time to recognize/celebrate that Colin no longer appears to have any reactions to milk, soy or any other foods.

MSPI Recap:   Colin was diagnosed FPIES and MSPI between 6 weeks and 3 months old.   I stopped eating any dairy and soy while nursing and then went on to do an elminiation diet myself.   At age 1 Colin could only eat corn, wheat, apples, carrots and chicken safely.   He nursed until 18 months and I ate only his safe foods.  We supplemented with Neocate after he turned a year old while slowly trying to add safe foods. Dairy and chocolate were our last ones to conquer. Colin is almost 5 and although I never would have believed this day would come, he is now free to eat anything he wants.

My guess is that if you are reading is, your next question might be, “How did you go about trialing these big triggers?”

Well for every food Colin has had reactions to, we trialed it by starting with the smallest amount of food and usually baked into something.  So for milk, we tried breads with milk as a minor ingredient.  Then we tried muffins and pancakes since they had more milk in them.   Then we tried 1 spoonful of cow milk yogurt.  Then a week or two later a few spoonfulls of yogurt in a day.  Then we tried cheeses.   We let a week go by in-between these food samples since Colin’s reactions are usually 24-36 hours after ingestion.  After cheese we tried a few licks of a low fat ice milk ice cream before trying full fat dairy.   We were amazed that he kept passing all the trials!

For soy we tried soy lecithin and then soybean oil in baked products.  Then we tried packaged products with soy flour/soy protein ingredients which had really given him issues in the past.   After passing that test we tried to get him to eat something with soy sauce in it.  He took one tiny bite.   Colin doesn’t like any kind of soy sauce based things or Chinese food.   We can’t give him a lot to find out if he’s 100% clear of this intolerance, but since he can tolerate the soybean protein in other foods, I’m taking this one off our list of things to avoid.

The day Colin got to eat his first ice cream cone, I  had tears of happiness.  I wish I could show you how his face lit up when we said he could have a real ice cream cone.    It has been SUCH a long road.   There have been so many firsts for him in the last year.   His first macaroni and cheese with real dairy.  His first real Smore around a campfire.  His first cocoa with whipped cream on it at our favorite breakfast place.   His first pasta with cheese in it.  Our family was able to “Go out to ice cream” anywhere and Colin could choose anything he wanted.    It has been an exciting and liberating time for him and our family.

Although we could really eat/cook anything now, it is hard for my brain to get out of the non-dairy routine.   I still tend to cook without a lot of dairy and I forget I can make things now that I’ve avoided for so long.   But really that’s not a terrible thing either.  Dairy can add a lot of fat to our diet so sticking to real foods and less cheese is probably better for us! Also, since Colin isn’t used to the taste of cow milk, he often prefers his old dairy-free alternatives.   He won’t drink straight cow milk, use real butter or eat many cheeses.  He is drinking almond milk right now and still likes the Earth Balance butter alternatives.

Colin is a very picky eater.  I think part of it is being a four year old but also MSPI has made him wary of trying new things.  Right now he is only eating a few foods due to his swallowing issues.  So we’ve gained some ground and lost some ground but we are really happy that his food intolerances have subsided.   (The doctor doesn’t think Colin’s swallowing issue is related to food.  We’ve been unable to positively/negatively affect the swallowing issue with diet, so we don’t think food is to blame.)

So if you’ve read this whole thing I want to tell you not to lose hope.   I didn’t think this day would come, even a year ago.

I plan to continue this blog even though we’ve overcome MPSI.  I was desperate to find resources when Colin was first diagnosed and I hope others will find the story of our journey and lists of foods helpful.     As the food challenges are now changing with whatever is going on with Colin’s throat, I am still busy making foods that make his body happy.  I could call it this Busy Hands Happy Throats, but I’ll just leave it as is  🙂

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3 responses

  1. (I posted this comment on another of your posts but it doesn’t appear to have posted? So I’m trying again here..)

    I am so glad to have found this post. I’m in a bit of a dark place right now, going through this with my 6 month old. I have been milk and egg free since August and that was okay for a while, until she began having blood in her stool again in the beginning of this month.

    I did the chicken/rice/oats/carrots diet for a week before I realized that she was getting much worse, and there was blood in every poopy diaper rather than just sometimes. Over the past couple weeks I switched to potato, turkey, and sunflower butter and she had several VERY normal poops until today, when she had some mucous in them again 😦 hoping the blood stays away at least. I’ve also been introducing her to Elecare over the past couple days and I suspect that may be the issue now (corn based).

    It’s reassuring to read that your son is outgrowing this. I have felt so defeated lately 😕.

    I do have a question – did you find that Colin was okay with foods he tolerated that you ate while you were nursing? For example – if he had no reaction to something like apples through your breastmilk, was he then able to eat puréed apple when he started solids?

    It’s about time to introduce solids for my 6 month old and instead of feeling excited I am terrified. I plan to start with foods she seems okay with that I’m eating while nursing but I’d like to know if my theory is correct.

    • The comments take a while to come through, sorry for the delay. I’m so sorry you are going through this. It is so hard to want to help your child and not know the magic combination that will help their little bodies. Hang in there! This gets better with time, patience and perseverance. Keep an journal of everything and focus on the little successes whenever you find them. To answer your questions, yes, our solid successes were the ones that didn’t bother him through breastmilk. I ate carrots, corn, wheat, chicken, rice. (rice came late) Our pediatrician said to skip fruits and so carrots was our first win. I know there are days where you just feel lost, but know that you are a good mom, working on finding an answer. BioGaia probiotic drops helped us a lot. (It adds another variable though, which I know is hard and time consuming). My old solid posts that might help: Food Successes and Solid Food Successes Happy to chat anytime you need to!

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