Roll with it

This year has been a big one as my little guy started kindergarten and I went back to work outside the home.  It has been a big adjustment for us all!  We’ve had some hurdles here and there but we found our rhythm and everything has gone better than I expected.

It’s been almost a year since my last post so let’s see……

Colin update:  He has done SO well at school.  He has an amazing teacher who has helped us with the big transition to kindergarten! We still don’t have definitive answer for why Colin struggles with food and pain so much.  His ultrasound series and barium swallow came up with nothing.   Doctors keep coming back to eosinophilic esophagitis.  Although his first scope didn’t find evidence of eosinophils, two doctors have now said they think that a future scope will find it.  The other theory is that he is experiencing functional digestive pain along with whatever they’ve yet to diagnose or due to his history of having so many food issues.  We don’t have any new meds or leads for now.  We actually did some therapy to help with pain management techniques.  It does help him a lot, especially at night when his pain is the worst.  We are trying to decide if we should agree to another scope.   Part of that answer may depend on his sister….

Yes, our older one has started showing signs of swallowing issues and digestive pain.  Although its been creeping up slowly over the last few years, it’s really been rearing its head the last 6-8 months.  What we originally thought was just classic acid reflux, hasn’t responded to several different medications and so she’s headed off to her first scope soon.   I’ve had a few moments of “Oh no!  Not you too!” but for the most part we are just taking it in stride.  We’ve been down this road.  My daily prayer is that they will FIND AN ANSWER because not knowing is truly the hardest part.

So on to more fun things…. like Cooking!

We had our kitchen redone!!  This was a plan 12 years in the making and we couldn’t be happier.  No more purple countertops or broken cabinets!  I have a wonderful island that makes working in our kitchen so much easier.  During the renovation I cooked most of our meals in an electric skillet on top of our dryer in the basement.   It was hilarious, sometimes ridiculous and often not what I’d call delicious, but it was worth it!

Safe Foods Update:   Although we don’t strictly avoid soy anymore, we stay away from soy flour.  We also avoid oats, chocolate and dairy.  I’ve had a few new dairy free finds that I’ve really loved and will be sharing them with you this week.  We are on spring break so I’ve been trying out some new recipes and having adventures with my two little goofballs!

If you have any spring foods you are loving, feel free to share below!

 

 

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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  🙂