Wednesday, January 21, 2015

Feeding Harris (Eosinophilic Esophagitis)


I thought that I would give an update on how the new dietary restrictions have gone for Harris and our family.  Back in early December, he had another scope to see if the new restrictions (we took him off dairy and gluten in addition to corn and all nuts) had helped to heal his esophagus and cut down on new irritation and inflammation.  I couldn't believe it when the Dr. called to say that his scope was completely clean.  Zero eosinophils!  We've never had a scope like that and, needless to say, we were thrilled.  Right after Christmas we added corn back into his diet and he will have another scope to see if he's had any reaction to this new addition.  Harris hasn't had corn in almost three years so he was thrilled to have his first bowl of popcorn!


Here's a few notes and thoughts on our journey so far...

*I was completely overwhelmed in the beginning with all of the diet restrictions.  Lunch and snacks particularly flummoxed me.  Taking it one meal at a time is what made it feel the most manageable.  I still sometimes get frustrated with all that he can't have, but our new normal is doable.

*Snacks are the hardest for me and dessert can feel impossible.  Without processed food it often feels like there is nothing to just grab and munch on.  Of course an apple, carrots or a banana are healthy and better options, but the reality is that that doesn't always hit the spot for a 10 year old... or a 42 year old.

*Adding popcorn as a snack has been a huge help and relief.

*Every meal I fix for all of us is gluten/dairy/nut free, but Grace is allowed dairy/gluten for breakfast, snacks, lunches or a drink at dinner.

*Time.  This way of cooking takes time.  From putting together a menu for the week to preparing the food.  Everything seems to take just a little longer to fix and it doesn't make quite as much as traditional recipes.  For instance, I might make dairy/gluten free cookies that I have to make a flour mix for before I even get started.  Then that recipe only makes a dozen cookies that Harris and Grace eat in approximately 5 seconds.

* Some things just are better left behind instead of trying to find replacements.  Gluten free pizza crust?  Yes!  Fake cheese?  No thank you.

*  We have found that we can go out to eat but that we do much better at "nicer" restaurants.  We avoid chains as we found early on that they have all sorts of crazy stuff in their food and often don't actually prepare it.  Our best bets have been when we go to restaurants where a chef is preparing the food from start to finish.  They can almost always make accommodations easily.  However, it adds up!  We really don't eat out much at all.

*I almost always call ahead before we do go out to eat, just to make sure that they can accommodate Harris.  I learned this early on after we went to a restaurant that had 20 million items on their menu but not one that Harris could have.  I believe there were tears from both of us that night!

* It's expensive to cook like this!  For Thanksgiving I bought ingredients to make gluten/dairy free pull apart bread and it cost $62 for all the ingredients.  $62!  I then had the ingredients to make more pull apart bread, but what if it had been terrible?   Or the recipe just didn't work?  I feel very fortunate that we are able to stretch our budget to accommodate our new diet, but I think it speaks to a bigger social/ecomomic issue.  What of those children who have dietary issues whose parents simply cannot afford to feed their family in a similar way?  The same goes for organic foods.  The more I've read the more I want to buy all organic, but there is no denying the cost increase.  It's troubling.

*I've found that for all the effort that goes in to feeding Harris, it's often not just him that enjoys the food.  For instance, Brendan, the children's cousin, loves the pull apart bread spoken about earlier.  He's even asked for leftovers, which makes me happy.  I find that sometimes we all love the "new" version except for Harris.  Of all of us, he's the least adventurous when it comes to food!

*I'm pretty sure that Harris has no idea how much effort, time and thought people around him have put in to making sure he is happily feed.  And I suppose that's how it should be, but there are times where I want to shake him, particularly after he doesn't eat something that was made just for him, and hammer it home just how much effort is being made on his behalf.

*I was worried about our Vermont vacation and food.  However, I called ahead to make sure that dinners would be fine and most lunch spots we found offered gluten free bread.  Hopefully, more and more places will be doing this!

*I also took Harris to a more holistic practitioner that did some tests that looked a little like crazy, witch doctor stuff (this coming from someone who has never veered from the medical mainstream).  She recommended some things to try, which we did faithfully.  Frankly, I figured why not explore all options.  We did these things during the time between his scopes.  It hasn't escaped me that this was the first clean scope he has ever had.  I don't suppose we will ever know if it was the food, the recommendations or a combination of both but it bears mentioning and is definitely food for thought.





3 comments:

  1. Thank you for sharing this! I have been wondering about Harris and how his diet has been going. I am glad to hear he is doing well! Have you seen the new Martha cookbook? I have yet to read it, but it may offer some fun additions to your menu rotation.

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  2. I am so glad he is getting better! It is such a process! I too am shocked sometimes how expensive eating like this is. It doesn't seem right, and these problems are becoming more common. We recently went on vacation and found we could only eat at the nicer restaurants (as you mentioned as well) but our dinner bill was $200 per night at least! Wowsa! It is getting easier to cook though and find simple fixes. I hope he continues to feel better and good for you for looking in to other alternatives!

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  3. My daughter had an anaphylactic reaction the past Fall, and allergy tests were done to hunt down the culprit. When she tested allergic to dairy, meat (yes, weird), wheat, and eggs I was completely overwhelmed and for 2 weeks we struggled with how to do this. We finally got in to see the specialist who advised us not to eliminate all the things she tested positive for, which also through me for a loop. It was a wild ride, but a brief one and I'm still trying to understand it all. I cannot imagine the years you've been doing this or the expense. I'm very happy to hear that Harris is doing better!

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