Two Story Cottage

Reid Health Update (& Results)

Dear Friends,

I thought it was high time for a Reid health update.  If you remember, he was diagnosed with an autoimmune disease called Eosinophilic Esophagitis in May. Basically, his esophagus is allergic to many food proteins, which when ingested, causes vomiting and makes eating painful.  After extensive allergy testing, we discovered that he is sensitive to dairy, egg, beef, chicken, soy, corn, oat, tree nuts, and white potato.

It was a big whoa to say the least and our lifestyle changed overnight.

Although it has been hard, we have honestly adjusted to Reid’s crazy new diet.  He can eat turkey, pork, sweet potato, fruits and vegetables.  I shared some of our go-to recipes here.  The fact that he is feeling SO much better makes the diet easier to maintain.  We are seeing a difference in everything from energy level to motor skills.  The vomiting stopped weeks ago but the further we go on the elimination diet, the better he seems overall.

happy_healthy_reid

We can still picnic no matter the dietary restrictions.

Last week, Reid had an endoscopy to check his progress as he has been on the new diet for about ten weeks.   We had our fingers crossed for a good biopsy but did not find out results until Wednesday.

While his esophagus is still healing, the eosinophils (white blood cells) that are not supposed to be there have decreased dramatically.  Previously he had between 50 & 60 white blood cells hanging out in his esophagus which was making him very sick and sucking all of his energy. He now has NINE eosinophils in the esophagus. With a number less than TEN, he is considered in remission.

Now what?

This is far better news that we could have imagined. Usually it takes a couple of rounds of allergy testing to pinpoint all of the culprits.  For now, we stick with the current crazy diet and enjoy our healthy boy.

After Christmas, we will start the process of food trials which is where we can see what food from his allergic list that he might possibly be able to tolerate.  I’m not quite ready for that, especially now that he is feeling so much better.

This was a September miracle for us and I plan on enjoying the next couple of months before we shift things once again.   I’m learning things daily about food and allergies and ingredients.  Is there an honorary degree for label -reading?  If so, I might qualify.

We are used to packing Reid’s food for everything, but it is a wee bit harder now that we are out of the summer bubble.  Preschool has been a little challenging with class parties and snack time. I have to provide everything he eats and the teachers understand the situation, but just yesterday we had a very close call with a substitute teacher in the classroom.  Luckily, Reid told the teacher he wasn’t allowed to eat the snack she had given him.  I am so thankful that he is figuring all of this out without us really explaining it. Because he can’t have most everything, it is easier to tell him what he CAN have. I think the fact that he feels so much better helps him resist the yummy things he cannot eat. Two months ago, he would have jumped off a cliff for a goldfish cracker or dug one out of a trash can. Yesterday, he said, “Yeah, I can’t eat this.” Church is equally hard because of rotating volunteers – I’ve decided I need to put a giant piece of tape on the front of his shirt that says,”do not feed under any circumstances”.   People will think he is a zoo animal, but what can you do when the world is determined to give your child cheese cracker snacks?

I’m feeling very positive after our excellent scope. I try not to think too far into the future because it will be a long road with possibly years of food trials; however, this is a pretty new disease, so who really knows?

I was a little sad to miss out on “Talk Like a Pirate Day” at Krispy Kreme – I’m a sucker for free doughnuts and a fun reason to celebrate. On the flip side, we have discovered that Reid can eat sorbet at Sweet Frog which is a blessing. It is nice to have one place to go for a special outing.

October brings Halloween which is another new challenge.

Thanks for your well wishes everyone!

-Erin

 

Comments

  1. so glad he is doing so much better.

  2. Hi Erin,
    My husband has this also, his numbers (at its highest) were at 90. Cooking has been quite a challenge, as you said. Thankfully we all adjust! When he is out of town on business, we eat all the foods we can’t when he’s home, lol!!!

    So glad to hear Reid is doing so much better:)

  3. Our 7-year is a Type 1 Diabetic (and we have celiac in our family, too — lucky us). We get his medical alert bracelets at Lauren’s Hope, and they have some cute allergy-related ones for kids, too. It might help — or at least generate conversations and interests when around substitutes and strangers. It has helped us so much.

    • That is a REALLY good idea. Thanks, Suzanne!!! My friend’s son is Type 1 and I know it is a 24/7 job keeping tabs on his health- wishing you the best!

  4. I’m so happy that Reid is doing so much better. What a relief for you to finally know what is wrong so that you can avoid the problem foods and see that the benefits of eliminating those foods! I have a ton of food and spice allergies so there are only certain restaurants I can eat at and only certain foods and it is hard to go to someone’s house for supper (my throat closes up and I spend a night in the hospital). I totally understand the challenges and how important it is to have some go to snacks and meals. Hopefully you’ll figure a few more out in the new year. The limitations such sometimes, but it is so worth it when you see results. I’m sure it’s also a relief that Reid is getting to know what he can’t eat and is refusing those foods. You still have to be vigilant, but it doesn’t have to consume you’re every thought because he is monitoring his food intake himself. What a smart young man! I hope it gets easier as you go along and hopefully he will be able to eventually eat some of the currently banned foods. Hope Reid feels better and better as the diet progresses.

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