It's been a while since I have talked about Sadie's health but unfortunately, she started this year with health issues again. She was diagnosed very quickly with celiac disease in March 2020, which was a blessing we found out quickly, went gluten free & she has done great since then. Until late last year. She kept griping when she ate that food was getting stuck in her throat & she couldn't swallow. Meanwhile, we kept telling her to slow down, take smaller bites, etc. After a while, it got so bad she would start crying & even had a hard time drinking - that's when I knew it was time to go back to her GI doctor. Just like last time, she had a gut feeling right away, which would be confirmed by another endoscopy & biopsies, so February 2, we headed in early for another procedure:
Thankfully this was her 2nd one so she knew what to expect & she did great. Unfortunately, her doctor found what she expected & she was diagnosed with Eosinophilic Esophagitis, otherwise known as EOE, which is a chronic immune system disease that causes inflammation and scarring in the esophagus. In her case, she was having an allergic reaction to something that was causing white blood cells to build up in her esophagus, so much that it was blocking food & drinks from going down. If you don't want to know the details, skip down, but I try to document everything for my records.
We were told this disease is usually diagnosed in males but is also hereditary, so I don't know where it came from? I had never heard of it before! EOE is diagnosed when there is a presence of 15+ eosinophils (white blood cells) and from her biopsy, she had 68 present, which it should be 0. So what causes this? Allergies. We knew it wasn't seasonal allergies from the air, because that would have impacted the upper quadrant of her esophagus & her inflammation was mostly in the lower quadrant, which she suspected was food related. Unfortunately, your typical allergy testing will not work for this but 90% of the time, her food allergy is one of the top 6 allergies. So, we were given a few choices for treatment.
1. Elimination diet - She would eliminate food groups one at a time from her diet & then have a follow up endoscopy to figure out what the allergy is.
2. Acid reflux medicine - She would be prescribed medicine to be taken twice a day, 15 minutes before breakfast & dinner, then have a follow up endoscopy to see if the medicine worked. From our doctor's perspective, this only worked 50% of the time.
3. Swallow budesonide - This would be a liquid steroid she drank once a day, followed by another endoscopy. This one she said is closer to 70% effective.
4. Dupixent - Weekly injection given once a week, again, followed by another endoscopy. In her practice, the shot was 100% effective with her patients.
We took a few days to think about it, research it & ultimately decided that the elimination diet should be our first course of action. We couldn't just treat the problem without knowing what the problem is? Dairy & gluten are the top 2 allergies & since she had been gluten free for years, obviously it wasn't that, so dairy was our next option. Right before Valentine's Day, 2/12 she officially went dairy & gluten free:
We told her she could wait until after Valentine's but she was so ready to feel better, so instead she enjoyed the weekend! We took her to her favorite ice cream place & we went all out for the super bowl that weekend. This was her very last bite before she went to bed - a Reese's Peanut Butter Cup! That is one of her favorites!
She woke up the next day & went on a strict dairy free/gluten free diet. And it was hard! Going gf wasn't too bad once you got used to it, but both? I'm not just talking about no ice cream or milk, I mean if any item remotely has milk listed as an ingredient on the package, she couldn't have it. For her, she missed cheese, nutella & ranch dressing the most. For me, it was hard changing my recipes to cook for her. In February & March, we traveled a lot so that was even harder. We went to California with her soccer team & thank goodness her hotel was very accommodating for breakfast:
They even had df/gf bread that they toasted in the back for her:
Now dinners on the other hand, was a different story. We had a hard time eating at most restaurants, unless she had a salad. So she ate at Jersey Mike's several times because they had a bread she could have & at least she could have a sandwich. We did go to Disney this trip & they are always accommodating. We had an amazing lunch & even got spoiled at Ghirardelli with a dairy free sundae:
I do a ton of research when we travel & always find the best bakeries & pastries so knew we were safe with most things that were vegan:
At home, I had already started buying & baking/cooking dairy free in some products. In a weird twist of fate, I started having a lactose intolerance last fall so I had already started making a few changes for myself. I know now that God was helping me out so that when we would make this transition with Sadie, it would be easier! Thank goodness a lot of the gf goodies she likes at home are already free to the top 8/9 allergens:
Katz is one of our favorite brands. I keep our freezer stocked with cinnamon rolls, donuts, cupcakes, etc. mostly so I can grab something for her whenever she needs it at school or a party. This is one of those awesome brands that is both! And fun fact, did you know that Hidden Valley has a plant based dairy free ranch dressing? Not as good as the real thing, but good enough she would eat it! Now cheese on the other hand, I never could come around to that. Yuck!
I easily converted my baking & no one has known:
and when I say no one, I mean friends & family outside of this house! Her doctor told us that Dairy Queen had dairy free dilly bars & they are delicious! You can buy them individually or in a 6 pack:
Personally, I loved having someone to eat dairy free with me since I was already doing it! In fact, for Mother's Day we went & got dessert after lunch at Cinnaholic because we can get fruit instead of the cinnamon rolls but all of their icing is vegan:
Her absolute favorite thing in town is Birdcall because they have df/gf chicken nuggets that are actually breaded & they have dedicated fryers where she can have fries or tator tots:
We tried to make it as easy & enjoyable as possible, but who wants to be the kid with food allergies? It's not fun. Everyone has been super understanding, even her band director - on their field trip she had a vegan, gf pizza just for her - bbq chicken with no cheese:
So that was her life & it was hard. She went strictly df & gf for 11 weeks & Then on 4/26, we had another endoscopy:
This time her eosinophils has decreased from 68 to 25, so it meant eliminating dairy was definitely helping but unfortunately, she must have other allergies. Ugh. They don't consider EOE to be treated unless you get the number below 5, so the next step would be continuing with the elimination diet & removing egg & soy. I think I looked at her like she was crazy - dairy, gluten, egg & soy free? What do I feed this child?! We were already working with a nutritionist & thankfully she is still eating healthy & gaining weight, but she is already developmentally behind where she is supposed to be & I didn't want this to set her back more. Plus, she's a kid who wants a normal life! Thankfully her doctor was hesitant to move forward with the elimination diet & suggested we try one of the other treatments. As much as she hates shots, we chose the dupixent injection because it seems to be 100% effective & can maintain a normal diet, except gluten, which she is already used to:
We made this decision on 5/1 but unfortunately insurance denied it. Ugh again. Dupixent was originally designed for other things, mostly eczema & seasonal allergies, but was later approved for the treatment of EOE. Our insurance said the injections were too expensive & we hadn't tried other treatments yet. So we moved forward with Omeprazole, which is basically a treatment for acid reflux. She has taken it twice a day since then, eaten like normal & after feeling so much better the last few months (when she eliminated dairy) she started having problems again. Of course, because the medicine is only partially effective for this disease! It's been frustrating for the past few months & then while we were on vacation in St. Lucia I finally got the call - after 3 denials, our insurance finally approved the injections! Sadie was thrilled! She finished her medicine when we got home from traveling, I was able to schedule home delivery & finally her medicine arrived:
I cannot tell you how excited she was! Technically children 12 & up are supposed to get weekly injections, but because she is delayed growth wise, she can only get them every other week. So they will send us a monthly delivery with 2 shots inside. They are delivered on ice & we have to keep them in the refrigerator, and we have decided to give them on Mondays. I was so excited to read the medical pamphlet that came with it that listed EOE as a symptom:
Dupixent sent a nurse educator to our house this past Monday to help train us on how to do the injection & since Sadie is old enough, she wanted to do it herself:
It was a little scary at first, but she did it & I was so proud of her! So that's her medical update! I know this was a long post & I'm sure most didn't read it, but it's my journal & I know that both of us will read it later. It's been a long few months getting here but we are hopeful the injections will work, she will resume a normal diet (minus gluten) & will be able to eat without any discomfort or pain. And hopefully her body will recover, start absorbing nutrients & working like normal again so maybe she will start growing & catch up with everyone else! We'll see in a couple of months when she goes back in for her next endoscopy & follow up.
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