Eosinophilic Esophagitis (EOE or EE) is a condition that affects the esophagus.
Basically certin foods cause a reaction the esophagus. These symptoms can include: Pain when swallowing, heartburn, vomiting, poor weight gain, refusing to eat, and even food becoming lodged in esophagus when eating.
August 2016 my 12 year old son came home from a day of hanging out with a friend and swimming and started complaining his chest hurt. I assumed he has pulled a muscle swimming so I had him take a warm bath with some epsom salt and gave him some Tylenol,
The next morning he was still in pain and as soon as he ate he was throwing up. This concerned me so I called his pediatrician. We went in and Dr checked him over and said oh he’s ok just rest and he will feel better. The next day he was ok just still complaining about “chest pain” on and off.
About a week later we were out to dinner and he had taken like 3 bites of his burger and said mom I don’t feel so well, him and I went outside and he got super pale and was throwing up, within a few seconds of throwing up he was doubled over screaming in pain. We ended up taking him to ER by ambulance. ER doctors were stumped, and said its heart burn, gave him some Mylanta and sent us home. This continued for about 3 weeks some days he was fine the next screaming in pain, I took him back to his peds DR, they did several tests on him even an ultrasound to make sure it wasnt his gallbladder nothing they could find. His peds Dr referred us to UW-AFCH in Madison.
We met with her on a Monday at the beginning of October. The Pediatric GI Dr we met with said this sounds like EOE to me(just hearing the symptoms), her recommendation was a GI Scope that week. So back to Madison we went that Wednesday. She came in after the scope and was like WELL I was right it is EOE. I sat there like what the heck is EOE, She explained it was a esophagus condition almost like an allergy. So she started him on Prilosec 20mg daily and we did a repeat scope 4 weeks later. Prilosec wasnt helping(it helped with pain and such but not the esophagus). After the 2nd scope she informed us that we needed to start the Elimination Diet(which is removing foods that are on the Top 6 allergy causing foods). We had to remove 4, Dairy, Eggs, Wheat and Soy. And increased Prilosec to 40mg daily.
We met with nutritionist in late November, talk about exhausting, it was so much information at once. Thankfully she was very helpful and sent me home with so much information to read over. I did ALOT of research on foods, stores that sold it and even spent an entire night emailing companies to see what they offered for “safe” foods. I was beyond shocked with the response from companies. I had several respond with lists of safe foods and even several that said we will send you coupons to get you started. Talk about thankful I was like OMG when I seen the price of bread(even at Aldi Gluten Free bread is $3.99 a loaf and these loaves are NOT your normal 16-20oz loaves!)
Yesterday we went back for his 3rd GI scope. I decided to write about our day and include some pictures of the morning before the scope(silly pics of him and I just to keep him relaxed) I will also include GI scope pics please if you are easily grossed out dont scroll to the bottom of this post and look.
Today is Brax’s GI scope. And of course we had to be here at 730am(super early wake up to be here by 730….he’s hungry and cranky) and mama needs more COFFEE!!!! But on a plus note we made it on time 🙂
Madison drives making this mama a nervous mess, I have driven in Chicago and Indianapolis and I would still take that over Madison any day. I’m not sure if it’s all the college kids walking and riding bikes but whatever it is we made it on time!!
8:25am- He’s gotten prepped and IV is started. We are currently just hanging out and watching cartoons. I’m sitting here writing and chatting with him, He’s into this cartoon so he’s like mom just write I like this show.
His procedure is scheduled for 9:20 so we are waiting for them to come in and get him to go back. The hardest part of these procedures is walking him back to procedure room and holding his hand and kissing his head until he’s asleep. (I’m not even going to pretend I don’t cry every time).
9:25 – Walked him back to procedure room. He had sleepy meds and was telling me how much he loved me and thank you for staying with him. Every one in the room was like OMG he’s so sweet and you sure are lucky . (They have NO idea how lucky I am to be this boys mama. Even on days I swear he has male PMS… he’s still sweet). He asked me for another kiss and said I love you mama and then asleep. Nurse walked me back to room so now I sit here and wait…. this part SUCKS, Trying to not think too much I’m writing and chatting with my mom on messenger(thank god for WIFI at the hospital). He has an amazing Dr, and the staff here are all so kind. I’m hoping for good news, he’s gaining weight and growing he is officially 5′ tall! (yikes 3 more inches and he is as tall as his mama…..) That has to be a good sign that hes doing better, hes gaining weight and growing and not complaining.
9:48- Dr just came in, the results aren’t better. She is bringing back the pictures from scope to show me. She said inflammation isnt better and looks bad. This means another Medication(inhaled steroid) and even more strict on the diet.
NOT the news I was hoping for. I’m still waiting to go back to recovery so I can sit with him until he is awake enough to come back to this room, This part sucks too waiting, I just wanna go back and hold his hand.
1020– FINALLY I can go back to recovery room. While I was back there, he woke up enough to ask the nurse where did his DR and all those other people go. She explained where he was and that they were in other rooms, he said well shoot I wanted to tell them all Thank you!!
1045- We are back in his room now. Hes still asleep so they are just letting him sleep and monitoring him for a while. We should be able to head home around noonish. Once hes awake and drinks something.
1115- Well he’s awake and feeling good. Smiling and making his nurse laugh. I think I’ve heard hes so funny or hes so sweet from everyone that has seen him today. We are going to get headed home soon. YAY! He has drunk a glass of water and asked me to go find him something better than water! LOL yep Braxy is back the sarcastic he is my CHILD moments!!!
11:37- We are outta here! Praying for safe travels back and now this kid wants to go to Wal-Mart to get bread. And apparently now he’s really hungry if he wants that bread since any other time he says its disgusting mom!
The rest of the day was pretty quiet, he didn’t sleep much but laid down and rested most of the day. All in all it was a pretty good day. I am exhausted definitely bedtime soon for me.
Today he woke up with a horrible headache and throwing up. Not a good morning, Dr is sending some anti- nausea meds in for him and he’s sleeping now. This isn’t the first time he’s been sick like this after a scope. 1st time it was as soon as he woke up and then the 2nd was the next day as well. Just going to let him rest today and hope he’s back to himself tomorrow,
EOE is definitely a tricky thing. I honestly can say if it wasnt for his amazing Dr and the staff at AFCH I would still be lost. Every day is different but thankfully, we are only eliminating 4 foods. Some kids have it so much worse.
If you would like more info on EOE please check this website out: http://EOEHome.org
WARNING- Images Below maybe Graphic
Below are the scope pics. They show the rings in esophagus and the swelling in different sections of his esophagus.
I will continue to update on his progress with new med and diet. We are scheduled to go back this summer for another scope to see how its working. Please send a prayer that this med helps!!!