Thursday, October 22, 2009

What Is Eosinophilic Esophagitis?

Last night we finally got a diagnosis for my son. Eosinophilic Esophagitis! It was a long journey to get here, but I thought I would share with you how we got here!

It first started when Andrew was only two years old. We went to San Diego for a little family get-away at Sea World and San Diego Zoo. We were having a great time and went to a local Mexican Restaurant for Dinner. Shortly after dinner was served all of a sudden Andrew's lips started to grow. It was so scary and I grabbed him and ran to the front of the restaurant. In a panic I asked the front desk people to call 911, but they sent me to the bar....who told me he had a first aid kit. It was so frustrating because the restaurant was hesitating on whether or not to call 911 for me? By this time he was starting to have labored breathing and the rest of his face started to swell. The man at the bar called 911 finally! By the time the ambulance came he was completely blue and not breathing. They took my little two year old into the ambulance, injected him with Epinephrine and started to give him oxygen. This was one of the scariest day's of my life! I felt so helpless and felt like I could not help my baby. After we went to the ER, they told me that he had an allergic reaction. They guessed that it must of been the beans he was eating on his plate. His face remained swollen and deformed for a couple of days and this was the start of our very long journey!

We were sent by the insurance to an allergist who did skin testing on him and told us to avoid all nuts, beans, peas, and soy. The list was not that bad and very manageable. We did exactly what he said, but it was not long until Andrew had another reaction. This time it was only a couple of months later and it was worse. We were at a picnic and he started to get some hives. My husband sent me into the house to get some Benadryl and as I was in my diaper bag he came running in with him not breathing. This time we had the Epi-pen and was able to give it to him right away. It immediately opened up his airway, but it started to wear off before the ambulance came. Once the ambulance came they gave him more Epinephrine. I will never forget the look on my sister in law as she sat on the couch looking annoyed that Andrew had ruined her party. Not even getting up to help.

Andrew was also suffering from chronic hives since his first attack. Nothing seemed to get the hives to go away.

This sparked more questions that the allergist could not give us any answers too. We then saw two more allergist before paying out of pocket to go to UCLA to find out what is going on in his body. The doctor at UCLA began to do a lot of tests and thought his blood worked looked like he might have a small case of Lupus, but he could not confirm it. There was the correlation between his reactions and long days in the sun, but he was not firm on the Lupus diagnosis. He told us that the doctors were experimenting with the drug combination of Singulair & Zyrtec. We then started him on the medication and noticed an improvement and a decrease in his anaphylaxis reactions.
He continued to have the hives reactions on and off and his allergies began to seem manageable for about two years. It was not until last year that he started to have the anaphylaxis reactions again.

It started slow. He began complaining about his eyes. He would rub them and tell me that they felt like there was poison in them. I took him to the eye doctor about four times before he told me that there is nothing wrong with his eyes. Then he started to have swollen eye reactions (like the picture above). Nothing would bring down the reaction other than steroids, and it would take about 3-4 days for the swelling to come down. My pediatrician had told me about a great allergist named Dennis Yoshii. The insurance first sent me to an allergist in San Clemente who just gave me lots of "huhs" and "hums". The minute they are a "huh & hum" doctor I know that we need to leave. The doctor put in another request to Dr. Yoshii and it was approved! I was so excited about the idea of maybe finding a good local allergist.

At out first appointment with Dr. Yoshii he did a series of skin testing on him. The results were devastating! His allergies had gotten worse - not better with age. He was now allergic to almost everything!! Peanuts, All tree nuts, Soy, Corn & (all corn products), beans, peas, rice, strawberries, carrots, eggs and grass. A week later he did another skin test and the results were different. Nothing seemed conclusive. I started to realize that soy & corn are in almost every product! The products made for people with celiac disease all resort to rice flour which he could not eat either.

The Doctor told me to try eliminating all these foods from his diet for three months. If I notice a difference then continue and if I don't then we will talk about re-introduction. Now, Andrew also suffers from ADHD and had been on medication to treat it. The doctor told me that changing his diet might improve the ADHD symptoms and also advised me to start giving him Fish Oil & Flax Meal.

I then started the hardest journey of my life! I had to cook everything for him from scratch! I would tell my friends about it and they would comment, "well I make my food from scratch." But, I would have to tell them are you able to use beef broth from the store, "yes"....well Andrew cannot. Can you give your child crackers, "yes"....well Andrew cannot. Can you buy bread from the story, "yes"....well Andrew cannot. Can you buy yogurt from the store, "yes"....well Andrew cannot. I found that I could not cook with anything from a can or package at all! Everything has Corn products or Soy Products in it! It was shocking!! It was one of the hardest times of my life. I felt so alone and I spent my entire life in the kitchen cooking. I started tearing up grass in the back yard and began growing my own produce for him too. When he would have a pizza party at school I would make him a pizza at home and bring him in a fresh pizza trying to help him feel less abnormal.

After about two months of making everything homemade I began to notice a difference! His ADHD symptoms started to improve drastically and he began to start feeling better. He was complaining less of headaches and stomach aches, although it was still there. I was so pleased with the results and very grateful to Doctor Yoshii for the advice that he gave me.

Then in July we were getting ready to host a foster child from Taiwan for the summer. Andrew went over to his Grandma's house in the morning while I was getting the house cleaned. He had not eaten breakfast yet. I got a call shortly after he went there from my Mom telling me that he was not feeling well. I told her to bring him home. I thought it was weird because he was feeling alright when he left. I don't know why, but I thought I would wait on the porch for her to come home with him. I will never forget the look on her face as she got out of the car screaming...Andrew was not breathing in the car! I ran into the street, grabbed my blue lifeless boy out of the car and ran him into the house. I grabbed his Epi-pen and injected it right into his thigh and began CPR. As I looked up a couple of my neighbors were in my house in tears. They called 911 and the ambulance came out right away.... got him on oxygen and gave him some more epinephrine.

This raised a lot more questions! We had eliminated everything from his diet that he was allergic too. He had not eaten anything that day, so what caused the anaphylaxis reaction? So we went to see Dr. Yoshii who told us that there must be some trigger factor that we are not finding. So he referred us to the GI clinic at Children's Hospital Orange County.

When I went to see them Andrew told them that he is still in a lot of pain in his stomach. The Doctor wanted to put him on lactulose to soften his stool & periactin (an allergy medication & appetite stimulant). She wanted to try him for one month and see if he improves. After a month we went back to see her and yes, there was an improvement but not enough. She then told me that she wanted to do an endoscopy on him. The thought of it frightened me and relatives were telling me not to go through with it. My husband and I talked to the doctor and decided that it was the best for Andrew.

So they admitted him to Children's Hospital. It is an amazing hospital with therapy dogs, Early Childhood educators and a great staff of nurses and doctors.

Daddy was even able to take the day off of work to be with our little guy!

It was so scary to see him when he came out from the endoscopy. Because of his soy allergy they were forced to use a much stronger anesthia medication and it took him almost 2 hours before he woke up.

This is the picture that the doctor gave us from the scope. He said that it looked like he might have Eosiniphilic Esophagitis by the looks of the picture, but the biopsy would be the final determining factor. If you look at the picture in the top right you can see the groves or valley's along the side of the skin before you enter the hole. Those groves are like "burn" marks in the skin from the allergic reactions. The example of Eosiniphilic Esophagitis that the doctor gave me was, "eating an allergic food to a child with EE is like pouring bleach into their bodies." Their bodies react on the inside much different than it does on the outside ~ so skin testing would never be accurate with a child with EE.

Last night it was a week and a half since the endoscopy and they called with the results. The results were 50 found in the lower esophogus and 40 in the middle of his esophagus. Anything over 20 is a high amount. The immediately put him on priolsec and are going to send him to a EE Clinic where we will get more answers and information on how to help Andrew.

Finally some answers....after a long journey!


  1. hugs and prayers for your little guy as you guys work on finding solutions that will help him be healthy and happy.

  2. Wow! We will keep you all in prayer. I have been a nurse for almost 20years and most of my time has been working with kids..I just love taking care of children. I am so glad that you keep on the doctors and advocating for your son. Our son was diagnosed with Seizures and only after I video taped them and emailed it to the doctors. He is doing fine now. Take care and we will be praying for you. @michaelsownmom & @beingmichaelsdaddy

  3. Wow, you've been through so much! Thanks for sharing your story.


  4. What an amazing journey your son has been on. I am so happy that you finally have some answers and can move on. That is wonderful that he is feeling better.

  5. Wow, Shelby, what an intense and frightening ordeal. I'm glad to hear that Andrew has a diagnosis. I can only imagine what this has been like for your family.

    You're in my thoughts and prayers!

  6. Thank you so much everyone for your wonderful kind wishes!! xoxo

  7. I also have a child with EE. He is 3 and has multiple allergies but so far no anaphalylaxis. We visited the Eosinophilic Clinic at Children's in Denver. Dr Furuta is wonderful and Cole is doing better. If I can help you at all, just sent me an e-mail @

  8. I have a 6 yr old that has horrible acid reflux when not on meds. and has been getting hives (I call them welts) on and off for about 1 yr. I finally took her to the doc because they were getting worse and not going away, which they had done in the past.

    Doc wants her to go to an allergist because she might have chronic urticaria which is when your body attacks good cells or she might have eosinophilic espohagitis which then she would have to see a gastro doc.

    Thanks for sharing your story.

  9. My 3 year old son was just diagnosed with EE. We have not dealt with anaphylaxis, he chokes, gags and vomits food. We did allergy testing, the skin tests, first and they showed nothing. It's good to know that's not abnormal for this condition. We are just beginning our journey. I hope you finally get some answers.
    On a side note, NONE of the reflux meds has ever worked for us. My Dr said that right now the treatment is oral steroids like Pulmicort or Prednisone. We are going to see Dr. Irani at MCV in Richmond Virginia in Feb.
    If you have questions feel free to email me:

    Good luck to you!

  10. Thank you for blogging and sharing information about EE. Because of you and others that have shared personal experiences, I have found some answers and have found it therapeutic to research about EE online. I decided to write my own blog about my experiences with my son who has EE. If you want to link it on our site, I can reciprocate too!

  11. Hi Kimmy-
    Thank you for leaving a link to your blog. It is such a new disease and everyone is still learning about it. It is so important that we all share our experiences and find a cure together!

  12. thank you so much for the enlightenment, about 8 months ago i was feeling little pain in the middle of my abdomen and i did no bother to check upon it then continue with my everyday routine.. but i was more concerned about the pain i was having on my back on the lower ribs on the right side then after few months it aggravated the pain in the right side of and the stomach pain was becoming very problematic as well i was experiencing the pain mostly after eating..

    after i consulted a gastroenterologist and had done some test and i was put on 2 weeks of omeprazole for the stomach and essential forte for my liver, then after the cycle was over i consulted back then the assistant doctor added domperidome for Gastointestinal motility and still on those two medicine i was first taking on the night i took domperidome the next day i was having allergic reaction and the next day i was confined on the hospital and i got out after 4 days and after a week i had my endoscopy done and diagnose of LA grade A esophagitis.

    the doctor put me on someprazole (nexium) and i got relieved on the heartburn symptoms but im still having pain in my stomach after eating..

    but when i watch the the copy of my endoscopy i have this feeling that i have Eosiniphilic Esophagitis. but i dont think its same as the picture of your sons endoscopy, i mean no disrespect, but i think the rings on the esophagus of you sons but i thin i have some of them i think so. i dnt know if the doctor might have miss on something or what but just wanted to share this..

    by the way im living in the philippines and still at the present and still suffering the pain on the middle of the abdomen which usual i experience after eating....

  13. How is he doing now? My daughter has been recently diagnosed with EoE. Her symptoms are not severe like your sons, but it has been difficult.

  14. Thank you so much. My daughter suffers from EE and until we switched doctors to a new great allergist they never linked her hives to her EE. In my daughter case her allergy tests never show the same results twice. On day its milk, one day its dogs they just never know. She is on a few new medications and she no longer tells me 50 times a day that she is itchy. She is still regurgitating but we have had no food impactions. I do have a question for other EE mom's, any of your children always tired? My daughter will sit for hours with her blanket and veg out. Also anyone else having poor weight gain?

  15. I am a 30 woman. I have spent the better part of my life sick, in pain, out of breath,chronic hiccups and coughing with exercise that is not asthma. No body could give me answers. Nothing worked and in most cases made it worse. At 19 I discovered I have Hashimoto's disease...just one of the now 5 diagnosis's of autoimmune diseases I have accumulated to date. Two weeks ago I got the results of the biopsies done during an endo that actually was only suppose to be a colonoscopy to check for Chron's and UC.... good news, no chron's and no colitus but what they did find was that my entire esophagus was covered with eosinophils.

    My Dr wanted to put me on Flovent and PPI's but I have 3 big ziplock bags of pills ( including vitamins) that I have had some sort of adverse reaction to. My pharmacist and I have speculated that perhaps I am allergic to the starch component of the drugs which is likely wheat or corn based.

    Im pissed that my dr didn't send me directly to the allergist, especially since I was very clear that I did not want to go the pharmaceutical route. Now I have learned that in children and now in adults they are using the elemental diet to heal the body and then VERY gradually introducing ONE food at a time, to determine which foods are intolerable.

    I want to give it a try. Im sick of being sick and there is a 95% success rate associated with it.. the only problem is that it is expensive and not covered by insurance. But I don't care....I have even come to terms with not eating "food"... If it works, they may never get me to eat again.

    I suggest any one or any parents dealing with EoE have a good look into it.

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