Eosinophilic Esophagitis?

pennin35

Hi everyone:  I have lurked on this page every since we found out my 2.5 year old DD has egg, peanut and treenut allergies at the age of 1.  This past winter she had what appeared to be upper respiratory infection after upper respiratory infection, and when she's sick and has a lot of mucus, she tends to throw up, A LOT.  Eventually the words asthma and failure to thrive started getting thrown around.  She hasn't grown height-wise or weight-wise (21 pounds presently) in about a year.  Finally the ped referred her to GI, ENT and endocrinology, ENT says adenoids are 80% blocking and to consider removal, GI says she fits the profile for this EoE condition, essentially that other food allergies are manifesting in her esophagus causing her to throw up.  Just wondered if anyone out there has had experience in this area.  The only way to confirm the diagnosis is endoscopy under anesthesia. The allergist just sent us the results of newest bloodwork and it indicates she's positive for soy, borderline for milk, both of which she eats daily without any apparent allergic response (unless it's happening in her esophagus).  I'm so confused as there are many issues going on here...my husband and I believe she is throwing up due to mucus from being sick and maybe asthma, and since she has been on Qvar, flonase and zyrtec for a few weeks, she hasn't thrown up once.  Thanks to all who read this and thanks in advance for any responses.

aliandchris

Hi! I just replied to a post below regarding EoE but I'll out it here too I don't have a child with EoE but I myself have it. I have severe tree nut allergies and asthma. I was a failure to thrive baby and was always of low weight and height. I wasn't diagnosed with EoE until 9 months ago. I always had trouble swallowing food but thought I took too big of bites. When my daughter was 5 weeks old, in was rushing to finish dinner and a piece of chicken became impacted in my esophagus. 7 hours and 2 emergency departments later and a GI scoped it out. He said it was really irritated and recommended a follow up endoscopy with biopsies. Turns out I have very severe EoE (rare in adults, especially women) and am on week 14 of an elimination diet (it isonly supposed to be 12 weeks but my work schedule is crazy so I haven't been able to have my endoscopy). I have eliminated wheat, egg, soy, dairy, peanut, tree nut, fish and shellfish. A week from Friday they'll scope me to see if everything looks cleared up and then I'll slowly add one food in, followed by an endoscopy, to figure put which one(s) is the problem. The doctor says the elimination diet is hard but is the best method of treatment...but obviously much easier for an adult to do than a kiddo! Good luck and hope everything turns out okay!

pennin35

Thank you aliandchris for your response!  My daughter often scarfs her food if it's something she likes, but there are times she looks physically uncomfortable eating or swallowing.  Often she would throw up during or right after a meal, but sometimes it is well after dinner or after she's been asleep for a few hours.  Did you always have trouble swallowing, no matter what you were eating, or was it just with certain foods/textures/times of illness?  There doesn't seem to be a constant trend of anything with my daughter which makes this very confusing.  We are supposed to recheck with the allergist next week to review blood test results and progress with medications, recheck with GI after the allergist makes her recommendation and ENT in 30 days.  Putting a toddler under anesthesia is something I take lightly and I want to be sure it's the right course of action.  Have you done blood tests with an allergist that show other types of food allergy that you weren't aware of?  I have to wonder, if she was positive for soy and borderline for milk, could they be linked to this EoE condition?

aliandchris

Blood tests for these kids of food allergies can be inaccurate. Both if my kids went under anesthesia for ear tubes and I will say, while it is scary, it's a mild sedative, just like the one you get during an endoscopy. The procedure lasts less than 15 minutes and I was sent home 45 minutes later. I have most difficulty swallowing meat and dry foods, like roasted chickpeas. The issue is, protein, like chicken, never breaks down so they have to scopeit out, whereas bread or something like that will eventually pass.Looking back, I never had a blood test personally, just skin testing for various nuts after a horrible reaction to walnuts. My GI said most studies show the EoE is related to dairy, wheat or both with a smaller percentage soy. I vomited a lot as a child when I was sick with a cold and had a lot of mucous so maybe this was why? I hope you all find a solution soon! It must be awful watching her struggle

Justabean3

With a child that was throwing up often with Celiac, severe asthma and all nuts allergies just do the endo. It was painless for him for the most part and diagnosed his Celiac. We also found out no EoE for now which was a relief.

It will give you peace of mind and seriously didn't even phase him. He was 2 years 10 months when it was done I believe. The hardest part was them putting him to sleep because he was confused but he didn't remember anything and we held his hand going to sleep.

Justabean3

At age 3 (same month as birthday) he was 27 pounds and 35 inches

Now 10 months later he is 31 pounds and just over 37 inches after going GF.

I'm not saying do that but with that procedure we were able to get some relief and answers. He is on a much better track and we have seen improve but. Has not thrown up once!

And btw he was eating pasta daily up until that point. We had no clue really because it was his primary diet.

2000cougar

My son was just through 2 endoscopies this past year to rule out EoE. The reason for the second was because during the first one, they put all of the samples from different locations in the esophagus together. gastro couldn't tell whether the eosinophils in the biopsy were from reflux or EoE. After switching Drs and putting him on prevacid for a 6 months, his endoscopy was clean. He still snores, looks to be in pain while swallowing, and has a chronic stuffy/runny nose. I have celiac (he's negative, but I know he's still young to test +) so our house is mostly gluten free. I won't subject him to GF bread if I don't have to. 

Good luck! I hope you get answers soon!

pennin35

Thank you for all of the responses!  I think the endo is the next step after 6-8 weeks on prevacid.  The allergist had us reduce the Qvar (inhaled steroid) we were giving her from two puffs twice a day to one puff twice a day because my daughter doesn't get how to rinse and spit after she uses it so it's become a swallowed steroid instead of inhaled, which turns out swallowed steroids actually treat EOE.  And they don't want to treat it until they confirm the diagnosis.  And of course while on the Qvar before reducing the doses, she didn't throw up once.  The day after we reduced the Qvar, she started vomiting again.  I agree, just doing it and knowing once and for all if that's what we are dealing with is probably going to give us some peace of mind, but we wanted to make sure we weren't jumping the gun and putting her through a procedure that wasn't necessary. I hadn't considered Celiac but wouldn't that have shown up from the blood tests we had done?  I appreciate you all taking the time to respond!  

law&order

Hi, I have never lurked until my son was diagnosed with EoE today  Hope it's ok that I chime in. 

We had his first endoscopy in December which showed a peptic ulcer and Eo's.  He's been on Prevacid since then. Last week we had his second endoscopy which showed the ulcer was healed but he still has Eo's.  

We're referred to Allergy and Immunology now and will proceed with that testing.  His GI increased his prevacid dose, but since he's been on it for 6+ months with very little change in Eo count, it's looking like allergic EoE. 

Justabean3

pennin35 said:

Thank you for all of the responses!  I think the endo is the next step after 6-8 weeks on prevacid.  The allergist had us reduce the Qvar (inhaled steroid) we were giving her from two puffs twice a day to one puff twice a day because my daughter doesn't get how to rinse and spit after she uses it so it's become a swallowed steroid instead of inhaled, which turns out swallowed steroids actually treat EOE.  And they don't want to treat it until they confirm the diagnosis.  And of course while on the Qvar before reducing the doses, she didn't throw up once.  The day after we reduced the Qvar, she started vomiting again.  I agree, just doing it and knowing once and for all if that's what we are dealing with is probably going to give us some peace of mind, but we wanted to make sure we weren't jumping the gun and putting her through a procedure that wasn't necessary. I hadn't considered Celiac but wouldn't that have shown up from the blood tests we had done?  I appreciate you all taking the time to respond!  

Reference Celiac/ blood work is just a puzzle piece and not a diagnosis. It also doesn't have to be present to have it.

dmurrie

DD does not have EoE, but we wouldn't know for sure if she didn't have the scope. As you said, it's the only way to accurately diagnose EoE... Or rule it out. That being said, they did see evidence of slow gut motility while they were down there, so even though it wasn't the issue we were expecting, it gave us answers and a different approach to her failure to thrive issues.

Some advice for the scope:
DO schedule the scope as early in the morning as you can, since your LO will have to fast, and
do NOT break the fast, as this can distort your findings and also lead to complications during the procedure.
Bring a movie or something for your LO to do after they come out of the procedure and are in the recovery room. Otherwise, wiggly boredom is not very good. She'll either have to drink something or eat a popsicle before they'll let you leave.
Be prepared for a groggy, silly kid, and probably a cuddly couch day when you get home.

pennin35

Since so many of you were so kind to respond to my original inquiry, I thought I would add an update.  We had a second GI opinion this past week and said no need to rush to scoping my daughter.  She has stopped vomiting on prevacid and he said that now it's time to see if she will gain weight while not puking.  So we are calorie counting for a week, then will report back. They also took blood to work up other possible culprits, including celiac and thyroid issues.  Since we've been counting calories, I realized my daughter had 1000 calories by lunch time (we are hardcore pushing high calorie food to see if we can gain weight).  I'm a little freaked out that she was over the 800 he wanted by lunch time and that didn't include the milk or ice cream she had, so that's a lot of calories and no weight gain.  I know ultimately we will probably have to scope her to figure out what is going on, but I appreciated the two month window to see if she'll start packing on the pounds before we go that route.  So far it seems to be a bust, but he said she only needed to gain a half pound two months.  Thank you again for all of the responses!