We finally received the results from our son’s second endoscopy in regards to his eosinophilic count.
The news I was hoping for. Decreased eosinophils. WOO HOO!! Happy dance, happy dance… 🙂
But, we’re not out of the woods yet. Let me go over with you what we’ve done so far and where we’re headed…
June 2012: Our four year old (who is already avoiding dairy, soy, egg, peanut, tree nut, legumes, green pea, and hemp due to food allergies) stops eating for two weeks. The only thing he is able to ingest are protein shakes. GI doctor prescribes antacid (Prevacid) twice daily and schedules endoscopy to biopsy his esophagus.
August 2012: First endoscopy performed to take biopsies of his esophagus. Results show increased eosinophils and he is diagnosed with EoE. GI doctor prescribes steroids (Budesinide) to be swallowed daily with 4 packets of Splenda (yuk).
October 2012: Our baby has a birthday and is now our five year old! Allergist appointment shows four additional foods to avoid via scratch test, banana, carrot, barley, and garlic. Now he will be avoiding dairy, soy, egg, peanut, tree nut, all legumes, green pea, banana, carrot, barley, garlic, and hemp.
November 2012: 2nd biopsy shows decreased eosinophils, less then 10. I request to stop steroids (wish granted) and schedule another endoscopy in January.
December 2012: Hope, pray, cross fingers, wish, be thankful, positive thinking, happy dances, meditate, and anything else you can think of until January… If counts stay low, we keep him off the steroids. If counts rise, we put him back on steroids and discuss avoiding wheat/gluten.
Do you or your child have EoE? I’d love to hear about your story.
What has your journey been like? Have you had 0 eosinophil counts just to have them go back up again? Have you ever been taken off the steroids? What foods have you avoided due to EoE? Please share with us. The more information we have, the better prepared we can be.
-Elizabeth
Bethany says
My almost 5 yr old was diagnosed with EoE when he was 2 1/2. His GI said a normal count was under 15 and Matthew's was over 200. We began avoiding dairy, eggs, soy, peanuts and tree nuts after his skin test showed positive for all those. We also began 3 months of that disturbing steroid therapy. I will never forget that first allergy-free meal I served him and my sweet little boy went on and on about how yummy this food was and thanked me repeatedly for making such yummy food. His little belly noticed an immediate difference. After 3 months we had a repeat endoscopy that showed his levels had come down. Not 0, but less than the first time. After about a year of strict avoidance we redid the rAST test and the allergist said his egg had come down enough to try adding it back into his diet. Bad idea. I tried this multiple times and every time he would have severe belly pain. It seems that no matter how low his official #s are, unless it's 0, it needs to be avoided. So, fast forward another year and he is consistently having the same symptoms as he did at the beginning of our EoE journey. We have a new GI now (who I LOVE)and we are going for our 3rd endoscopy on Friday to see if his levels have gone back up. Depending on the results of that, we may have to look at removing wheat. Good luck on your journey, Elizabeth. I hope Ryan continues to improve.
Elizabeth from EasyBreezyLife says
Hi Bethany, Thank you for sharing your story. I find that I learn more from other Moms then I do from the doctors. Sad, but true.
Your doctor had him on the steroids for three months, retested and then just kept him on the diet with no meds? They didn't retest to check if the diet was working? I just want to make sure I understand correctly. I wonder if it's out of the norm that my son is having 3 scopes in five months??
Just out of curiosity…our allergist has a list of foods they always test for when it comes to EoE…maybe it's worth comparing to what your allergist tested for. Maybe they missed something?? EoE allergy test list: milk, casein, soy, peas, lamb, apple, potato, egg, chicken, beef, peanut, banana, pear, peach, wheat, corn, rice, oat, garlic, sweet potato, string bean, carrot, barley, rye, turkey, pork, tomato, orange, strawberry, and onion.
Good luck and I'll be thinking of you on Friday and please update me on how he does!!!
Bethany says
They wanted to scope him the 3rd time but he was doing so much better and had no symptoms so I requested to not scope since the 2nd one showed we were headed in the right direction. I'm pretty sure my allergist is clueless about EoE. I wanted him to test for turkey (because he began gagging while eating it one night and then started complaining that his throat felt funny) but they told me there is no rAST test for turkey. I'm 99% sure that he has not been tested for all that you mentioned. But the scope this morning looked normal, according to the GI. We'll find out for sure when biopsies come back. Here's hoping! So glad Ryan had a good scope too!
Elizabeth from EasyBreezyLife says
Good to hear the his esophagus looked good. I'll be thinking of you and hoping for equally good biopsy results!!! 🙂
Maria says
I never gave you our full story… I still hesitate because you are in such a postitive place and ours has not been as positive a story. She carries Epi for milk, egg, peanuts and tree nuts and that is where we started. Her annual RAST revealed new elevations in soy, beef, turkey, and I forget what else along with others and the EOE that had long been on our radar and the fact that we were on our third GI finally gave our latest GI the push needed to scope. She was shocked to have to come back to us less than 24 hours later with reports of eosinophils over 75. She was actually contrite because so many times it had been suggested that she should see a psychologist (and did) Since that time, we did scratches and began taking out more and more foods while putting her on medical foods to try and get weight on her and try to eliminate her belly aches and get her to eat. We have had other symptoms, and recently new ones and even needs for another specialist for other issues, but no new scopes because she does not do well with anesthesia. We predominantly trial based on symptoms. She is a pretty open book for me at least. Currently, she eats non melon fruits, vegetables, pork, rice, flax, sorghum flour, hummus, chicken, potato, and tapioca starch. That is where we are and she is still symptomatic. We are having our second scope next week and I am terrified. She is also on swallowed Flovent which she also takes inhaled for asthma. At our first post-scope visit to the GI she tried cutting our Flovent in half because we had gained almost 6lbs and she was doing GREAT! Well, it was a disaster. I remember crying in the bathroom that she would be getting a feeding tube because I couldn't even get her to drink let alone eat. SHe still hasn't fully gotten back to where she was. I can't blame it on that- there is no reason to- I just wonder what happened. She was thriving and failure to thrive had finally not applied to us.
Elizabeth from EasyBreezyLife says
Hi Maria, Please don't ever hesitate to share information! That's how we learn from each other!!!
Has she ever been tested for garlic??? Ryan's allergic to it and it's now on our allergist's list of EoE testing foods. It is becoming a more common allergen and not many allergists test for it. There would definitely be garlic in hummus…along with chick peas. She handles chick peas okay? I know every child is different, Ryan is allergic to peanut, tree nut, soy, green pea, and every legume tested so our allergist had us take out all legumes…which would include chick pea. I can't help but wonder if your daughter tests positive to peanut and tree nut and elevated to soy…is it possible that she has a problem with other legumes as well?? I'm just thinking out loud here…don't mind me. Because food allergies has been out life for five years I can't help but play "detective" when I hear other allergy stories.
I'll be thinking of you next week for your next scope. Please give me an update and hopefully it's a positive one!
Maria says
I hear you on the hummus. I don't think garlic is an issue at all. The hummus she eats infrequently so I don't think it is the cause of her current symptoms, but it is on my radar and we are trying to figure out if it does cause *some* symptoms. I actually think she is fine with regular peas and it is high on my list to trial. I by no means think the list I gave you is actually a true SAFE list. I think it is actually smaller than that, but we are playing a balancing act with her- or at least that is what the GI, allergist, and dietician keep telling me. They don't like her this restricted, I don't like the steroids, but reality is that she will likely have no chance of getting off the steroids before her teen years:(
Oddly, when this all started, her soy RAST was so high they told me to stop giving it to her fearing it was a true allergy even before the EoE Dx, and she had just had a whole cup of Silk yogurt that morning for breakfast- go figure!
Thanks for the positive thoughts!