EOE frustration........!!!! — The Bump
Food Allergy

EOE frustration........!!!!

DS was diagnosed in Dec of 2011 after months of unexplained vomitting and diarrhea.  We were told to go on the 6 food elimination diet (wheat, milk, soy, nuts, shellfish and egg whites.)  We followed this diet very carefully only to be disappointed with rising #s at the following scope in Feb.  The GI put DS on the step 2 diet & told me to find a nutritionist.  I did, she ran extensive allergy testing, and created this insane diet based on what he was not allergic to.  There were very few foods on this diet, but we did the best we could.  I made up recipes and thought we were doing great.

Next scope was last week.  Today was the followup, where we learned that he gained 3 lbs and grew 2.5 inches since Feb.  Promising, right?  WRONG!  The number is now up to 150 eosiniphils per whatever size the sample is, from 50 at the last scope.  I was devastated!!!!!!

GI wants to put him on swallowed pulmicort (budesinode- sp???) and go back to the 6 food elimination diet.  Ok fine.  I'm game.  So he said start new diet today.  I gave DS corn pasta w/ meat sauce for dinner and what do you think happened..... he has hives now.  Out comes the Benadryl.  

I'm seriously on the verge of tears.  IDK what to do next.  I just want to curl up in my bed and cry!!!!!!!  THis is so unfair to him!! 

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Re: EOE frustration........!!!!

  • Oh my gosh- I was so hoping you would hear good news!  I have been thinking about you during this time; I know how hard you have been working to make this better.  You can only do so much- and you really have researched all you can.  You aren't sitting back and brushing this off, you have done so much to help DS.  I am sure this is a huge blow- but I am sure that things will be looking up.  You are so creative with your recipes- I am sure that this will inspire some good new ones.  Wish it was better news.  HUGS!!!!!!
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  • Thank you.

    Yesterday I was on the verge of tears, today I am in shock.  How could I have been so mislead?!  I did SOOOO much homework.....

    We have to pray that the swallowed pulmicort is the miracle we are seeking.  If not, the next step is elemental diet, which I won't even discuss.

    Ughhhhh 

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  • Hi, I don't typically post, but wanted to chime in and say I feel your pain!  My 2 yr old son is going through a similar situation with EOE, where we keep cutting things out, then we see some a little improvement, then he starts vomiting again.  This is such a frustrating disease!! I feel like I could play by the rules if only I knew what the rules were!  Meal planning is completely anxiety provoking, as we are still trying to figure out his trigger foods.  We also had the allergy workup, but the results weren't very helpful.  What are the docs telling you about the pulmicort?  Does your son still have to cut out the top 6 (top 8?) even if he's taking the pulmicort?  Good luck to you!!!  I hope things get better soon!!
  • What about Neocate or one of the amino acid bases to help put weight on while you are going through this. Have you looked into a sugar processing issue? HFI, sucrose issues or table sugar intolerance?
  • This is what makes it even more mysterious to us... he IS putting on weight, growing, developing normally.  He had NO signs/symptoms of EOE before diagnosis other than unexplained & quite frequent vomitting & diarrhea.  He met every milestone early.  It makes no sense whatsoever!!!!

    We did try dropping the top 6 and adding in EleCare after his first scope, but he refused to drink the stuff.  (Have you tried it?  It's DISGUSTING.  You can't take a kid from eating/drinking regular foods to drinking that nasty stuff.  Yuckkkkk.  I imagine that Neocae tastes the same.  He is taking an amino acid supplement though.

    We are starting the pulmicort today.  (The pharmacy messed up on mailing it to me, so we are going to get it when they open in a little bit.)  Doc said to keep the top 6 out of the diet for now and we take it from there.  It would be too much to go to a completely regular diet for the next 8 weeks, and then have to start pulling foods.  I think that would be mentally damaging to him.  At least now he can eat fruits, veggies, etc.  

    When we had the allergy workup, it was a disaster.  We tested or over 70 foods based on the past experiences of the nutritionist and 60 popped up as positive.  This poor kid was eating zucchini, quinoa, hemp milk and turkey just about every day.  (PS- Because of all of this, I HATEEEEEE zucchini!!!!!)   No apples, bananas, potatoes, onions, garlic, rice, corn... you name it, it popped up.  The GI dr said to ignore the testing and following his plans.  We will see if it works.

    I have said the same thing.... just tell me the rules & I will be more than happy to play by them.  But I can't handle this mystery rule here that nobody seems to know about!  The GI said some people NEVER figure out the mystery and the kid just outgrows it.... I pray every day that this happens to DS.....

    Freaking EOE!!!!  This is nuts already!!! 

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  • Try mixing the plain with the vanilla and putting it into a closed top sippie straw cup. Our daughter takes it wonderfully with that!
  • Do you know anything about the benefits of a rotation diet? Have you ever heard about Leaky Gut Syndrome? I am just sort of google name dropping based on my own experience for the last few months. I don't know where you are but there ARE tests for leaky gut syndrome. It is a lactrolose test....basically they consume a sugar based substance and they test the urine and the breath for remnants of the undigestable substance versus the usable ones.

     

  • The rotation diet is what we tried with him since March, and his numbers went from 50 to 150!  We followed the plans to the T!!!!!

    Is "Leaky Gut Syndrome" the official name?  Would I talk to the GI doctor about this or the allergist? 

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  • OP, Any chance you would be willing to PM me?  I feel like our kids have lots of similarities with their EoE symptoms, and I'd love to hear more about what led to your diagnosis, what you've tried, etc.  my email is trace78 at aol dot com  hope to hear from you :)
  • image LovinTim912:

    This is what makes it even more mysterious to us... he IS putting on weight, growing, developing normally.  He had NO signs/symptoms of EOE before diagnosis other than unexplained & quite frequent vomitting & diarrhea.  He met every milestone early.  It makes no sense whatsoever!!!!

    We did try dropping the top 6 and adding in EleCare after his first scope, but he refused to drink the stuff.  (Have you tried it?  It's DISGUSTING.  You can't take a kid from eating/drinking regular foods to drinking that nasty stuff.  Yuckkkkk.  I imagine that Neocae tastes the same.  He is taking an amino acid supplement though.

    We are starting the pulmicort today.  (The pharmacy messed up on mailing it to me, so we are going to get it when they open in a little bit.)  Doc said to keep the top 6 out of the diet for now and we take it from there.  It would be too much to go to a completely regular diet for the next 8 weeks, and then have to start pulling foods.  I think that would be mentally damaging to him.  At least now he can eat fruits, veggies, etc.  

    When we had the allergy workup, it was a disaster.  We tested or over 70 foods based on the past experiences of the nutritionist and 60 popped up as positive.  This poor kid was eating zucchini, quinoa, hemp milk and turkey just about every day.  (PS- Because of all of this, I HATEEEEEE zucchini!!!!!)   No apples, bananas, potatoes, onions, garlic, rice, corn... you name it, it popped up.  The GI dr said to ignore the testing and following his plans.  We will see if it works.

    I have said the same thing.... just tell me the rules & I will be more than happy to play by them.  But I can't handle this mystery rule here that nobody seems to know about!  The GI said some people NEVER figure out the mystery and the kid just outgrows it.... I pray every day that this happens to DS.....

    Freaking EOE!!!!  This is nuts already!!! 

    I just want to cry when reading this.  I have no advice the share other than I will keep your son in my prayers.  I 'm just so sorry.  I'm also curious how you came to the dx of EoE since he never really had any of the classic symptoms.  Gosh - I'm just praying for you and yours.  Keep us posted.

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  • I feel your pain as well.  My three year old has a severe case of EoE.  We just finally got him to be able to eat 6 foods.  

    You probably already know this, but the EGID clinic at Cincinnati just put out a study they finished stating that EoE is actually not an allergy type disease.  It is an autoimmune disease.  Meaning, all the allergy testing in the world (and we have had a lot as well) is not going to help to figure out what foods are safe food for people with an EGID.  

    There are also a lot of support groups on Facebook, like the Eosinophilic Family Support group, that are very helpful and a great place to get advice from those that have been dealing with this for a long time.  It is also a great place to vent.  I just thought I would share in case you wanted to be a part of our support community, there are some great people on there.

    Good luck, and I hope you can figure this all out soon.  Although with EoE, I am not sure that it is possible...ugh! 

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  • The GI doctor has said that the allergy testing is useless in terms of this disease.  I didn't know there was a study released though.  I will check this out.  THank you. 

    image twoasone1:

    I feel your pain as well.  My three year old has a severe case of EoE.  We just finally got him to be able to eat 6 foods.  

    You probably already know this, but the EGID clinic at Cincinnati just put out a study they finished stating that EoE is actually not an allergy type disease.  It is an autoimmune disease.  Meaning, all the allergy testing in the world (and we have had a lot as well) is not going to help to figure out what foods are safe food for people with an EGID.  

    There are also a lot of support groups on Facebook, like the Eosinophilic Family Support group, that are very helpful and a great place to get advice from those that have been dealing with this for a long time.  It is also a great place to vent.  I just thought I would share in case you wanted to be a part of our support community, there are some great people on there.

    Good luck, and I hope you can figure this all out soon.  Although with EoE, I am not sure that it is possible...ugh! 

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  • It was just constant vomitting/diarrhea.  Our pedi said that maybe he was choking on his food, maybe he was not drinking enough, etc.  I felt that something else was wrong so I went behind his back and went to the GI.  GI said he couldn't tell what was going on without a scope.  I was reluctant but agreed that it was the only way and that's when we heard about EOE.  Our lives have never been the same!! 

    image NiniJ55:
    image LovinTim912:

    This is what makes it even more mysterious to us... he IS putting on weight, growing, developing normally.  He had NO signs/symptoms of EOE before diagnosis other than unexplained & quite frequent vomitting & diarrhea.  He met every milestone early.  It makes no sense whatsoever!!!!

    We did try dropping the top 6 and adding in EleCare after his first scope, but he refused to drink the stuff.  (Have you tried it?  It's DISGUSTING.  You can't take a kid from eating/drinking regular foods to drinking that nasty stuff.  Yuckkkkk.  I imagine that Neocae tastes the same.  He is taking an amino acid supplement though.

    We are starting the pulmicort today.  (The pharmacy messed up on mailing it to me, so we are going to get it when they open in a little bit.)  Doc said to keep the top 6 out of the diet for now and we take it from there.  It would be too much to go to a completely regular diet for the next 8 weeks, and then have to start pulling foods.  I think that would be mentally damaging to him.  At least now he can eat fruits, veggies, etc.  

    When we had the allergy workup, it was a disaster.  We tested or over 70 foods based on the past experiences of the nutritionist and 60 popped up as positive.  This poor kid was eating zucchini, quinoa, hemp milk and turkey just about every day.  (PS- Because of all of this, I HATEEEEEE zucchini!!!!!)   No apples, bananas, potatoes, onions, garlic, rice, corn... you name it, it popped up.  The GI dr said to ignore the testing and following his plans.  We will see if it works.

    I have said the same thing.... just tell me the rules & I will be more than happy to play by them.  But I can't handle this mystery rule here that nobody seems to know about!  The GI said some people NEVER figure out the mystery and the kid just outgrows it.... I pray every day that this happens to DS.....

    Freaking EOE!!!!  This is nuts already!!! 

    I just want to cry when reading this.  I have no advice the share other than I will keep your son in my prayers.  I 'm just so sorry.  I'm also curious how you came to the dx of EoE since he never really had any of the classic symptoms.  Gosh - I'm just praying for you and yours.  Keep us posted.

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