EE ?'s-lvnbraves and others

grbnik

I have never heard of EE before, but it sounds like there are a few people who have had their LO's diagnosed with it.  I have some ?'s, if you don't mind answering!

First off, DD's eating is horrible, and if you see my post from today, her swallow test bombed.  I had talked to my dad about what a problem eating has been for her, and he told me that my maternal grandmother and his aunt both have 'swallowing issues'.  He couldn't elaborate beyond that.  I also remember when we go out for steak dinners, that he will choke on the steak (some meals, several times) and excuse himself to the restroom to regurgitate.  So, I always thought this was because Dad had one too many beers, but after reading about EE online, it makes me wonder.  So, here are my ?'s:

1) Is EE hereditary?

2)  Do you scope to find out the dx?  Or, do we need to go to an allergist?  And, what is the correlation between allergy and EE/swallowing/eating issues?

3)  Does EE mean that you will need a feeding tube in kids this young with it?  Or, does it depend on severity?

4)  What is all involved in your situation of EE?  What lead up to the diagnosis?  What symptoms did you notice?  Did your GI doc give you the diagnosis?  

5)  Can you grow out of EE?

 

Thanks for any help you can give me in advance!  We don't have anything to go on now, so I am not even sure this is a possible diagnosis, but I want to make sure that I am not missing any signs.

 

JaysonandKristin

My son has a physical birth defect that manifests itself in many of the same ways as EE, so I always pay attention to posts like these.  Here's a link to a post about EE on the Food Allergy board: 

? Eosinophilic Esophagitis 

lvnbraves

I can give you answers based on what I've learned, but I'm not a doctor...although sometimes I think medical school would be easier than all the guess work I do!

1.) There is some preliminary research that shows EoE may have some type of hereditary nature.  However, they aren't sure and to what degree.  I don't have any food issues (as attested to my struggle with weight - oh the irony), my brother did when he was little, and my MIL had allergy issues.  Right now, there is nothing definitive and they aren't even sure how it manifests through the hereditary line at this point.

2.) You'll likely need to go to an allergist first, to do some preliminary testing.  We did a skin test (all negative for top 8), then a blood test (all negative for top 8, but positive for pork) and this is pretty common for EoE patients.  But, I think they prefer to do the less invasive testing first.  We didn't confirm the diagnosis until we had a scope when the feeding tube was placed.

3.) Feeding tube isn't necessarily a given.  If it's caught early and isn't severe, it's likely that your child will begin to eat.  We had to have a feeding tube because he was already have FTT issues due to CF and was starting to show developmental delays.  We didn't find out about EoE until after the tube was placed.  

However, if it's severe and they are allergic to many things, it may happen, and trust me when I say, it isn't the end of the world.

4.) Our situation is complicated because DS has CF, which oftentimes causes digestive issues & reflux.  He was born with meconium ileus, had emergency surgery and so on.  He has struggled with weight his whole life and we never suspected an allergy (mostly because we were given incorrect information about his first formula that was dairy based - we were told it wasn't and I never thought to double check).  So, we weren't following his symptoms for that, but what I can tell you is that when we introduced rice milk (he's on Neocate), within a couple of hours he had a slight diaper rash.  The next day, he started vomiting during one feed.  The following day he was vomiting through 2 meals.  After we eliminated the rice milk, he went back to eating without a problem.  That is our situation, for others, it takes longer for symptoms to present. 

Our allergist gave us the diagnosis.  Our GI was largely out of this process.

5.) Unfortunately, they do not grow out of EoE.

Also, a small side note, in the EoE community, it's referred to as EoE, not EE.  There is something else (which I can't remember now) that is commonly referred to as EE that effects mostly adults.  So, you might get some confusion.  It's still pretty new, but just FYI.

Hope that helps some!!

 

grbnik

Thank you both so much for this information!  I found it VERY helpful!  And, I had no idea that EE wasn't EoE!  It makes sense now, because when I googled EE before, I came up with mostly adult cases, that didn't sound too severe, and it didn't jive with what I was hearing about EoE.  So, next steps- we have a Ped appt to get both kids allergy testing, and then to wait to see if the GI doc will want to scope.  All of this is very scary, but it is good to hear that it isn't the end of the world (like I was thinking before).  I wonder if anyone has done any sort of fundraising, or anything for finding a cure.  Hmmm... may be on my list of things to find out...

 

Thanks again for the info!  I will let everyone know what we find out!  

twoasone1

I haven't been on here much lately, but wanted to chime in here too.  My son has EoE.  I do a lot of fundraising to help find a cure for it.  There are two great organizations that do this.  One is APFED, or American Partnership for Eosinophilic Disorders.  You can find their site at www.apfed.org.  I do fundraising for them because they are the ones that helped me make sense of things when my son was first diagnosed.

There is also an organization that is called CURED.  They do a lot for research as well.  I hope everything turns out well for you all.  

My DH also has EoE, although not as severe as my son.  So, for us at least, it seems to be hereditary.  Cincinnati is doing a lot of research into a genetic link and other things that will someday, lead to a cure or at least better treatment options.

My son also has a feeding tube, but like a pp said, he was already severely FTT and wouldn't even drink his formula when he was diagnosed.  He had been in too much pain for too long and associated eating with that pain.  

Let me know if you have any other questions! 

grbnik

twoasone1:

I haven't been on here much lately, but wanted to chime in here too.  My son has EoE.  I do a lot of fundraising to help find a cure for it.  There are two great organizations that do this.  One is APFED, or American Partnership for Eosinophilic Disorders.  You can find their site at www.apfed.org.  I do fundraising for them because they are the ones that helped me make sense of things when my son was first diagnosed.

There is also an organization that is called CURED.  They do a lot for research as well.  I hope everything turns out well for you all.  

My DH also has EoE, although not as severe as my son.  So, for us at least, it seems to be hereditary.  Cincinnati is doing a lot of research into a genetic link and other things that will someday, lead to a cure or at least better treatment options.

My son also has a feeding tube, but like a pp said, he was already severely FTT and wouldn't even drink his formula when he was diagnosed.  He had been in too much pain for too long and associated eating with that pain.  

Let me know if you have any other questions! 

I would like to know more about your fundraising efforts!  Would you be able to email me?  grbnik at aol dot com

I know that we don't actually have a diagnosis yet, but after talking to my dad and some family members, it sounds like we have it in our family history.  When I talked to my dad today and asked him more about it, he told me that when he was younger he was told to 'eat some bread and push it (the food that was stuck) down' that way.  Um- hello, dad- wish I had known this earlier!  It is so like a father to not think about these things like a mom would!    He told me today that he, his aunt and my mom's mother all had swallowing issues.  So, we may have a double whammy.  It is weird though, because I don't really have any issues!  Thanks for everyone's responses.  I feel like I am clumsily working through this; but I feel like we are getting closer to understanding what is all going on.