Staceyshoe Posted September 5, 2012 Share Posted September 5, 2012 Anyone familiar with this disorder? If so, I would love to hear your knowledge/experience with it. Feel free to PM me if you don't want to reply publicly. TIA! Quote Link to comment Share on other sites More sharing options...
Runningmom80 Posted September 5, 2012 Share Posted September 5, 2012 My son was scoped at one point, but does not have it. There is a board specific to EE on kidswithfoodallergies.org if you are looking for moms with experience! Quote Link to comment Share on other sites More sharing options...
Staceyshoe Posted September 6, 2012 Author Share Posted September 6, 2012 Thank you! I'm heading over there now.:) Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted September 6, 2012 Share Posted September 6, 2012 I dont know much but i have a freind (who moved out of town but i'm still on fb with) who's son has it - sometimes its so bad he has to be on prescription formula instead of food for a while - and he's 10. She has extremely limited foods she can cook for him at times. he has other health problems, as well, so I'm never sure exactly which is related to what, though. Quote Link to comment Share on other sites More sharing options...
sparrow Posted September 6, 2012 Share Posted September 6, 2012 I have a close friend with it. She has been in the ER twice due to food getting stuck and her inability to get even water past it :001_huh:. Quote Link to comment Share on other sites More sharing options...
Momma4Boys Posted September 6, 2012 Share Posted September 6, 2012 My sister's son and my good friend's son (both in Ohio) have EE. If you would like to pm me I could get you in contact with either of them - they have dealt with it for years. Quote Link to comment Share on other sites More sharing options...
abdesigns Posted September 21, 2012 Share Posted September 21, 2012 I don't know much about it yet, but I was just diagnosed with this during an Upper Endoscopy last week. Quote Link to comment Share on other sites More sharing options...
LittleIzumi Posted September 21, 2012 Share Posted September 21, 2012 I have a close friend with it. She has been in the ER twice due to food getting stuck and her inability to get even water past it :001_huh:. Hubby has that. Will have the surgery for it next year. Quote Link to comment Share on other sites More sharing options...
rhrice3 Posted September 21, 2012 Share Posted September 21, 2012 Stacy, My 18 yr old ds has had the choking issues for over a year now. My dh, an ER doctor, finally said something last Christmas when he choked at dinner. When we questioned him about it, my ds acted like no big deal - he had become used to having to spit his food back up! UGH! My dh though it was probably scar tissue from acid reflux as a baby/toddler. Well, he came home from summer session and choked at the dinner table again. My dh became angry and said "Look, how often does this happen?" My son said that it was a daily occurrence. My dh made an appt with a gastro guy immediately - they saw him, scoped him, biopsied him, and discovered the EE. Basically, it is a new diagnosis 5-10 yrs, which is an allergic reaction to something. My son was referred to an allergist and we quickly discovered he was allergic to eggs. Now I cook with eggs but he was never a big egg alone eater. Evidently at college he was eating 2 scrambled eggs per day and drinking this protein drink after working out which contained egg protein. That combined with the stress of college, etc really did a whammy on his immune system. When he was scoped, the dr dilated his esophagus (it was so constricted in a few places) and he is off eggs and he takes a steroid puffer once a day. It is weird, instead of inhaling it as an asthmatic, he swallows it. If your child has been diagnosed with this, I would recommend allergy testing. It is probably something simple to figure out, but it will not go away or get better. I am just so thankful it is EE and not something more serious like Crohn's or cancer. Feel free to PM me if you have any other questions - my dh is pretty up on it now. ReneeR Quote Link to comment Share on other sites More sharing options...
Random Posted September 21, 2012 Share Posted September 21, 2012 The website at Cincinnati Children's is really good for information. Also, APFED is good. Do you have specific questions? Quote Link to comment Share on other sites More sharing options...
BlueTaelon Posted September 21, 2012 Share Posted September 21, 2012 You might find this group helpful http://health.groups.yahoo.com/group/eosinophilgastro/ Quote Link to comment Share on other sites More sharing options...
Staceyshoe Posted September 22, 2012 Author Share Posted September 22, 2012 Thank you all. A recent test showed that this is probably something ds has, but we would need more testing to verify. I'm hesitant to do that because he's completely asymptomatic. (High eos count was found during a scope to rule out celiac.) When he was little, I would have given anything to know what was wrong with him. The symptoms EoE make perfect sense with what we were dealing with then--but that was 5 years ago. My inclination is to wait and see whether symptoms resume. Then again, he had a high eos count (41) with no symptoms, so it's probably higher when he does have symptoms . . . One thing that I wish I had asked the dr about was what might have influenced his eos count. His scope was taken during the peak of pollen season, and he has horrible pollen allergies. That makes me wonder if the levels were inflated because of pollen. Then again, he was taking Allegra, and I've read that some people with EoE take Allegra because it brings their eos count down. (Really wishing we had the scope not in the spring, but we had no idea we would find a high eos count!) Is it possible that the sample was unusually high because of the season? That what was found might have been GERD along with a response to pollen allergy? Maybe I need to ask on the Yahoo group and see what they say. I want to do what's best for my kid. Sometimes I just don't know what would be best.:confused: Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted September 22, 2012 Share Posted September 22, 2012 Thank you all. A recent test showed that this is probably something ds has, but we would need more testing to verify. I'm hesitant to do that because he's completely asymptomatic. (High eos count was found during a scope to rule out celiac.) When he was little, I would have given anything to know what was wrong with him. The symptoms EoE make perfect sense with what we were dealing with then--but that was 5 years ago. My inclination is to wait and see whether symptoms resume. Then again, he had a high eos count (41) with no symptoms, so it's probably higher when he does have symptoms . . . One thing that I wish I had asked the dr about was what might have influenced his eos count. His scope was taken during the peak of pollen season, and he has horrible pollen allergies. That makes me wonder if the levels were inflated because of pollen. Then again, he was taking Allegra, and I've read that some people with EoE take Allegra because it brings their eos count down. (Really wishing we had the scope not in the spring, but we had no idea we would find a high eos count!) Is it possible that the sample was unusually high because of the season? That what was found might have been GERD along with a response to pollen allergy? Maybe I need to ask on the Yahoo group and see what they say. I want to do what's best for my kid. Sometimes I just don't know what would be best.:confused: I wish I could help. :grouphug: If you ever find the answer to this question, please let us know. I get awful gi symptoms in the spring when tree pollen is at the highest levels, but I don't test positive for allergies. Quote Link to comment Share on other sites More sharing options...
rafiki Posted September 23, 2012 Share Posted September 23, 2012 nt Quote Link to comment Share on other sites More sharing options...
sassenach Posted September 23, 2012 Share Posted September 23, 2012 My friend's son has it. Here's a link to her blog http://www.nomuckmessages.com/?m=1 . Quote Link to comment Share on other sites More sharing options...
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