tag:blogger.com,1999:blog-1434787495961507027.post2362428263622413923..comments2024-02-05T06:02:01.688-05:00Comments on Learning to Eat Allergy-Free: Things I Learned at APFED EOS Connection 2015 for Patients with EoE and EGID’sColettehttp://www.blogger.com/profile/08246719800332561032noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-1434787495961507027.post-20442962856119958012016-06-13T23:27:14.626-04:002016-06-13T23:27:14.626-04:00thank you Colette! thank you Colette! Anonymoushttps://www.blogger.com/profile/08926416895679262662noreply@blogger.comtag:blogger.com,1999:blog-1434787495961507027.post-83326105384615734732016-06-13T23:20:21.517-04:002016-06-13T23:20:21.517-04:00thank you Colette! i am trying to find some kind o...thank you Colette! i am trying to find some kind of support group here in the rochester ny area. Because my son Milo has multiple severe food allergy, asthma, crohns and eoe i sometimes feel pretty alone with it all. i finally asked the NP if she knows of a good support group and she said they have a fledgling eoe clinic and they may be able to connect me with some other kids/families like Milo. he has had a lot of trouble after a promising start with the gtube feedings but we keep adjusting the rate and its getting better. I was thinking a support group for parents of chronically ill kids. There are times it feels so never ending, and though i was in a kind of denial for years this past year since the eoe diagnosis has been kind of an acceptance of reality year for me- like facing the fact that these illnesses are all chronic and he will have medical issues probably his whole life. that is what breaks my heart- i feel like he is such a bright light and i just hate the idea of him suffering and being limited in what he can do. Its hard to balance the need for know;edge and research with the need to live day to day. Just the "severe aggressive" form of crohns (his first GI doc's words) is pretty scary in terms of what he may face down the line. <br /><br />Anonymoushttps://www.blogger.com/profile/08926416895679262662noreply@blogger.comtag:blogger.com,1999:blog-1434787495961507027.post-1901218414358869172016-04-27T07:12:00.903-04:002016-04-27T07:12:00.903-04:00Lisa, I am so happy to hear that you have a clear ...Lisa, I am so happy to hear that you have a clear diagnosis. Sometimes, getting that answer is the hardest part! Best of luck!Colettehttps://www.blogger.com/profile/08246719800332561032noreply@blogger.comtag:blogger.com,1999:blog-1434787495961507027.post-32333921615474596682016-04-27T01:08:24.480-04:002016-04-27T01:08:24.480-04:00my son was diagnosed with eoe last year at age 11....my son was diagnosed with eoe last year at age 11. He has had an allergen free diet since infancy with total avoidance of milk, egg, wheat, soy, chick pea, beef, and all nuts, and shellfish. He has asthma and was diagnosed with severe crohns disaese at age 7. The thing that struck me immediately upon researching eoe was that one of the first treatments is an allergen free diet. I thought, hmm, hes already been doing that his whole life. Which means the few foods he would and could eat must be causing a reaction along with perhaps airborne allergens. As it turns out he has the PPI-responsive subtype of eoe. good thing i got that expensive, out of state second opinion or wed still be making him swollow steroids which may not have even been effective. he now has a gtube and is doing so much better. still dont know what the future holds in terms of food challenges. But it is a relief to know that his food aversion was real, had a medical cause, and it was not a failure on my part- I just wish we knew about the eoe sooner it explains so much. Lisa in NY<br />Anonymoushttps://www.blogger.com/profile/08926416895679262662noreply@blogger.comtag:blogger.com,1999:blog-1434787495961507027.post-54023899814766292762015-07-15T11:01:04.708-04:002015-07-15T11:01:04.708-04:00We definitely found the airborne allergen sensitiv...We definitely found the airborne allergen sensitivity to be very high with EoE (seasonal, food, etc.), but didn't fall in the stats - girl, west coast.Alisahttps://www.blogger.com/profile/01227274814082080028noreply@blogger.com