Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 HI, We are very familiar with eosinophilic disease, as too many eosinophils in 4 organs is the heart of my daughter's autoimmune disease. We saw the group in Cincinnati that specializes in the GI disease for 2 years. They had said if the eosinophils are lower in the GI tract than the esophagus, it is likely an autoimmune response, that will not usually respond to the more allergic treatments, such as food removals, or allergy meds. They have not found singulair to be as effective as they hoped, and singulair is tied to a serious disease called Churg-Strauss. For disease in the colon they usually have treat with a topical steroid called bechlomethasone, or Entocort. You do not absorb this steroid as you would prednisone, you only absorb about 30% of the dose systemically, therefore you don't have as many side effects. The drs in CIncinnati told me that reactions in the colon they do not think are from food allergy. Mnay of the kids they treat have as your son with their esophagus and either the colon or stomach. In these cases they say it is a mixed reaction, of allergy and autoimmune, so food removal of allergens and a drug to treat the colon are usually what they recommend. I don't want to throw too much at you, or tell you to be questioning your dr, but this is a fairly rare disease that is very frequently not diagnosed or treated correctly. I hope singulair alone will do wonders, but if you see it not helping you may wnat to do a little research, and have your dr. The site for the American Partnership for Eosinophilic Disorders has a great site about the common tests and treatments that is very informative. It is www.apfed.org. Hope your son is feeling better soon. -- In , " megoonie99 " <megoonie99@...> wrote: > > Well, we got the results of 's biopsies 2 days earlier than I had > anticipated! He had high concentrations of eosinophils in his > esophagus and colon. Hopefully this is the reason for his pain. The > dr. bumped him up to 10mg singulair (he's been on 5mg for 4 years) and > I need to call in 2 weeks to update them on how he is or sooner if > there are problems. > > I could kick myself for this one---in August at the pulmo appt., the > dr. talked me out of food allergy testing (which I requested, so I had > them off their allergy meds for the week--what a DRAG--we were ALL > miserable that week!). But when we saw the GI later in the month, I > said what happened, and he was surprised that the pulmo said that > because 's tests were 4 years old. BUT, the GI did say that he > can order the RAST tests if the need ever comes up. So, do we now > need to do RAST testing with him to see if he is any more allergic to > the foods and/or other things he was before and any new ones? As a > baby he was lactose intolerant, but seemed to get over that .... I > guess along with every answer comes even more questions. > > Thanks for putting up with me! > > Have a great day! > Meg > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Thank you, . I appreciate the info. I think it is still sinking in, and from what i am reading, it is kinda rare. That kind of surprises me because they picked up on it so quickly, to me (granted, he has been complaining of the lower abdomenal pain for almost 9 yrs and he just turned 11--once I got someone to listen to me, then it was quick to find). I read something that some dr's at the Cleveland Clinic children's hosp. had done. My oldest goes to the Clinic for his growth hormone def. The website you mentioned, i had found earlier today. It had some good info!! Anything and everything else you can tell me about this would be greatly appreciated! I don't know what to think at this point. He has been on singulair for his asthma/allergies for 4 years. I read where the jury is out on the effectiveness of singulair for treatment. I really like this GI, and that they called so fast to get his dose increased impresses me. I feel like this guy is on top of things, at least right now. He was the only one who took this all seriously from the first visit. I just got pissed at the first GI and refused to go back and see him. In August, the good GI asked if eosinophils had been checked. I was clueless as to what that meant. I still am basically clueless, but I am reading, reading, reading!!! Thanks! Meg > > > > Well, we got the results of 's biopsies 2 days earlier than I > had > > anticipated! He had high concentrations of eosinophils in his > > esophagus and colon. Hopefully this is the reason for his pain. The > > dr. bumped him up to 10mg singulair (he's been on 5mg for 4 years) > and > > I need to call in 2 weeks to update them on how he is or sooner if > > there are problems. > > > > I could kick myself for this one---in August at the pulmo appt., > the > > dr. talked me out of food allergy testing (which I requested, so I > had > > them off their allergy meds for the week--what a DRAG--we were ALL > > miserable that week!). But when we saw the GI later in the month, > I > > said what happened, and he was surprised that the pulmo said that > > because 's tests were 4 years old. BUT, the GI did say that > he > > can order the RAST tests if the need ever comes up. So, do we now > > need to do RAST testing with him to see if he is any more allergic > to > > the foods and/or other things he was before and any new ones? As > a > > baby he was lactose intolerant, but seemed to get over that .... > I > > guess along with every answer comes even more questions. > > > > Thanks for putting up with me! > > > > Have a great day! > > Meg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 has eosinophill entropathy and I agree with everything that said as we know each other from the eos group, but there are lots of great doctors out there treating eos diease and maybe one would be closer to you. I did not get where you lived. Dr. Putnam in CCHMC the team at CHOP Boston childrens Dr. Noel at milwaukee and many others Eosophill has been a huge issue for ALex as he is left on TPN from it, but I will say that is not the norm. He has many ither issues at this point. BUt with the right treatment you can get it under control. The difference becomes how severe their PID is. It can influence everything. That I have learned over the years. Hope this helps. > > > > > > Well, we got the results of 's biopsies 2 days earlier than > I > > had > > > anticipated! He had high concentrations of eosinophils in his > > > esophagus and colon. Hopefully this is the reason for his pain. > The > > > dr. bumped him up to 10mg singulair (he's been on 5mg for 4 > years) > > and > > > I need to call in 2 weeks to update them on how he is or sooner > if > > > there are problems. > > > > > > I could kick myself for this one---in August at the pulmo appt., > > the > > > dr. talked me out of food allergy testing (which I requested, so > I > > had > > > them off their allergy meds for the week--what a DRAG--we were > ALL > > > miserable that week!). But when we saw the GI later in the > month, > > I > > > said what happened, and he was surprised that the pulmo said > that > > > because 's tests were 4 years old. BUT, the GI did say > that > > he > > > can order the RAST tests if the need ever comes up. So, do we > now > > > need to do RAST testing with him to see if he is any more > allergic > > to > > > the foods and/or other things he was before and any new ones? > As > > a > > > baby he was lactose intolerant, but seemed to get over > that .... > > I > > > guess along with every answer comes even more questions. > > > > > > Thanks for putting up with me! > > > > > > Have a great day! > > > Meg > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Hi Meg, Thank for posting the info about your son's test. I think we're going to put Conner through this too and probably Hayden, as well. I was curious to know if they tested him for celiac? I'm really starting to wonder about this for my boys. Take care, Mom to Conner (12, NEMO/XHIM, asthma, Hashimoto's disease and resolved adrenal insufficiency), Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided), Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided), and Kelsey - (10, unknown immune deficiency and asthma) Please visit us at www.caringbridge.org/in/connersmith Quote Link to comment Share on other sites More sharing options...
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