tag:blogger.com,1999:blog-8621127725178037849.post3155701500339790597..comments2020-01-19T23:59:08.967-08:00Comments on Winning Against Eosinophilic Esophagitis: Eosinophilic Esophagitis Support GroupTracyhttp://www.blogger.com/profile/13057426112879110161noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-8621127725178037849.post-53813804764025132242010-04-03T13:13:35.003-07:002010-04-03T13:13:35.003-07:00Hi! My name is Nancy and I have a 6 month old that...Hi! My name is Nancy and I have a 6 month old that was diagnosed with Eosinophilic Esophagitis. We did the usual switching to at least 4 formulas in the beginning and no one knew why nothing was working. Dr put her on axid and zantac and nothing worked. She just cried all day. It was heart wrenching. At 8 weeks we took her to upper GI and by 10 weeks they did an and endoscopy and a reflective sigmondoscopy. They found 27 of the Eosinophilic cells in her esophagus and they also saw it present in her colon. Meanwhile before that were in the ER with her not knowing why she wouldn't stop crying. They immediately put her on prilosec which is such a pain to give her bc she hates the taste and she's on ele care formula. She seemed to of been getting better but obviously was behind physically and her body was so stiff. She seemed to have some sensory issues going on as well. I had the state evaluate her and she qualified for feeding therapy but was denied PT/OT bc she was so young and the margin was so broad. They told me to have her retested at 6 months and in teh process now. I ended up in Dec taking her to neurologist bc that was one of their recommendations to rule out any other issues and she's fine. However the Dr did diagnosed her with hypertonia and now she's in PT 2 times a week. Things seemed to be ok after that until late January, she's was sleeping through the night and seemed very happy. <br />Then late Jan she was diagnosed with a double ear infection and after it cleared up she remained with a low grade fever (100-100.6) It wouldn't go away and no one knew why. She started projectile vomiting , waking in the night crying, diarrhea and had a loss of appetite. We were send to ER bc her Dr had no idea bc she looked fine when he checked her. They ran blood and urine tests and everything was fine. We were sent home and told to see an infectious disease Dr. He also is baffled. He ran more tests and nothing. It seen so frustrating.<br />One day at teh end of Feb I go to the pharmacy to pick up her monthly dose of prilosec and when I get home I noticed that both the new and old medicines were 2 different colors.(one white and one yellow) I call the pharmacist and he reassures me that it bc the capsules come in different colors at times. In the next breathe he tells me that the prilosec has to be refrigerated. I said, "WHAT? I never read that on the bottle. There was never a sticker nor did anyone tell me when I picked up the medicine!" He seemed flustered as we ended our conversation. I later find out that it looses its ability to work after 2 weeks of being left out. So now my daughter has been reacting do to medicine that hasn't been working. I just sobbed. My poor baby has been through so much. She going to get re scoped at the end of this month and I have a sick feeling her esophagus is going to be more damaged. She's not on any solids bc the allergist wants to wait to see how she is and then start her on a modified feeding program. I have no support here bc I know no one with this. She just completed some patch allergy testing. So far she's allergic to a bunch of foods. She still has the low grade fever. Im forever at the dr. If ts upper GI, allergist, infectious disease, primary and PT. Im trying to educate myself and him on this. It tough. I just dont understand why she isnt sleeping through the night any more. Thanks so much for listening and i really do need some support. <br /><br /><br />NancyNANCYGRACEhttps://www.blogger.com/profile/13532422128845612506noreply@blogger.comtag:blogger.com,1999:blog-8621127725178037849.post-66600495785197070972010-03-16T08:37:53.744-07:002010-03-16T08:37:53.744-07:00So glad to read your story...Our daughter, Stephan...So glad to read your story...Our daughter, Stephanie was much like your son...very healthy, even chubby baby, born in 2005. She ate everything~!!! However, by the age of 3 we still couldn't get her potty trained because her bowel movements were so runny. Constant blow-outs!!! UGH! Thinking back on her first 3 years we also realized that she threw up more than most kids. She'd cough and get sick, get mad and get sick, etc. So we went to GI specialist. Coming out of her scope the GI said, "look at all of that furrowing on her throat. We took biopsies and I think that she has EE. We'll know more in a week when we get the results". Well, she called back a week later and yes, Steph has EE. that was sort of "the end of it". Not much more was said at that time. When talking to a friend at church, who's son had some disease we could never remember, Chrissy said, "OMG, that's what Peter has!" We made lots of visits with our friends to learn more about the disease. A year later I still don't feel like I understand it. Steph, according to RAST is allergic to egg and milk, but it doesn't show on patch testing. We are active in our support group, but haven't gone to Cincinnati Clinic like most of them have. We are now working with a new GI/Allery & Immunologist who is studying EE. Love Dr. Maya in Buffalo. We are currently waiting a return visit to get results from Steph's scope and PH probe testing a few weeks ago. <br />I really don't get on chats or anything, b/c 1. I don't have time, 2. Steph seems so "normal" as oppossed to other kids I read about with an extensive list of food allergies. Sometimes it doesn't seem like she "fits the profile", but I am learning that EE is everchanging and doesn't have to look just one way. Thanks for your story and letting me get mine out!<br />DebbyDebbyhttps://www.blogger.com/profile/03354375150287658690noreply@blogger.com