Guest guest Posted March 28, 2000 Report Share Posted March 28, 2000 HELLO MICHELLE (15YRS OLD) HAD ABOUT 30 SKIN TEST ON HER ARM THIS WAS DURING HER WORST PERIOD SO FAR IT DID NOT CHANGE ANYTHING REGARDING THE EE. SHE TESTED NEGATIVELY TO EVERYTHING YET THE BLOOD TEST SHOWS THAT SHE HAS AN ALLERGY TO GLUTEN AND CORN AND GRASS, CATS, DOGS, BUT THE ARMS PICS CAME OUT FINE. THAT WAS IN FEBRUARY OF THIS YEAR. SINCE THAT EVERTHING WE HAVE TRIED HAS MADE HER SICK. POTATOES, RICE, OATMEAL, BAGELS..BUT SHE TESTED OK FOR THESE ITEMS...WE WERE TOLD THAT CHILDREN HOSPTIAL IN PHILA. IS TRYING A NEW TYPE OF SKIN TEST IN WHICH THEY PUT FRESH FOODS INTO THE SKIN. THIS IS STILL UNDER TREATMENT AND HER DOCTORS WENT TO WAIT TO SEE HOW OTHERS ARE RESPONDING. THESE TESTS ARE FOR FOOD ALLERGY ONLY. IT WOULD BE NICE IF THE TEST WORK SO THAT THE CHILDREN WITH THIS ILLNESS WOULDN'T HAVE TO TRY THE OLD FASHION WAY AND EATING AND GETTING SICK BEFORE WE KNOW WHAT THEY ARE ALLERGY TO. GOOD LUCK DONNA, MICHELLE 15 EE, KATIE 13 ALL ANITCIBODICS, SARA 10 ADHD, MICHEAL 4, AND ONE DUE IN AUGUST ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Hi. My son, Shane, who is 12, was tested twice with skin tests and only showed up allergic to dust mites, nothing else. All the food allergy tests through drawing his blood came up normal, too. He's been sick for two years and has been on a controlled elimination diet for almost a year. They keep taking more and more out of his diet, with not much change. He's still throwing up even though he's been on steroids for almost four months. But he's not throwing up all the time like he was when they restarted the steroids in December. The Hopkins doctors are now talking about having him evaluated at the Kennedy Kreiger Institute, which is affiliated with Hopkins Hospital, to see how they can help. This institute works with the physical symptoms and the psychological/behavioral symptoms. The GI doctor thinks they may be able to help Shane learn how to block out the stomach pain to help control the vomiting. Has anybody heard of the Kennedy Kreiger Institute? What was your experience with them -- good or bad? Has anyone tried the psychological stuff for controlling the pain and vomiting? What were the results -- good or bad? I appreciate any information anyone can give me. Thanks, Lynn " donna zuber " irishjig4@...> on 03/28/2000 10:57:11 PM Please respond to eosinophilic gastroenteritis (AT) onelist (DOT) com To: eosinophilic gastroenteritis (AT) onelist (DOT) com cc: Subject: [eosinophilic gastroenteritis] SKIN TEST HELLO MICHELLE (15YRS OLD) HAD ABOUT 30 SKIN TEST ON HER ARM THIS WAS DURING HER WORST PERIOD SO FAR IT DID NOT CHANGE ANYTHING REGARDING THE EE. SHE TESTED NEGATIVELY TO EVERYTHING YET THE BLOOD TEST SHOWS THAT SHE HAS AN ALLERGY TO GLUTEN AND CORN AND GRASS, CATS, DOGS, BUT THE ARMS PICS CAME OUT FINE. THAT WAS IN FEBRUARY OF THIS YEAR. SINCE THAT EVERTHING WE HAVE TRIED HAS MADE HER SICK. POTATOES, RICE, OATMEAL, BAGELS..BUT SHE TESTED OK FOR THESE ITEMS...WE WERE TOLD THAT CHILDREN HOSPTIAL IN PHILA. IS TRYING A NEW TYPE OF SKIN TEST IN WHICH THEY PUT FRESH FOODS INTO THE SKIN. THIS IS STILL UNDER TREATMENT AND HER DOCTORS WENT TO WAIT TO SEE HOW OTHERS ARE RESPONDING. THESE TESTS ARE FOR FOOD ALLERGY ONLY. IT WOULD BE NICE IF THE TEST WORK SO THAT THE CHILDREN WITH THIS ILLNESS WOULDN'T HAVE TO TRY THE OLD FASHION WAY AND EATING AND GETTING SICK BEFORE WE KNOW WHAT THEY ARE ALLERGY TO. GOOD LUCK DONNA, MICHELLE 15 EE, KATIE 13 ALL ANITCIBODICS, SARA 10 ADHD, MICHEAL 4, AND ONE DUE IN AUGUST ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com ------------------------------------------------------------------------ LOW RATE, NO WAIT! Get a NextCard Visa, in 30 seconds! Get rates as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. Learn more at: http://click.egroups.com/1/937/5/_/474479/_/954302232/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Lynn, I'd be real careful doing the KK thing until you are SURE it is not a physiologic problem. Sharon took her son there last year and although it didnt help him really eat, it did help find a mitochondrial disorder that was adding to the whole process. We briefly had this discussion about these programs with Kody a few months back. If we ever get to that point again, I'm taking him the clinic at Cincinnati. I prefer teh programs and the doctors there -- and so do ALL the docs we see now. No one had anything good to day about KK. Steph --- hudlowl@... wrote: > Hi. My son, Shane, who is 12, was tested twice with > skin tests and only > showed up allergic to dust mites, nothing else. All > the food allergy tests > through drawing his blood came up normal, too. He's > been sick for two > years and has been on a controlled elimination diet > for almost a year. > They keep taking more and more out of his diet, with > not much change. He's > still throwing up even though he's been on steroids > for almost four months. > But he's not throwing up all the time like he was > when they restarted the > steroids in December. The Hopkins doctors are > now talking about > having him evaluated at the Kennedy Kreiger > Institute, which is affiliated > with Hopkins Hospital, to see how they can > help. This institute works > with the physical symptoms and the > psychological/behavioral symptoms. The > GI doctor thinks they may be able to help Shane > learn how to block out the > stomach pain to help control the vomiting. Has > anybody heard of the > Kennedy Kreiger Institute? What was your experience > with them -- good or > bad? Has anyone tried the psychological stuff for > controlling the pain and > vomiting? What were the results -- good or bad? > > I appreciate any information anyone can give me. > > Thanks, > Lynn > > > " donna zuber " irishjig4@...> on 03/28/2000 > 10:57:11 PM > > Please respond to eosinophilic gastroenteritis (AT) onelist (DOT) com > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > cc: > Subject: [eosinophilic gastroenteritis] SKIN TEST > > > > > > > HELLO > > MICHELLE (15YRS OLD) HAD ABOUT 30 SKIN TEST ON HER > ARM THIS WAS DURING HER > WORST PERIOD SO FAR IT DID NOT CHANGE ANYTHING > REGARDING THE EE. SHE > TESTED > NEGATIVELY TO EVERYTHING YET THE BLOOD TEST SHOWS > THAT SHE HAS AN ALLERGY > TO > GLUTEN AND CORN AND GRASS, CATS, DOGS, BUT THE ARMS > PICS CAME OUT FINE. > THAT WAS IN FEBRUARY OF THIS YEAR. SINCE THAT > EVERTHING WE HAVE TRIED HAS > MADE HER SICK. POTATOES, RICE, OATMEAL, BAGELS..BUT > SHE TESTED OK FOR > THESE > ITEMS...WE WERE TOLD THAT CHILDREN HOSPTIAL IN > PHILA. IS TRYING A NEW TYPE > OF SKIN TEST IN WHICH THEY PUT FRESH FOODS INTO THE > SKIN. THIS IS STILL > UNDER TREATMENT AND HER DOCTORS WENT TO WAIT TO SEE > HOW OTHERS ARE > RESPONDING. THESE TESTS ARE FOR FOOD ALLERGY ONLY. > IT WOULD BE NICE IF > THE > TEST WORK SO THAT THE CHILDREN WITH THIS ILLNESS > WOULDN'T HAVE TO TRY THE > OLD FASHION WAY AND EATING AND GETTING SICK BEFORE > WE KNOW WHAT THEY ARE > ALLERGY TO. > > > GOOD LUCK > DONNA, MICHELLE 15 EE, KATIE 13 ALL ANITCIBODICS, > SARA 10 ADHD, MICHEAL 4, > AND ONE DUE IN AUGUST > ______________________________________________________ > Get Your Private, Free Email at > http://www.hotmail.com > > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro or 9.9% Fixed APR and no hidden > fees. > Learn more at: > http://click.egroups.com/1/937/5/_/474479/_/954302232/ > ------------------------------------------------------------------------ > > > > > > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > Apply NOW! > http://click.egroups.com/1/2646/5/_/474479/_/954543158/ > ------------------------------------------------------------------------ > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Steph, What's a 'mitochondrial disorder'? When you say to be careful about doing the KK thing 'until you are SURE it is not a physiologic problem' what does that mean? That I should be sure FIRST that Shane's problem is psychological before taking him to KK? There has been some discussion about how much of his stomach pain is because of the EG disease and how much is because he is so used to having stomach pain that he overreacts. But that is something Kennedy Kreiger is supposed to help me determine. The more I read about what others with this disease are going through, the more I think it's mostly physical from the EG/EE. And he was diagnosed in May 1998 with high eos counts in his stomach, esophagus, and intestines, which is this disease. His last biopsies in April 1999 showed high a eos count in his esophagus with the other two organs in the normal range. But that sounds like your experience, too. Are you saying that the clinic in Cincinnati is preferred over Hopkins Hospital, or just over Kennedy Kreiger Institute? What are the concerns with Kennedy Kreiger? What is the full name of the clinic in Cincinnati? Thanks for any info you can give me, Lynn stephanie harlow harlowsteph@...> on 04/02/2000 05:42:54 PM Please respond to eosinophilic gastroenteritis (AT) onelist (DOT) com To: eosinophilic gastroenteritis (AT) onelist (DOT) com cc: Subject: Re: [eosinophilic gastroenteritis] SKIN TEST Lynn, I'd be real careful doing the KK thing until you are SURE it is not a physiologic problem. Sharon took her son there last year and although it didnt help him really eat, it did help find a mitochondrial disorder that was adding to the whole process. We briefly had this discussion about these programs with Kody a few months back. If we ever get to that point again, I'm taking him the clinic at Cincinnati. I prefer teh programs and the doctors there -- and so do ALL the docs we see now. No one had anything good to day about KK. Steph Quote Link to comment Share on other sites More sharing options...
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