Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Thanks for replies. They only did the stool tests from the 1st colitis once, ordered at the ER. I dont see any tests for amylase or lipase but bilirubin is ..7 with range .2-1.1 on most recent labs. I also don't see LDH. Are those all tests for the liver? His GI doc has been next to impossible to get hold of, their practice was bought out and they are now very understaffed. We have an appt with a new GI on 12-30. As far as his gallbladder, I think I've they have done is the CT to check for stones. Thanks @...: dietdoc@...: Wed, 17 Dec 2008 03:46:53 -0800Subject: Re: Help? Any Ideas? " ...sinus infections, bronchitis, migraines(butthey have been around for a very long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with infectious colitis, stool samples had blood inthem but cultures showed no infection... -mild inflammation inthe transverse colon and esophagus. Comes down with bronchitis againthe following week and ends up two weeks from the first visit to ER-back in the ER with identical problem of infectious colitis (notreatment, just pain killers). During both of these times with thecolitis he complains of back pain...Increasenexium and add sucralfate...Vomitingstarts from 1-4 am lasts most of the day...right side and up between shoulder blade...cloudy urine, 2+ protein in urine, slightly elevated liver enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa,I don't have answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they do 3 consecutive stool tests to check for c.diff toxin?Liver/stones: Did they check LDH (lactate dehydrogenase) for a liver problem? Did they check for gallstones?Pancreas: Did they check amylase and lipase? Bilirubin?mom to CVIDer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Theresa, Severe back pain that radiates to shoulder and vomiting can be related to the pancreas. Severe lower back pain and blood in the stool is consistent with colitis. I'm not sure if you can rule either out at this point. If they are drawing blood, you might request a pancreas panel -- the problem is that enzyme levels fall off quickly so you have to do the draw when there is pain. Like at an ER visit. Also, it sounds to me that they have not done a good job at evaluating infectious colitis. I'd ask for a bunch of sterile containers and requisition orders for stool tests (especially c.diff toxin due to his history of CVID/anti-microbials). You'll need multiple data points to identify what's really going on. And you don't even need to bother the doc to get this done. You just need to coordinate with the hospital or lab. (Make sure you read the instructions on collecting stool super carefully. I've had numerous tests run incorrectly because the lab will run almost anything you give them and, if it's not *very* fresh, forget about it...) If you need ideas for competent GIs that " get " CVID post to the group. Where are you located? Sorry that I can't be more help. ________________________________ From: TERESA EOS <tereeos6@...> group < > Sent: Wednesday, December 17, 2008 10:42:02 AM Subject: RE: Help? Any Ideas? Thanks for replies. They only did the stool tests from the 1st colitis once, ordered at the ER. I dont see any tests for amylase or lipase but bilirubin is ..7 with range .2-1.1 on most recent labs. I also don't see LDH. Are those all tests for the liver? His GI doc has been next to impossible to get hold of, their practice was bought out and they are now very understaffed. We have an appt with a new GI on 12-30. As far as his gallbladder, I think I've they have done is the CT to check for stones. Thanks groups (DOT) comFrom: dietdocsbcglobal (DOT) netDate: Wed, 17 Dec 2008 03:46:53 -0800Subject: Re: Help? Any Ideas? " ...sinus infections, bronchitis, migraines(butthey have been around for a very long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with infectious colitis, stool samples had blood inthem but cultures showed no infection... -mild inflammation inthe transverse colon and esophagus. Comes down with bronchitis againthe following week and ends up two weeks from the first visit to ER-back in the ER with identical problem of infectious colitis (notreatment, just pain killers). During both of these times with thecolitis he complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts from 1-4 am lasts most of the day...right side and up between shoulder blade...cloudy urine, 2+ protein in urine, slightly elevated liver enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa, I don't have answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they do 3 consecutive stool tests to check for c.diff toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase) for a liver problem? Did they check for gallstones?Pancreas : Did they check amylase and lipase? Bilirubin?mo m to CVIDer [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 http://www.mayoclinic.com/health/abdominal-pain/DG00013 Theresa, I just found this article and you might find it helpful. It lists different kinds of GI related pain and associates it with possible condition and when to call the doc. It's a must read for everyone. ________________________________ From: TERESA EOS <tereeos6@...> group < > Sent: Wednesday, December 17, 2008 10:42:02 AM Subject: RE: Help? Any Ideas? Thanks for replies. They only did the stool tests from the 1st colitis once, ordered at the ER. I dont see any tests for amylase or lipase but bilirubin is ..7 with range .2-1.1 on most recent labs. I also don't see LDH. Are those all tests for the liver? His GI doc has been next to impossible to get hold of, their practice was bought out and they are now very understaffed. We have an appt with a new GI on 12-30. As far as his gallbladder, I think I've they have done is the CT to check for stones. Thanks groups (DOT) comFrom: dietdocsbcglobal (DOT) netDate: Wed, 17 Dec 2008 03:46:53 -0800Subject: Re: Help? Any Ideas? " ...sinus infections, bronchitis, migraines(butthey have been around for a very long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with infectious colitis, stool samples had blood inthem but cultures showed no infection... -mild inflammation inthe transverse colon and esophagus. Comes down with bronchitis againthe following week and ends up two weeks from the first visit to ER-back in the ER with identical problem of infectious colitis (notreatment, just pain killers). During both of these times with thecolitis he complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts from 1-4 am lasts most of the day...right side and up between shoulder blade...cloudy urine, 2+ protein in urine, slightly elevated liver enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa, I don't have answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they do 3 consecutive stool tests to check for c.diff toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase) for a liver problem? Did they check for gallstones?Pancreas : Did they check amylase and lipase? Bilirubin?mo m to CVIDer [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 ---That sounds exactly like my symptoms right before I had my gall bladder out. My sister had hers out too.....and we would both describe it like a stabbing, or even a charlie horse, between the shoulder blades. I was pregnant at the time, and drs kept telling me it was the baby kicking(it was myfirst kid so I believed them!) But have they checked his gall bladder out? valarie mom to 3 w/cvid In , TERESA EOS <tereeos6@...> wrote: > > > Hi All, > > My son Devin, 16, CVID has had a bad year. Nothing really major, but just constant problems, sinus infections, bronchitis, migraines(but they have been around for a very long time) and stomach trouble. Not much help from doctors. > > First couple weeks of school were great, no problems at all (only 1 bad headache) > After abasketball workout he had bad stomach pain (he had 7 ulcers found a few years ago & he thought his stomach was just acting up). We finally went to ER his pain was really bad, CT showed entire colon inflamed, diagnosed with infectious colitis, stool samples had blood in them but cultures showed no infection. Sent home-pain for 3 days then back to normal. Went in approx. 1 week after ER visit for colonoscopy & upper endoscopy nothing out of the ordinary -mild inflammation in the transverse colon and esophagus. Comes down with bronchitis again the following week and ends up two weeks from the first visit to ER- back in the ER with identical problem of infectious colitis (no treatment, just pain killers). During both of these times with the colitis he complains of back pain. About 1 week after 2nd colitis has stabbing pain in lower right back, was not doing any exercise or activity to bring on became very severe, after several trips to doctors simply told it was muscle pain. Went away about 5 days later. About 6 days after that- pain in middle back when swallowing liquid or food, to the point he was unable to eat or drink. Sometimes pain radiated out to the right side and up between shoulder blades. After CT scan, upper gi - nothing found, the docs best bet was ulcer in esophagus. Increase nexium and add sucralfate. Since the back pain starting in the mid-back he has had 5 seperate > days about 3 to 4 days apart of what seems like a stomach flu. Vomiting starts from 1-4 am lasts most of the day. He said it feels like food poisoning. Pain in the back has continued intermittently but much more intense on right side and up between shoulder blade. Latest labs showed cloudy urine, 2+ protein in urine, slightly elevated liver enzymes, high A/G ratio. Immuno says not related to symptoms. Any ideas? > > Thanks, > (Mom to Devin, 16, CVID) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 , I'm glad to hear we weren't the only ones! I had heard amazing things about Dr. Gelfand and so we waited months for an appointment to see him and then flew up there from Texas and spent 2 weeks for testing. Although their eczema treatment program was wonderful and ended up being a lifesaver for us and Reagon..I was very disappointed with the immunology aspect of it. He probably spent a total of 15 min. talking to us in the 2 weeks we were there..didn't show up for a " sit down group discussion " for a treatment plan that he was supposed to be at with us and the other docs and never bothered to follow up with us on results for some tests he ran! I know these doctors are very busy..but I have to say, I left very disappointed! Becki Reagon 7 yrs CVID > > > We aren't too far from National Jewish. We have had a visit with Dr. Gelfand there a little over a year ago and had a bad experience, so I've been leary to go back to National Jewish. I will certainly look up Dr. Leung and see if he's still around. It seems like everytime I read about another kiddo in the group having trouble their doctors are so much more aggressive in seeking an answer. It seems like most of the docs we see in the ER and otherwise are a little overwhelmed by his problems. These replies have all been very helpful, thanks so much. > > > > > > @...: dietdoc@...: Thu, 18 Dec 2008 19:58:32 +0000Subject: Re: Help? Any Ideas? > > > > I'm so sorry that I don't have answers for you. But, if he has pain and a blood draw, I'd ask that the docs recheck liver panel and pancreas (lipases). Also, get proper stool samples for the whole shebang (microorganisms and eggs). Are you near Nat. Jewish? Our immuno once consulted with a dr. Leung (immuno/GI) years ago. Perhaps others have ideas for trustworthy GIs in your area. I'm not sure what the protocol is for checking gallbladder. But you should have a doctor you can defer to for answers. Keep us posted. Sent on the Now Network� from my Sprint® BlackBerry Re: Help? Any Ideas? " ...sinus infections, bronchitis, migraines(butthey have been around for a very long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with infectious colitis, stool samples had blood inthem but cultures showed no infection... -mild inflammation inthe transverse colon and esophagus. Comes down with bronchitis againthe following week and ends up two weeks from the first visit to ER-back in the ER with identical problem of infectious colitis (notreatment, just pain killers). During both of these times with thecolitis he complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts from 1-4 am lasts most of the day...right side and up between shoulder blade...cloudy urine, 2+ pro! tein in urine, slightly elevated liver enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa, I don't have answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they do 3 consecutive stool tests tocheck for c.diff toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase) for a liver problem? Did they check for gallstones?Pancreas : Did they check amylase and lipase? Bilirubin? mo m to CVIDer [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 I would not stand for that kind of behavior. I would and have in the past written letters to the institution that they work with. ( Much harder to deal with when they are in private practice) He has the responsibility to give you appropriate care. That means showing up for appointments etc. There is NO emergency in Immunology that gives him that excuse. Could be one in OB, Surgery, Neuro etc but not Immunology. You paid money, time and personal concern for him to shun you. I think the insurance should also be played into the loop if he gets paid at all. BARBIE ________________________________ From: Becki Rion <rionfam@...> Sent: Friday, December 26, 2008 4:04:13 PM Subject: Re: Help? Any Ideas? , I'm glad to hear we weren't the only ones! I had heard amazing things about Dr. Gelfand and so we waited months for an appointment to see him and then flew up there from Texas and spent 2 weeks for testing. Although their eczema treatment program was wonderful and ended up being a lifesaver for us and Reagon..I was very disappointed with the immunology aspect of it. He probably spent a total of 15 min. talking to us in the 2 weeks we were there..didn' t show up for a " sit down group discussion " for a treatment plan that he was supposed to be at with us and the other docs and never bothered to follow up with us on results for some tests he ran! I know these doctors are very busy..but I have to say, I left very disappointed! Becki Reagon 7 yrs CVID > > > We aren't too far from National Jewish. We have had a visit with Dr. Gelfand there a little over a year ago and had a bad experience, so I've been leary to go back to National Jewish. I will certainly look up Dr. Leung and see if he's still around. It seems like everytime I read about another kiddo in the group having trouble their doctors are so much more aggressive in seeking an answer. It seems like most of the docs we see in the ER and otherwise are a little overwhelmed by his problems. These replies have all been very helpful, thanks so much. > > > > > > @...: dietdoc@...: Thu, 18 Dec 2008 19:58:32 +0000Subject: Re: Help? Any Ideas? > > > > I'm so sorry that I don't have answers for you. But, if he has pain and a blood draw, I'd ask that the docs recheck liver panel and pancreas (lipases). Also, get proper stool samples for the whole shebang (microorganisms and eggs). Are you near Nat. Jewish? Our immuno once consulted with a dr. Leung (immuno/GI) years ago. Perhaps others have ideas for trustworthy GIs in your area. I'm not sure what the protocol is for checking gallbladder. But you should have a doctor you can defer to for answers. Keep us posted. Sent on the Now Network� from my Sprint® BlackBerry Re: Help? Any Ideas? " ...sinus infections, bronchitis, migraines(butthey have been around for a very long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with infectious colitis, stool samples had blood inthem but cultures showed no infection... -mild inflammation inthe transverse colon and esophagus. Comes down with bronchitis againthe following week and ends up two weeks from the first visit to ER-back in the ER with identical problem of infectious colitis (notreatment, just pain killers). During both of these times with thecolitis he complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts from 1-4 am lasts most of the day...right side and up between shoulder blade...cloudy urine, 2+ pro! tein in urine, slightly elevated liver enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa, I don't have answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they do 3 consecutive stool tests tocheck for c.diff toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase) for a liver problem? Did they check for gallstones?Pancreas : Did they check amylase and lipase? Bilirubin? mo m to CVIDer [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Becki, I have looked up some other docs at National Jewish and I'm going to give them another try. had suggested Dr. Lueng who is still there and I have set an appointment with him. (Thanks ) I'm going to specifically ask not to see Dr. Gelfand. He doesn't seem to need medical records, labs, or history to un-diagnose an immune deficiency which kind of left my head spinning a bit. His opinion was that Devin couldn't have an immune problem because he had allergies to cats, dogs, dust and trees and because he looked fine. I really am only looking for a new immunologist because we have been with our current one for several years and Devin is still frequently ill. He's been on IVIG and now sub-q for almost 4 years and his IGG levels are staying around 680-700. I'm just not sure that's enough for him. In the meantime we see a new GI doctor who I hope will be more available than our old one. Devin had another night of vomiting last night that started around 2:30 a.m. and again with the middle back pain when eating. I kind of figure it's time for some new eyes. He just has a lot of chronic problems that really disrupt his life and he's just sick of it and of course so am I. Mom Devin 16 CVID @...: rionfam@...: Fri, 26 Dec 2008 22:04:13 +0000Subject: Re: Help? Any Ideas? ,I'm glad to hear we weren't the only ones! I had heard amazing things about Dr. Gelfand and so we waited months for an appointment to see him and then flew up there from Texas and spent 2 weeks for testing. Although their eczema treatment program was wonderful and ended up being a lifesaver for us and Reagon..I was very disappointed with the immunology aspect of it. He probably spent a total of 15 min. talking to us in the 2 weeks we were there..didn't show up for a " sit down group discussion " for a treatment plan that he was supposed to be at with us and the other docs and never bothered to follow up with us on results for some tests he ran! I know these doctors are very busy..but I have to say, I left very disappointed! BeckiReagon 7 yrs CVID >> > We aren't too far from National Jewish. We have had a visit with Dr. Gelfand there a little over a year ago and had a bad experience, so I've been leary to go back to National Jewish. I will certainly look up Dr. Leung and see if he's still around. It seems like everytime I read about another kiddo in the group having trouble their doctors are so much more aggressive in seeking an answer. It seems like most of the docs we see in the ER and otherwise are a little overwhelmed by his problems. These replies have all been very helpful, thanks so much.> > > > > > @...: dietdoc@...: Thu, 18 Dec 2008 19:58:32 +0000Subject: Re: Help? Any Ideas?> > > > I'm so sorry that I don't have answers for you. But, if he has pain and a blood draw, I'd ask that the docs recheck liver panel and pancreas (lipases). Also, get proper stool samples for the whole shebang (microorganisms and eggs). Are you near Nat. Jewish? Our immuno once consulted with a dr. Leung (immuno/GI) years ago. Perhaps others have ideas for trustworthy GIs in your area. I'm not sure what the protocol is for checking gallbladder. But you should have a doctor you can defer to for answers. Keep us posted. Sent on the Now Network� from my Sprint® BlackBerry Re: Help? Any Ideas? " ...sinus infections, bronchitis, migraines(butthey have been around for a very long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with infectious colitis, stool samples had blood inthem but cultures showed no infection... -mild inflammation inthe transverse colon and esophagus. Comes down with bronchitis againthe following week and ends up two weeks from the first visit to ER-back in the ER with identical problem of infectious colitis (notreatment, just pain killers). During both of these times with thecolitis he complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts from 1-4 am lasts most of the day...right side and up between shoulder blade...cloudy urine, 2+ pro! tein in urine, slightly elevated liver enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa, I don't have answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they do 3 consecutive stool tests tocheck for c.diff toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase) for a liver problem? Did they check for gallstones?Pancreas : Did they check amylase and lipase? Bilirubin?mo m to CVIDer [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi Theresa, I am so sorry you are continuing to have trouble with Devin's health. I know with Lucas he does the best with at least a 900 IgG level. It greatly depends on where Devins dysfunctions are in relation to his B and T Cells. Lucas has SEVERE allergies that started as an infant and he was never precluded as a patient with immune dysfunction. Interesting that both of his Immunologists both in Bellingham WA and here in Tulsa,OK trained at National Jewish. But both have been wonderful. So I think it is clearly this man and his arogance that is allowing him to behave this ignorant way. It angers me to hear what you have both had to say about it and I would encourage you to contact National Jewish and make a complaint regarding how his behavior has impacted your lives. BARBIE ________________________________ From: TERESA EOS <tereeos6@...> group < > Sent: Friday, December 26, 2008 8:59:49 PM Subject: RE: Re: Help? Any Ideas? Becki, I have looked up some other docs at National Jewish and I'm going to give them another try. had suggested Dr. Lueng who is still there and I have set an appointment with him. (Thanks ) I'm going to specifically ask not to see Dr. Gelfand. He doesn't seem to need medical records, labs, or history to un-diagnose an immune deficiency which kind of left my head spinning a bit. His opinion was that Devin couldn't have an immune problem because he had allergies to cats, dogs, dust and trees and because he looked fine. I really am only looking for a new immunologist because we have been with our current one for several years and Devin is still frequently ill. He's been on IVIG and now sub-q for almost 4 years and his IGG levels are staying around 680-700. I'm just not sure that's enough for him. In the meantime we see a new GI doctor who I hope will be more available than our old one. Devin had another night of vomiting last night that started around 2:30 a.m. and again with the middle back pain when eating. I kind of figure it's time for some new eyes. He just has a lot of chronic problems that really disrupt his life and he's just sick of it and of course so am I. Mom Devin 16 CVID groups (DOT) comFrom: rionfamgvtc (DOT) comDate: Fri, 26 Dec 2008 22:04:13 +0000Subject: Re: Help? Any Ideas? ,I'm glad to hear we weren't the only ones! I had heard amazing things about Dr. Gelfand and so we waited months for an appointment to see him and then flew up there from Texas and spent 2 weeks for testing. Although their eczema treatment program was wonderful and ended up being a lifesaver for us and Reagon..I was very disappointed with the immunology aspect of it. He probably spent a total of 15 min. talking to us in the 2 weeks we were there..didn' t show up for a " sit down group discussion " for a treatment plan that he was supposed to be at with us and the other docs and never bothered to follow up with us on results for some tests he ran! I know these doctors are very busy..but I have to say, I left very disappointed! BeckiReagon 7 yrs CVID >> > We aren't too far from National Jewish. We have had a visit with Dr. Gelfand there a little over a year ago and had a bad experience, so I've been leary to go back to National Jewish. I will certainly look up Dr. Leung and see if he's still around. It seems like everytime I read about another kiddo in the group having trouble their doctors are so much more aggressive in seeking an answer. It seems like most of the docs we see in the ER and otherwise are a little overwhelmed by his problems. These replies have all been very helpful, thanks so much.> > > > > > @...: dietdoc@...: Thu, 18 Dec 2008 19:58:32 +0000Subject: Re: Help? Any Ideas?> > > > I'm so sorry that I don't have answers for you. But, if he has pain and a blood draw, I'd ask that the docs recheck liver panel and pancreas (lipases). Also, get proper stool samples for the whole shebang (microorganisms and eggs). Are you near Nat. Jewish? Our immuno once consulted with a dr. Leung (immuno/GI) years ago. Perhaps others have ideas for trustworthy GIs in your area. I'm not sure what the protocol is for checking gallbladder. But you should have a doctor you can defer to for answers. Keep us posted. Sent on the Now Network� from my Sprint® BlackBerry Re: Help? Any Ideas? " ...sinus infections, bronchitis, migraines(butthey have been around for a very long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with infectious colitis, stool samples had blood inthem but cultures showed no infection... -mild inflammation inthe transverse colon and esophagus. Comes down with bronchitis againthe following week and ends up two weeks from the first visit to ER-back in the ER with identical problem of infectious colitis (notreatment, just pain killers). During both of these times with thecolitis he complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts from 1-4 am lasts most of the day...right side and up between shoulder blade...cloudy urine, 2+ pro! tein in urine, slightly elevated liver enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa, I don't have answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they do 3 consecutive stool tests tocheck for c.diff toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase) for a liver problem? Did they check for gallstones?Pancreas : Did they check amylase and lipase? Bilirubin?mo m to CVIDer [Non-text portions of this message have been removed] [Non-text portions of this message have been removed][Non- text portions of this message have been removed][Non- text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 , Sounds like you got the same kind of response that we did...only with us he said there was no way Reagon was having allergies because she has no IgE and that the skin rash she had was not eczema..even though the dermatologist there had already said it was. We now follow their eczema regiment as treatment for it. He acted like I was crazy when I told him that although she had no IgE, she tested positive for food sensitivities that were cellular immune mediated and that when we cut the foods out that she tested positive for, her GI and skin issues would resolve. Since we were there two weeks I even let them feed her a known food sensitivity and she broke out within hours of eating it. He still wouldn't believe me. He also wouldn't believe how severe her reactions to IVIG were and told me he'd have to see one to believe it because he was able to infuse IVIG to patients in an hour without causing any side effects. I left frustrated with that aspect of our visit, but very happy with the eczema treatment knowledge we learned there. Good luck! I know how frustrating it is when no one can figure these poor kids out!! I hope you get some answers soon. Becki Quote Link to comment Share on other sites More sharing options...
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