Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Between 2001 and 2003 Macey had a hemoc for her IVIG and immune issues. He was very black and white (which I guess you have to be when you are dealing with cancer so much). In his opinion Macey would always have this disorder, never be cured and always be on infusions. In 2003 we found a ped immunologist 2 hr away (the hemoc was 20 min away) and we switched. We get a much more upbeat prognosis, faster lab results called and more interaction about associated GI and Lung conditions. I've noticed that the hemoc are quicker to want to jump on the BMT bandwagon for PID's. They see a depleted system, old nature makes them want to restart it with new marrow (or stem cells) and they just don't understand that a PID is not a cancer. It requires a different approach and different chemo protocols. We're much better off I believe with an immunologist. Ursula - mom to Macey (10,CVID) and (13) http://members.cox.net/maceyh Immune Deficiency Foundation http://www.primaryimmune.org Pediatric PID email list Modell Foundation http://jmfworld.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 , my kids see the hematologist because their main disorder is a genetic bone marrow failure syndrome (Shwachman-Diamond Syndrome) and these are the main doctors who deal with SDS. (GI AND HEM) I don't know many SDS kids that have immunologists involved-- there are a few of us out there..... our hem sent us to an immunologist when 's immunoglobulins came back low.... and then our hem has been the one to take care of us. I really think it depends on the disease-- while could fit other diagnoses, they have just kept everything under the one Shwachman-Diamond SyndromeSyndrome main label. We are lucky (if you call it that) in that, unlike the hems Ursula has met, ours have never pushed for BMT-- mainly because they are familiar with SDS and know that the stats are bad even with a special protocol (2005 literature says the survival rate is 50%) -- oddly enough, it is our immunologist who is pushing us to see the BMT team at Duke! We don't go to Duke right now, but he thinks we should get in with the BMT team to be ready if/when the time comes. Also-- our hems here at the Children's don't do as much IVIG as the immunologists do-- this is from the nurses--- so they tend to be " behind the times " in some respects. Hey--LSU just beat Duke...got any Tiger fans out there? Geaux Tigers! +JMJ+ Peace Be With You, ><>Pattie Piedmont Triad, NC Mom to , age 11 & healthy; age 9, Shwachman-Diamond Syndrome; and ph age 8, Shwachman-Diamond Syndrome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Dumb question here, what does hem stand for? Cassie Pattie Curran wrote: > , my kids see the hematologist because their main disorder is a > genetic bone marrow failure syndrome (Shwachman-Diamond Syndrome) and > these are the main doctors who deal with SDS. (GI AND HEM) I don't > know many SDS kids that have immunologists involved-- there are a few > of us out there..... our hem sent us to an immunologist when 's > immunoglobulins came back low.... and then our hem has been the one > to take care of us. I really think it depends on the disease-- while > could fit other diagnoses, they have just kept everything under > the one Shwachman-Diamond SyndromeSyndrome main label. We are lucky > (if you call it that) in that, unlike the hems Ursula has met, ours > have never pushed for BMT-- mainly because they are familiar with SDS > and know that the stats are bad even with a special protocol (2005 > literature says the survival rate is 50%) -- oddly enough, it is our > immunologist who is pushing us to see the BMT team at Duke! We don't > go to Duke right now, but he thinks we should get in with the BMT team > to be ready if/when the time comes. > > Also-- our hems here at the Children's don't do as much IVIG as the > immunologists do-- this is from the nurses--- so they tend to be > " behind the times " in some respects. > > Hey--LSU just beat Duke...got any Tiger fans out there? Geaux Tigers! > > +JMJ+ > Peace Be With You, > ><>Pattie > Piedmont Triad, NC > Mom to , age 11 & healthy; age 9, Shwachman-Diamond > Syndrome; and ph age 8, Shwachman-Diamond Syndrome. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hematologist (blood ) many are hematologist/oncologists and in our case our hem is a hem and a board certified hematopathologist Peace Be With You, Pattie Don't let your past dictate who you are now, but let it be a part of who you will become. _____ From: [mailto: ] On Behalf Of cassie Sent: Thursday, March 23, 2006 11:11 PM Subject: Re: hem docs Dumb question here, what does hem stand for? Cassie Pattie Curran wrote: > , my kids see the hematologist because their main disorder is a _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hematologist (blood ) many are hematologist/oncologists and in our case our hem is a hem and a board certified hematopathologist Peace Be With You, Pattie Don't let your past dictate who you are now, but let it be a part of who you will become. _____ From: [mailto: ] On Behalf Of cassie Sent: Thursday, March 23, 2006 11:11 PM Subject: Re: hem docs Dumb question here, what does hem stand for? Cassie Pattie Curran wrote: > , my kids see the hematologist because their main disorder is a _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 That is kinda what I was thinking but needed to make sure. Cassie Pattie Curran wrote: > Hematologist (blood ) many are hematologist/oncologists and in our case > our hem is a hem and a board certified hematopathologist > > > > Peace Be With You, > > > > Pattie > > Don't let your past dictate who you are now, but let it be a part of > who you > will become. > > _____ > > From: [mailto: ] On Behalf Of > cassie > Sent: Thursday, March 23, 2006 11:11 PM > > Subject: Re: hem docs > > > > Dumb question here, what does hem stand for? > Cassie > > Pattie Curran wrote: > > > , my kids see the hematologist because their main disorder is a > > > > _____ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Ursula, That is very interesting to me to hear that! Reagon has always seen a hemoc and from day one he has pushed for BMT..which we have always felt was very extreme given her very good condition. She had an ear infection last spring and he wanted to put her on some very, very strong antibiotic for a month for it. I took her to an ENT instead and it responded to a normal round of Augmentin! Then last year she developed a foot problem. It took us a year to get it diagnosised properly because he kept telling the drs. he referred us to before we went in that he thought it was autoimmune related and was arthritis or neuropathy. He was very upset when I wouldn't let him start her on a pill form of chemo that they used for severe pediatric arthritis. It turns out she has something called Kohler's disease (totally unrelated to her PID) and just is when a bone in the foot won't grow properly! She was casted for 3 weeks and wore a brace for 2 months and is now doing great!!! It took us a year and 5 drs. to get to that though because of our hemoc leading everyone in the wrong direction. It wasn't until I went to a dr. that I found on my own that we finally got a correct diagnosis. I want to cry when I think of all the test they put her through... nerve stimulation..where they basically " shock the nerves to get a response, muscle sticks..where they insert a needle into the muscles to get a reaction, 5 MRI's, 2 bonescans, 4 catscans, bone density test and about a million Xrays w/o giving us one correct answer and it took the dr. that diagnosised it 2 Xrays, in his office, to diagnosis it! And I shudder to think what she would have gone through had I let her hemoc start her on chemo. w/o even knowing what he was treating!!! We started seeing a new immunoligist after all this ordeal....I guess that was a good decision! Becki Reagon CVID, asthma, allergies Re: hem docs Between 2001 and 2003 Macey had a hemoc for her IVIG and immune issues. He was very black and white (which I guess you have to be when you are dealing with cancer so much). In his opinion Macey would always have this disorder, never be cured and always be on infusions. In 2003 we found a ped immunologist 2 hr away (the hemoc was 20 min away) and we switched. We get a much more upbeat prognosis, faster lab results called and more interaction about associated GI and Lung conditions. I've noticed that the hemoc are quicker to want to jump on the BMT bandwagon for PID's. They see a depleted system, old nature makes them want to restart it with new marrow (or stem cells) and they just don't understand that a PID is not a cancer. It requires a different approach and different chemo protocols. We're much better off I believe with an immunologist. Ursula - mom to Macey (10,CVID) and (13) http://members.cox.net/maceyh Immune Deficiency Foundation http://www.primaryimmune.org Pediatric PID email list Modell Foundation http://jmfworld.org This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 In a message dated 3/23/2006 8:36:00 PM Pacific Standard Time, nurse2008@... writes: That is kinda what I was thinking but needed to make sure. Cassie Cassie, I just wanted to say that there are no dumb questions. Good for you for asking! Sandi, Mom to --age 13--CVID Quote Link to comment Share on other sites More sharing options...
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