Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 - who treats Jack at Duke? Has he ever been tested for Hyper IgM or NEMO? Ursula - mom to (15) and Macey (12, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://caringbridge.org/ga/macey/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Hi Ursula, He has been tested for both, he's seen mainly by Dr. Larry , but he's also been seen by Dr. Buckley and she's had input in his treatment and diagnosis. --- Ursula Holleman <uahollem1@...> wrote: > - who treats Jack at Duke? Has he ever been > tested for Hyper IgM or NEMO? > > Ursula - mom to (15) and Macey (12, CVID) > http://www.primaryimmune.org > http://www.jmfworld.org > http://caringbridge.org/ga/macey/ > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 The reason I ask is because those are the diagnosis' that seem to be prone to the enterovirus infections that attack the brain. The NIH work has been with boys affected with these two diagnosed PID's. I've heard of Dr. and Dr. Buckley has also been a wonderful resource in Macey's early diagnosis days. I'm curious what deficiency was found that lead to the BMT possibility. Generally most PID's of a b-cell nature are not treated with BMT or cord blood transplant because of the risk of chemo being so great. But if a patient has a combined immune deficiency (CID) which involves a t-cell deficiency or dysfunction they are more of a candidate. Also we've had some CVID patients with severe autoimmune disease who have had BMT's. Some are fortunate enough to resolve their autoimmune problem as well as their b-cell problem but some are still lacking b-cell function and are able to resolve the autoimmune component. Transplant for CVID patients is still a case by case thing and there is no established protocol or criteria as there is for SCID. Ursula - mom to (15) and Macey (12, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://caringbridge.org/ga/macey/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 I think that the enterovirus infection led them to test for Nemo, but he had been tested for the other a while back. They've actually done repeat testing at St. Judes to duplicate all of Duke's tests and the results were still the same. They were going to do the BMT before they found out about the enterovirus infection in the brain cells. All tests for enterovirus from Jack's spinal fluid came back negative until Jack's brain biopsy. Usually when the virus is in the brain, the spinal fluid will reflect that, Jack's viral cultures in his spinal fluid were always negative, although his spinal fluid is abnormal, it's like that of someone with viral miningitis. I should say that he did have a stool sample and nasal wash very early on that came back positive for enterovirus, which is why they continued to follow that lead. Before the biopsy the doctor's were beginning to think he had an autoimmune component that had not been identified yet that was causing his central nervous system decline since they could not identify anything else. The thought was that if it was autoimmune the BMT was an option. --- Ursula Holleman <uahollem1@...> wrote: > The reason I ask is because those are the diagnosis' > that seem to be prone to the enterovirus infections > that attack the brain. The NIH work has been with > boys affected with these two diagnosed PID's. I've > heard of Dr. and Dr. Buckley has also been > a wonderful resource in Macey's early diagnosis > days. I'm curious what deficiency was found that > lead to the BMT possibility. Generally most PID's > of a b-cell nature are not treated with BMT or cord > blood transplant because of the risk of chemo being > so great. But if a patient has a combined immune > deficiency (CID) which involves a t-cell deficiency > or dysfunction they are more of a candidate. Also > we've had some CVID patients with severe autoimmune > disease who have had BMT's. Some are fortunate > enough to resolve their autoimmune problem as well > as their b-cell problem but some are still lacking > b-cell function and are able to resolve the > autoimmune component. Transplant for CVID patients > is still a case by case thing and there is no > established protocol or criteria as there is for > SCID. > > Ursula - mom to (15) and Macey (12, CVID) > http://www.primaryimmune.org > http://www.jmfworld.org > http://caringbridge.org/ga/macey/ > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 that makes sense. they would hopefully have successfully resolved the CNS symptoms as well as his PID. I wish things had turned out better for him. Did you see Dr. Conley at St. Judes? I've heard her speak twice and enjoy it more each time. She's very passionate about what she does. Ursula - mom to (15) and Macey (12, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://caringbridge.org/ga/macey/ Quote Link to comment Share on other sites More sharing options...
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