tag:blogger.com,1999:blog-14649024.post2758917244946279945..comments2024-02-13T13:47:56.739-08:00Comments on David McNally - Wiskott Aldrich Syndrome, Bone Marrow Transplant, and Graft-vs-Host Disease: 1st WAS Family Conference, July 30-Aug 1, 2010Aimeehttp://www.blogger.com/profile/13851001723699650438noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-14649024.post-90810815022323908442010-07-30T11:08:27.879-07:002010-07-30T11:08:27.879-07:00just my luck =) i find about this the day of the c...just my luck =) i find about this the day of the conference :)<br /><br />My son is a bit older, but has gone through some of the same things as yours. <br /><br />at 9 months old, he had a major bleed (caused blindness, and loss of motor control on his left side, and he is developmentally delayed, but is now starting to catchup at a very fast rate)<br /><br />we had the bone marrow transplant at 18 months, which was a 9/10 match (we had a 10/10 but the person kept changing there mind)<br /><br /><br />i see from the medicine list you are on alot of the same ones we are on..<br /><br />Levothoroxane we take 1 1/2 pills (found out if you give this with any iron/magnesium supplement it lowers its affectivness)<br /><br />Prednisolone 3 1/2 years of this. <br /><br />Calcium/Magnesium/Zinc supplement<br />on all of these. Calcium actually reversed the rapid bone age progression caused by the predinsolone<br /><br /><br />for the skin issue, we went though a bunch of the same things. for us it ended up being caused by the sun (go figure, we live in Seattle rain capital of the us) sun block (spf 50 and higher) worked for us. <br /><br /><br />we did ivig for 3 almost 4 years. <br /><br />out here in Seattle Dr hans ochs (my son's doctor that we moved from ny to see) he has discovered two very important things. 1 the test to detect WAS and the second thing is a test called Bacteriophage which injects a harmless virus into the immune system, and from there they can detect how well the immune system is working.<br /><br /><br />if you have any questions please feel free to contact me <br /><br />Derek<br /><br />dlbeaney at yahoo dot comDerek Beaneynoreply@blogger.com