Favorite Links

                   Shwachman-Diamond Syndrome Foundation

This is the organization for Shwachman-Daimond Foundation Links which include, research on the disease, panel of doctors, board of directors and fundraising for research of the disease. It can also tell you where and how to donate bone marrow and support groups online. It is a wonderful group and has been around the longest. They take Neupogen injections to keep their bacteria fighting cells.

http://www.shwachman-diamond.org/you_can_help.htm

                           Primary Immune Disease  

This is a name that cover's over 100 different disorders of the immune system. http://www.primaryimmune.org/about_pi/about_pi.htm This explains what disease they think our kids may have. There is so many and we hope to narrow down to the one we have. Our kids take Sub Q IGG to help them with there disease and keep their immune system in shape. Without the IGG, they get sick often.

http://www.primaryimmune.org/

                    Inherited Bone Marrow Diseases

This is a list of all the genetic bone marrow diseases, including Shwachman-Diamond. Sometimes we wonder if they really know the differences between them all. Of course, there are big differences between some but yet some similarities. The NIH and Dr. Blanch Alter has been studing these diseases for a long time now.

                     Multicystic Kidney Disease

This is what Grace was born with but until she was here, we did not know if she would have either kidney functioning. We were blessed that her left and only kidney has thus far been fine. We keep a watch on it as it is large and can press against organs as well as other infection risks. She did start to develop several infections over the last year but seems fine and we are paying attention.

http://www.mamashealth.com/kidney/multi.asp

ScandiShake is a calorie rich drink for those who have failure to thrive or Pancreatic issues. They lack the enzyme to break down the fat in the pancreas, this causes lots of greesy and bad smelling stools and/or fat in the stools. These shakes help to replace the calories in fat that is needed. They do carry enzymes but we have found Creon works best for us.

        http://www.axcan.com/us_scandishake.php

http://marrowfailure.cancer.gov/

Primary Immune Defiencey Disorder results when one or more essentail parts of the immune system is missing or not working properly at birth because of a genetic defect. Since the immue system is tremendously complex, hundreds of things can go wrong during development and sometimes the backup system cannot compenstate for the defects.  There are hundreds of these diseases and PIDD is a broad name. We still do not know which one of these hundreds of disorders our kids have. It takes many tests and thousands and thousands of dollars and time to find the exact disease. However, we know IGG works on the kids. We do know that our kids ca't hold vaccinations and thus must recieve IGG for life.

www.nichd.nih.gove

http://www.primaryimmune.org/

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