Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Thanks , Yes!! please. I'd love to talk. You can find my number below. Evan is almost 9 months. Would it be unsual for him to still have normal numbers? Was you son's CD40L reduced or absent? Best Regards, Krystena s Ambassador, United Mitochondrial Disease Foundation http://www.umdf.org/site/c.dnJEKLNqFoG/b.3041929/ Region 4 " Genetics Care Coordination " phone:859-749-7366 fax:859-762-0401 From: bjaazam <bjaazam@...> Subject: Re: CD40L Date: Friday, February 27, 2009, 1:55 PM My son has Hyper IGM. His numbers were in the normal range at birth. From what I understand it does take a few months for the mothers imunity to wear off. My son started IVIG at 3 weeks old and got it every 3 weeks after that. He then had a Bone Marrow Transplant at 6 months of age. He is now doing great. Usually Hyper IGM is genetic. My father had it, 2 cousins, and my nephew. These kids usually dont have the liver issues for several years. They are a lot more likly to have lung and sinus issues. My father had a lot of lung and my cousin has a lot of sinus issues. My son is the first in my family to reveive a bone marrow transplant. The other family have stayed on IVIG or Sub Q for the rest of there life. Good luck and if you have any questions about it feel free to write me and I can send you my phone number. Quote Link to comment Share on other sites More sharing options...
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