Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Pattie, I want to tell you THANK YOU for all the info on SDS. Blake's Endocrinologist & Pediatrician as well as the Immuno & Hem/Onc Drs. have all made the decision that Blake DOES Have SDS!!! Such a Dire feeling comes over you when you hear devastating news. In talking with Blake's Home health nurse, she said she did research of SDS & SDBS & Blake does meet all criteria. I have know this but it still does not make anything better at the moment. We also were told we have a heads up because he is already receiving IVIG & he actually is getting more than what they would give for SDS(Dr's words). So we will be doing this as a lifetime commitment not only for CIVD but the SDS as well!!! I can say, you are very thorough in all the files. & admire you because you have 2 of these Special Children & you have done a great job in helping me come to terms with it!!!! Blake will start the IV Pamidronate(Aredia). he will be in patient April 14-16. If no problems, he may get to go home the night of the 16th. After the first " round " he will get it every 16 weeks for at least 5 yrs. with Bone density being done every 6-12 months to see what progress is being made Once again, Thank You!!!! Mom to Blake, 14.......CVID with Complete T-Cell Dysfunction, Several other Issues.... http://www3.caringbridge.org/sc/blakester Come & Experience the Greatest Adventure of MY Lifetime!!!!! Quote Link to comment Share on other sites More sharing options...
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