Thanks Pattie

[Guest guest]

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!!!!!