I happened upon some data on the the National Newborn Screening Information System website ( http://www2.uthscsa.edu/nnsis/ )which I had already been made aware of by my wonderful father-in-law but just now realized what some of the information means.
In 2008, 3,338,284 newborns in the United States were screened for CPT II. Of those newborns there is only one confirmed case. The data that I just realized is the category "Newborns presumed with condition." There are 163 in this category and 48 of those are in California. http://www2.uthscsa.edu/nnsis/ReportTotalScreenResults.cfm?testgroup=F&testid=F2&grouplevel=D&typegroup=0
This means there are 162 other babies in the country in the same situation as Sarah. These families with newborns presumed to have the condition are treating there child as though they have a disorder to prevent anything bad from happening but at the same time fearing the day their child will go into crisis yet knowing that this will be the only way to prove their child has CPT II. (I realize that some doctors choose not to treat these kids depending on what their blood levels were so this last paragraph was me speculating - I at least know this is the situation we are in).
I looked at other disorders to see if they had similar information. Cystic Fibrosis 6,442 are presumed to have the condition but only 393 were confirmed. Wow.
This is not ok.
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hi Lisa,
ReplyDeleteThis is all crazy, and you are right, it is not ok! How strange that 48 of them, almost half, are in California.
Thank you for the congrats and the prayers. Things are a bit overwhelming right now! I love following Sarah's story. I am not using facebook anymore, so can you email me your address? lisa.engelman@gmail.com