A while back I requested Ilse's metabolic geneticist to get a level on her 7-dehydrocholesterol, which is the precursor to cholesterol. Our SLOS kiddos have an elevated level of the 7DHC since they are lacking the enzyme to convert some or most of the precursor to cholesterol. Ilse's level was 167 two weeks after birth, *324 last year, and now.... it has gone dramatically down to 137 mg/liter! After some initial confusion regarding the units of measure, we determined (thanks, google) that it really is down! Her cholesterol level is up (101... normal! yay!) and her 7DHC is down. That is exactly what should happen with cholesterol supplementation, a good diet, and lots of hugs and kisses. :)
*The 324 last year had me very worried. Going up so much is not good, especially because there is some thought that this substance is toxic. I'm very thankful it came back down!