PKU has nothing to do with CAH or her message.  She was just referring to the newborn testing which includes PKU testing too.  The levels that she wrote about are elevated (above 10 is elevated).  This child probably has CAH (probably non-salt wasting form or he would be dead by know or there is a miracle going on.... keeping him alive!! or the tests are wrong - which is unlike with TWO tests!! the only false negatives that have been reported are in babies tested too soon after birth - they need to wait 24 or 48 hours - and premature babies).  The difference in the two tests are probably due to the time of day they were taken.... there are hormonal surges in the morning and drops in the later day and evenings. 

I am still surprised that the doctors are not immediately do more testing!! Why isn’t the baby was referred to a doctor that treat chidren with CAH (has other CAH patients - pediatric endocrinologist)? And sooner the better? If the baby has CAH - every day without treatment can cause problems.