Ironically, Ashley never had blood work done in the AM for quite some time...somehow it did not seem to matter what time it was done--morning or afternoon--not preference was stated.  We knew no better at the time..had I known what I know now, I would certainly have insisted on them doing the bloods more consistently.   It is only since we made sure it is done at one time on a regular basis and in the AM or not at all that he is in good control and had good growth really.  Especially so since they started doing ALL the blood work that they should...we have 17 OHP blood spot testing here now and got our kit in December..so we will start to practise this week as we were instructed to.  It takes 3 days for the results to be sent and they will send to the consultant and us also.  From there on out we will receive phone calls when the tests are out and be given instructions by phone about what to do with med’s.  Bloods will be taken before each dose in the day eventually which will pinpoint with more accuracy what each dose in the day is doing for him.  We were given the opportunity to buy a Softclix pen to do the finger pricking with for $20 NZ.  Also a pile of filter paper cards.  When you run out you put an order in for more and they are sent.  On each card there are four filter paper spot areas, though for each test in the day you just use one of those spots and date and time it and send it back seperately. 

On the day we saw the Metabolic nurse, she took one blood spot test and the results came back later at simply number "2" which is not clear to me what that means yet as apparently the reference ranges are different to blood drawn off with a needle.  The pen is good and Ashley was taught hoe to do that himself and how to milk the blood down his arm to get a substantial drop on the filter paper.  Quite interesting actually.  Each spot you fill must be saturated in blood and apparently you need to develop the knack of doing it.  We still have three monthly bloods and 17 OHP drawn off then apparently also with androstenedione and renin etc.   I’ll let you know how we go with it. 

Regards,

Anne-Marie