To add to this thread:

The other results are not at all what I expected.  Lower than I expected really. 

Blood Spots in Total

18th June

Collected              Result

7.45am                   49
12:00 noon                2
5:00pm                    7
12:00 Midnight           <1
3:00am                   <1
7:45am                   29

So it looks to me that when we dose him at 1.38am, his 17 OHP levels taken at 7.45am read 49 nmol/L.  If he get’s his meds at 3am then they read 29 nmol/L.  Looking at midnight - 3am you’ll see how low 17 OHP is there---even though he has not had any med’s since 5pm. 

Not sure what to make of that, given that he is growing ok and all.  I don’t even know whether to pay any attention to the results for the 5pm, 12:00 midnight and 3am tests or not because we sent the blood spots a day or so later after taking.  We realised we had not posted them off and so posted them on Friday night, but I am not altogether sure if they would have been dealt with until Monday.   We opened them up after finding them and checked if the blood spots still looked fresh and they looked ok so we just sent those in.  Possibly I may repeat those early morning ones before we go to se the Doctor in September--(the week before) just to re-check them and be sure.

It was quite difficult getting blood towards the end of the day and in the early hours of the morning.  Almost like the blood pressure is much less and not a lot of blood at the finger tips at that time.  On the 7.45am ones the blood spots were done relatively quickly from one jab.  The lunchtime one took 2-3 jabs and 15 minutes.   At 5pm it took more jabs and about 25 minutes to get one whole filter paper spot filled.  At midnight it was about 3/4 of an hour even after following the procedures to warm up first and get the blood circulating.  He placed his hands under hot water for a while and shook the arm towards the floor.  Still it took that length of time to get the blood with the gauge needle we had in the lancets.  About ten pricks on different fingers.  Then when we finally got to sleep, no soonner had I fallen asleep and the alarm went off at 2.45am to get him ready for the next blood spot.  I knew it would be even more difficult than the last one so I used a microlancet (little blade) like they use on baby’s heels to jab his finger and even with that it ONLY just about filled a filter paper spot!  He jumped a mile when I did it because he was docile and half asleep, but we had the filter paper done in 2 minutes and we could then get back to sleep after is meds.  The 7.45am one after the meds was fine and he bled freely from one spot again.  Then we dashed over to the clinic/lab to get androstenedione, creatinine and renin etc drawn off--that will take three weeks to come back. 

All of the above should give the Doctor a better idea of what is happening with his meds anyway.  I emailed him, but results of the bone age arn’t back yet, so he will email me if there is any concerns.  Otherwise we see him in September.