Thanks to all those parents who have contacted me about the article CARES published regarding my son using the pump. As requested by several parents, I am posting, with my son’s permission of course, his latest 17 OHP, 24 hour profile results, as well as the results of the last 24hour profile taken before he started using the pump.

 

Professor Hindmarsh, likes all my son’s 17 OHP to be under 5 mnol/ls, as this is the optimal level for HIS control (all the rates are tailored to my son’s specific needs).  I thought you may be interested to see how good the control is over the 24 hour period, (a blood sample was taken each hour) how stable the levels are and how they follow the circadian rhythm. I am so grateful for this, as not only is the data so good but his general health is so much better, no more daily headaches, he is still achieving growth we never thought possible, and he no longer has a problem with his weight.

 

By posting this, I hope it somehow helps and brings hope for better treatment, for all with CAH.

 

The before pump results were done on an oral dose of about 4 times his current dose, he was taking hydro 6 times a day and the results were mostly in the hundreds!!

 

Kathy G 

 

Clock Time (hr)	17OHP (nmol/l) August 2006 On Pump	17OHP (nmol/l) BEFORE Pump October 2004
10.00	3.0	447
11.00	2.5	414
12.00	2.5	397
13.00	2.6	351
14.00	2.7	280
15.00	2.6	211
16.00	3.0	326
17.00	3.0	223
18.00	3.0	170
19.00	3.0	156
20.00	3.8	143
21.00	3.8	101
22.00	3.8	64
23.00	3.6	38
24.00	3.6	23
01.00	3.5	17.9
02.00	3.7	13.7
03.00	4.0	65
04.00	4.0	50
05.00	4.5	398
06.00	4.5	302
07.00	4.4	479
08.00	4.0	490
09.00	4.4	244