If you contact Kelly Light there was an article in one of her newsletters for the study in the USA.  I don’t think the consultant would thank me for telling everyone as I have been taken into confidence. Lynn please don’t take this the wrong way - it isn’t quite as simple as you think - the diabetic pumps are brilliant but not available or suitable to everyone.  I was at a conference where the pump idea was discussed - it seems more appropriate to help girls with the excess androgens, however as my son cannot absorb hydrocortisone etc well through the stomach - this has been talked about.  Injecting several times a day has also been suggested but the IM hydro is very painful. However there are many things that can go wrong with the pump too - I wouldn’t get your hopes up too high, yet.

 

Of course slow release and delayed release tablets may help your son - it is far better to take a few tablets that to have a device which has to be worn and put in the skin, reliant on batteries - what rate would you need - what if it malfunctioned? I have just checked other posts, I shall post the links to two pharmacies that make slow release - there are a few adults that use them on the Addison’s Board.   You can have a tablet made of any dose - say take it at 9.00pm and then it is made to kick in at 4.00 am - so basically this would be doing the same as the pump!  If the slow release tablets are unstable as others say (I have never tried this but would but ONLY UNDER a doctors close care, with proper profiles etc) I am sure those who take them would not do well.  The drug itself as far as I know is not changed.

 

However, I doubt it would be possible to mimic the body’s cortisol production - this is what makes CAH so unique. Everyone needs different amounts due to stress alone. However I do agree that we need a better treatment for our children and slow released medication has been talked about for years - but not financially viable!!  If it is not stable then if they can make oestrogen patches - then why not cortisol.  If you are concerned about following the Circadian  rhythm - have you tired the ealy morning dosing that others use on this board?

 

Bellevue Pharmacy wrote the following to me - they were very helpful

 

We can compound the hydrocortisone capsules in any strength and in a timed release capsule, for your son, once we do have the RX. The RX can be faxed in to us at 314-727-2830

 Bellevue Pharmacy Solutions
 1034 S. Brentwood Suite 102
 St. Louis, MO 63117
 314-727-8787
 800-728-0288
 fax 314-727-8787
 fax 800-458-9182

info@bpharmacysolutions.com

http://www.bpharmacysolutions.com/index1.htm

 

also ttp://www.tricarepharmacy.com/index.htm

 

A professor - a metabolic scientist in the USA actually looked into thr slow release tablets for me - and found somewhere in Kentucky that will make it too. However due to powers that be in this country we cannot import it.  It is also available in Canada. I hope this helps