Anne-MarieInsulin resistance can be caused by the cortisol levels being too high due to the poor glucose intolerance as you state here Brenda. Eventually it will become a problem if it occurs over too long a period of time. That was my main concern some time ago when Ashley was being over treated. I’m also very cautious lately with us doubling up his doses as we are. I think this is one of the reasons we really need to have the blood spot testing for all children with this condition. They should not have to be exposed too long to over treatment as they are often when normal blood testing can take 1-3 weeks for the results to come back. Or even over exposure to androgens either.
At the best of times folks that "don’t" have CAH develop insulin resistance due to eating a diet too high in refined simple carbs. Snicker bars, lollies, juice with high sugar content and even white rice, or pasta. I would highly recommend keeping refined carbs low with CAH as it will help with the situation. The problem is when the cortisol levels are so high, and you have insulin resistance, you will more than likely have the cravings for simple carbs also. Thats where you would have blood sugar going up and down like a roller coaster most days and I have a;ways said this is why Ashley can be so volatile. Before I educated myself about simple carbs and complex carbs I’d say his moods were more erratic as we would often have simple carbs most days. Since then, I have refined things a lot and it has made a LOT of a difference. I especially would NOT feed these kids high sugary snacks when they are on double and triple meds as this will only exacerbate the problem. They simply dont need them when the cortisol levels are elevated. Initially they need lytes after vomiting, but NOT sugary snacks.
Ashleys handling of his bloods being out this time was not the same as it has been in the past. It was only when we knew they were high that he started to behave oddly. Before that we noticed nothing and I’d say as he is getting older he is more aware of his behaviour and trying to curb it more. He did have a bad case of gyno going on though. Oddly enough about two days before our hosp appt, Chloe teased him about having boobs. Thats the first time I’ve noticed that anyway, but I guess he’s getting older now and that will be a regular symptom of under treatment now. But the giving of double steroid just to get the levels down has me concerned that we are really not anywhere near to getting the protcol right for blood spots either. I’d test more often, but generally only test when I suspect there is a problem. Since new symtoms are always cropping up though, I guess its going to take some time before I get monitoring spot on with them.