I can only say that you are right in thinking that something is not right.  My son has CAHypoplasia and had two adrenal crisis before he was diagnosed.  One of these crisis resulted in him having epilepsy which he grew out of but as Anne's experience and too many other families warn us,  the result of a crisis can be far more tragic.

I remember everything being much more difficult to handle in the first three years because coherent conversation is not possible.  We learned at about year three that regular snacks and regular drinking was very important to have a 'normal' day.  Normal was our perception because we do not have any other kids.  We make sure Liam has a snack of some kind every couple of hours and have got him into the habit of drinking often because kids will not drink unless someone gives them a drink.  We approached the snacks like a diabetic would and try to limit it to fruit, fruit bars or low sugar snacks because the object is to keep as constant as possible his blood sugar level so there are no wild ups and downs.

Liam is almost 9 and we have not experienced an adrenal crisis since he was 2 weeks old.  All our children are different and multiple factors contribute to their general well being but the only thing you can do is be pro-active.  The only way we were able to get someone to take note of our concerns was to buy a diary and keep a track record of everything(med times, meals, snacks, problem toimes) to have some proof of a pattern we were concerned about.  I hope you get to the bottom of this quickly, feel free to e-mail me.

 

ShaunP.