Debora,

Do you know what your daughter’s 17-OHP level was before and after the ACTH test?

There is a nomogram/chart written by Dr New which enables you to plot the pre- ACTH 17-OHP numbers and the post ACTH 17-OHP levels and this can help assist  you to know where the CAH person falls, in terms of classifications. http://www.pnas.org/content/vol96/issue22/images/large/pq1992836003.jpeg It is a logarithmic chart, so depending on your maths skills, you may need some assistance in plotting your daughter’s numbers..but it’s quite easy when you know how.

Some doctors are under the misapprehension that because a child is not diagnosed ’til they are beyond infancy that they are non-classical/locah. This is not always true.

Unless the thirst is due to some other cause, I would venture that it is possible your daughter may have some level of Adrenal Insufficiency that once corticosteroid treatment is instituted may help the thirst. Plasma renin levels are often elevated in non-treated Adrenal Insufficiency even if overt mineralocorticoid treatment is not needed. It is possible though that your daughter may have some salt loss, as this is accepted to be common even with Classical Simple Virilisers and I have heard with some LOCAH’s (but unusual). Moreover, regardless of classification, there are variations in the way that each individual can express their symptomology. 

Once your daughter is commenced on corticosteroid medication, yes she should wear some type of Medic-Alert jewellery, as she is in danger of Adrenal crisis due to the fact that she is on replacement cortisol.....unless her dose is very, very low (ie. below physiological replacement dose). When a person takes corticosteroids above a certain dose and particularly long-term - for whatever cause, be it asthma, arthritis, CAH, then they are at risk of turning off the HPA (Hypothalamic Pituitary Adrenal) axis, whereby the body ceases to produce it’s own supply of Cortisol and is totally reliant on the replacement dose. Thus a person in this situation is at risk of Adrenal Crisis and needs additional medication during times of vomiting/diarrhoea/fever/significant injury.

We know it must be a stressful time for you and we hope that your daughter quickly stabilises her levels once she is on medication.