ATTENTION MEDIA & OTHERS SEEKING INTERVIEWS!
If you represent a media company, are a student writing a report or anyone interested in interviewing our visitors, please seek permission (see email address at the bottom of the page) before posting your requests or emailing solicitations for any talk show, magazine, thesis, census or other interview on any message board on this site. If not, your posts WILL be removed. Please respect the privacy of our members.
re: My daughter. I'm very worried. Sep. 1st, 2003 5:22pm
Hi Gisella, In order for a child to have CAH, both parents must be carriers. I feel it very unlikely your daughter does have CAH, especially in view of the testing shortly after birth. I do however think it sensible for her to be tested again as even if she doesn't have the condition, she could be a carrier, which would be useful to know, although it should not affect her health, growth etc.
Whereabouts in the UK are you? Where are you receiving your treatment? Dexamethasone was shown to be the least 'favourite' drug for adults with CAH prescribed in the UK (due to it's potency) in a survey recently undertaken by the Society of Endocrinology. I assume you are being treated by an Endocrinologist at a specialised centre? If you are not happy with the care you are receiving, you can ask for a second opinion - it is your right under the NHS Patients Charter!
As to your daughter, Megan rightly points out that untreated CAH can lead to polycystic ovaries, which causes infertility. Also hirsuitism can be a big problem for women. If by an outside chance your daughter does have CAH, she would have a mild form and should only need a small amount of hydrocortisone to balance her hormones. Hydrocortisone is the steroid favoured by paediatric endocrinologists and if she is given the correct dosage (treatment has improved tremendously over the last 10 years and dosages are much smaller than they used to be!), then she should not experience the side effects you mentioned. Chances are she is just naturally tall but a simple blood test would put your mind at ease. Please feel free to e-mail me if you have any questions. Sue@cah.org.uk.
