Hi, my DD was diagnosed with CAH in January and we are having all sorts of problems with headaches, aggression etc. We've just been referred to Great Ormond Street at my request as I felt our consultant wasn't experienced in her condition which is very rare. I'd love to hear from anyone here who has any experience/a child with this condition. I did a search and noticed "used2bthin" did but the posts were old so am not sure if she still uses this site.
Also,and it may be connected, she's started having "petit mals" the last 2 weeks accompanied by short term memory loss/confusion. We're not sure if it's connected to the steroids she's on or something totally seperate. She's booked in for an EEG in 2 weeks.
Any advice on either of these issues would be great, many thanksx