So, my 9yr old daughter has just been diagnosed as having mosaic Turner syndrome. She was originally referred to our local Child Development Centre because of her behavioural issues brought up by both her pre-school and then school, coupled with the fact her dad has both Aspergers and ADHD. The Doctor she saw was not concerned that she has either of those conditions but did flag up her small size as a possible concern, she was then referred to the hospital and had bloods taken. I wasn't at all concerned about her size, I'm 5ft nothing myself and most of the women in my family are petite. I wasn't expecting anything to come of the blood test tbh and it really came as a shock to hear that actually yes, there is something.
So next thing is she will need to go back into hospital again and again and again for various scans and tests of heart/kidneys/ears etc and will need to see a genetecist. The Paediatrican told me there is a lot of misinformation out there regarding Turner syndrome and that I should only refer to the Turner syndrome Support Society for advice and support. So far I've not been able to get hold of them at all.
Does anybody have any experience of Mosaic Turner syndrome that they could share with me? I feel completely in the dark, I don't know what questions I should be asking when we meet with the Paediatrican again in a months time. She has asked me to have a think about putting my daughter on growth hormones, but I have no information on which to base any kind of decision, I have no idea what it entails in reality.