DD was diagnosed with Turners Syndrome just before Easter.
Many of you were kind enough to post and offer advice and sympathy with me while i came to terms with it.
I have, well sort of. She has undergone a barrage of tests since then and most have come back very well. She has no heart problems that was a huge relief.
She has seen the Growth Hormone specialist and has chosen her device, we are waiting to hear from the drug company.
She is being seen next week to have a GA and 7 teeth out that i am hoping will ease her suffering in that area.
She has a late onset squint and will probably need surgery soon for that.
She is being seen by the ENT people to monitor her (thankfully) sucessful gromits op.
She had a kidney scan yesterday that unfortunately showed a horseshoe shaped kidney, they will keep a close eye on it. It explains her tendency to have lots of bladder infections.
What they are not helping me with is her behaviour! It is so disruptive in the house hold dynamics, she is unable to recognise any level of emotion unless it is extreme. I have to be jumping up and down and shouting for her to realise she is upsetting people. This causes major upset for me and her!
Her short term memory is appaling, i have a 1 year old and she persists in picking him up until he is shrieking. I presume as she has no idea how to gauge his level of distress unless it is at extreme levels she carries on regardless.
This goes for the other 4 boys too. I just hear screams and shouts from them.
She likes routine and to know what is going on, if anything disrups this she gets stroppy and storms off.
She is SO loud and SO strong i can do nothing with her. Talking calmy makes no impact.
The team she is under are great but seem only interested in her medically. Her issues are emotional largely.
Who do i talk to and which department can i stalk I am losely there btw as my sanity trots off down the road.
Ta for reading the long spiel, much appreciated.