Well Lili had her rheumy appt in Cardiff today and even though I had worked myself up for a really bad time and was prepared for a fight(poss even fisty cuffs lol)and I actually came out of there with everything we wanted and a bit extra:dance:
He has now diagnosed her with EDS III and not HMS (I know most people think they are the same anyway)
He is refering her to GOSH (on my suggestion) although he did warn me that we may have trouble getting the funding for her to go but thought it was a good idea as she is extremely bendy and suffers so much pain. But in the mean time he is contacting our local physios as he was unimpressed by the way we have been treated(or NOT treated to be precise) and is also getting our GP to refer her to a local Paediatrician(although Im not quite sure why)
I have looked around the threads but there don't seem to be any recent ones about the waiting times between referals and appts to GOSH does anyone have any ideas? We had to wait almost 6 months to get this rhuemy appt
Also I have 3 other children who all are showing signs would it be a good idea to take them all along? I was thinking it would be but then wasn't sure how we would manage with sleeping arrangements as we are coming from south wales and probably catching the train so would more than likely be better staying the night.
Does almost every child who goes to the clinic get sent on the physio course?
I'm still a little taken aback at how gentle and understanding he was and I didn't even need any of the information I took with me to persude a referal lol