Can't believe we actually got a referal!

[mami2four]

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

Katie

[Grassergirl]

Hi Katie

We were referred to GOSH back in August 2009 and waited AGES for our first appointment.

In the end I was ringing GOSH on a daily basis trying to chase up an appointment - they were claiming not have received our hospital referral. In the end our local hospital faxed through the referral letter on three seperate occasions and eventually we got our appointment. I would give it a couple of months and then start chasing HARD. We were eventually seen in February 2010.

The first visit was very thorough and we were then around three hours with the OT and Physio for assessment. We then went back a couple of weeks later for an exercise progamme to be devised - we weren't given this on the day.

We weren't initally sent on the physio course but at our last rheumotology appointment locally, our consultant (who used to be based at GOSH) said that he would like our daughter to attend and will write suggesting that. He was surprised that it hadn't been suggested before as she is so weak.

I've had a look on these boards for some recent info regarding the physio course plus accommodation but everything seems to be a while ago now.

I hope you're appointment comes through soon!

[mami2four]

Thanks for that info Grassergirl, never considered the possibility of having to go back so soon, its a long way to trudge from here lol

Well I had a lovely suprise this morning to have a GOSH appt letter for the 4th May but now I'm a little concerned as it is for a Dr P's Reumatology clinic next door in the Royal London Hospital For Intergated Medicine, no mention of the hypermobility Clinic or seeing Sue or any other therapist.

I will phone the appts line on Monday to check but has anyone been there recently to know if we are going to the right place?

Thanks
Katie