Thought I would start a new thread for this Fio.
Ds is 27 months. He was diagnosed in July last year. He is a spastic diplegic , with high muscle tone in his legs and hips and low tone in his torso, which tends to pull him down and causes his back to curve. He also has a squint, in fact we are going to the hospital next tuesday to book him in for an op to straighten it ( a whole other thread about panic will be coming soon!). He gets weekly pt, has had an assessment for ot, which will start combined with the pt in about 4 weeks. We did have weekly hydrotherapy but ds hated it, so we have cancelled that for the moment. He sees the orthoptist about every 5 weeks at the moment, a neurologist twice a year and a paediatrician 2 - 3 times a year. We are waiting to get funding to have him formally assessed at the Bobath centre in London , which should ahppen in the summer holidays if we are lucky , but there has been a bit of a hitch with that. We could have portage too, but that would mean having virtually no time for us or the others once we have added school runs and hospital appointments into it. He also goes once a week to a mums and tots group at a nursery he might attend next easter.
At home we have daily physio sessions, which include about an hour of gaiters, a gymball session, a standing frame, a bench and an adapted bike. I don't do all of these every day but he has his gaiters and ball session the most. The gaiters have to be daily and the rest I try and rotate so he doesn't get bored. Next week we are seeing wheelchair services because he needs a buggy that can support his legs. At the moment they stick out and his feet turn in, sort of dangling in mid air. Ds will also do Riding for the Disabled when he si 3, because it is very good for children with cp, especially with spasticity, as the rocking movement helps relax the muscles.
In a way it would be a bit of a blessing if her turned out to have EDS too, because it might loosen him up a bit, but doesn't look likely.
So basically I have 4 children, the oldest born with hydrocephalus (now arrested), heart defects (pretty much resolved now) and valproate syndrome, later diagnosed with EDS too. The middle 2 have EDS, and the youngest has CP. It sounds like I'm making it all up doesn't it?!
With regards to your dd and her treatment, it depends what you get at the moment. I found that things shifted up a few gears when they finally diagnosed ds, but that is also because we moved to a place where services were infinitely better. However I do think that a definite diagnosis focuses the doctors and professionals more iyswim. In real life though that's not always possible I know.