Two weeks to second opinion app at GOSH - pit in stomach

[Sleepstarved]

After waiting since start of Nov for an appointment at GOSH, we are going in two weeks.
It is to try and decide if DD has CP or hypermobility or something else entirely.
Am getting the anxious pit in stomach feeling.
I really want a proper dx so people will stop saying 'all babies develop at different rates, she will get there', but am also scared of getting one in case its bad.
Does it get better once you have a dx or is that really just the start?

I think it both gets better, because you can start to research it, and you know you're not crazy, and is just the start - or rather the end of the beginning. :)

It's the start of the long road to try and do as much as you can for your child.

But congratulations on getting an appointment. That's an important first step.

Good luck.

My take is that a DX is really useful, lets you find out how to help your DC more easily and 'justifies' their difficulties. But it's also tough seeing it in black and white. Many more pros than cons, though, and it doesn't change your child! They are still as lovely as ever.

Also GOSH is amazing. Don't think your usual hospital. If they say they are going to do something, it gets done and in a timely way. They return calls, and act professionally.
Personally, I think it is better to know, manage and control (wherever possible), than not know and constantly worry if there's something you should have done, or be doing.

well, dd2 had been discharged from hospital with full physio and slt follow -up after spending 5 weeks in scbu after a term birth injury. they called it 'developmental delay' for nearly two years, but at 6mos had suggested we apply for dla, which was awarded at high rate.

by about 6 mos i had done enough googling to know she obviously had cp, but no-one was mentioning it. so i waited a year and a half more before i asked the consultant what her dx was. and he said spastic quad cp.

i was, to be honest, completeley elated that finally someone had confirmed that i wasn't bonkers.

it does subside, and then you go and reread the info and start fretting about what it means, but tbh once you know what could happen, you can plan, and push for support to avoid it. and fight for what the child needs with the diagnosis in tow. labels are a great door opener.

so, dd2 has cp, and her dx is athetoid (not spastic quad now - and with cp muscle can change immeasureably over time) and she has quite low tone, with a fair amount of hypermobility. she's 8 now, and makes me laugh every day. so full of life and totally keeps me on my toes working out how she can do whatever it is she decides she wants to do next. currently she wants to learn how to rock climb. presumably cp is your 'bad' dx? it doesn't have to be all that.

good luck with your appointment. sometimes the worst case doesn't seem so bad once you get your head round it. be kind to yourself x

A diagnosis is not a prognosis! Remember that.

In fact, a diagnosis (even if it isn't formal, but simply a list of needs/difficulties) is your child's best chance at the best possible prognosis because you can carefully target their support.

Thank you all.
I think if it is CP it is pretty mild but knowing a bit about CP (my job allows me all kinds of access to doctors) none of the forms of it really ring true for her.
But then hypermobility doesn't completely fit either.
I am annoyed that GOSH has taken so long but am happy that we will eventually see the right person there.
We had a vague dx of mild CP at 7 months from a middle grade doctor at local hospital who just blurted it out and sent us on our way, carry on with physio, see you when she's a year.
Not satifactory if you ask me, hence the GOSH referral.
I really need to know what is going on because in the back of my mind I am worried that it isn't CP or hypermobility and more could have been done between original dx and now.