In my quest for a diagnosis for Seb, I am just stunned sometimes...

[emkana]

... at how nice people are.

I was having one of those days today where I was getting frustrated with the general slow-ness of the NHS and the complete lack of a sense of urgency - my rational self understands that a diagnosis for Seb is not vital atm, that's why nobody is rushing things, but I just blooming want to know -

anyway rang this university in Germany where they specialize in skeletal dysplasias. Spoke to programme coordinator - as soon as I said who I was and why I was phoning the lovely woman said "yes, no problem, send the x-rays and some photos and we'll discuss at the next possible meeting, which are held weekly"

Why didn't I do this ages ago?

I'm glad you've been stunned by niceness this time

HOw are his chest infections/wheeziness?

It's not the first time I was stunned by niceness either!

The people in America who ruled out Jeune's were lovely as well - did it quickly, in a friendly manner, and for free...

new consultant lovely as well!

And we'll say no more about the old one...

His chest is okay-ish, he def needs all the meds he's on including AB's (which he's been on for nearly three months now), and he's still a bit wheezy at times, and coughing a bit, but he's coping okay.

Consultant was quite positive about it.

Just a shame you have to go abroad to get it. I've ended up talking to people in the States so many times, just to try and get somewhere and get some movement and help.

I agree gess, there is a bit of a theme here of people abroad being more helpful...

but then again the stay in a German hospital was a nightmare, so it's not all good there either.

Part of the problem here is getting hold of the people to talk to. They just don't exist. It is so so so hard to find proper autism experts acting as consultants in the UK. Instead you get a SALT who has had a days training and no hands on experience. Hopeless. I suppose in the states the consultant type people with real expertise are running businesses as well so are used to being accessible.

Did you pay the people in the USA who helped you?

no, well I have paid people in the States (but only after meeting them here), this was freebies- I just meant that they were more contactable and not hidden behind layers (plus they exist!)

Yes here I have found when e/mailing consultants that it doesn't go down well at all.

Even the lung specialist, though very nice, hasn't replied.

Makes me wonder why they bother publishing their e/mail addresses on the internet.