~Re: Hopkins or du Pont

[Guest guest]

I have to agree with you Fred - but Patty also has a good point -

We are not fortunate to have ANY dwarfism specialists in New Zealand,

and obviously regular visits to any in the US is just out of the question.

So, to address Patty first - she's right in that if you can get a

doctor who is willing to listen and seek advice from those who do have

extensive dwarfism experience, then that's great.

Also, another good point was if we don't use other doctors (outside

the current specialists) where will other doctors gain that

experience? In our country, most doctors are lucky to see one LP in

their career.

Now, a few years ago, we were fortunate to have some dwarfism

specialists from around the world come to New Zealand. We took

to see Dr MacKenzie and Dr Hurko. I have to say, even if you only see

these doctors once or twice it's worth it.

had an orthopedic surgeon that he saw for a while (there was no

choice about which ortho he could have). He went from the age of 2

till 6 - we have now moved and are getting a new one (eventually).

However this ortho doctor was adament that would need his legs

straightened when he was about 9 or 10. He said he had seen " quite a

few achons in his experience " . He also offered ELL. When I said " no " ,

he said " What about his arms? - For toileting purposes? " Again, we

both said " No, as we know plenty of LP's who manage without the need

for surgery " . Well, he wasn't happy with that.

When had seen Dr MacKenzie and Dr MacKenzie had said there was

no way his legs needed any straightening - they would come right on

their own, we sent the report to our local ortho. He got really bent

out of shape and said in that case he didn't need to see

annually, but to come back in 2 years.

Needless to say, 's legs are pretty straight, we haven't seen

that doctor again, and are waiting for an appointment for a different

one (at Starship in Auckland). The doctor we have been given has a

very good name here. I'm looking forward to meeting him - and seeing

what his attitude towards info from other doctors etc is! I know he

was involved in a successful separation of a set of conjoined twins in

NZ, - I don't doubt his capability, but I'd still like to know how

much LP experience he has!

Caela

Ninja Mum to !

(8, achon, New Zealand)