Meeting Dr Paley

Let me preface this by saying that I have watched a ton of videos, read a lot of publications and presentations and have spoken to a number of patients and parents of Dr Paley. So I pretty much thought I had an idea about who we would meet. He actually surprised me and was a lot nicer and lot better communicator than I had expected.

This is a picture of Fi during the consultation before she actually fell asleep (it was a long wait).

So Dr Paley spent an hour with us, he first explained the protocol for lengthening and then he answered every single one of my 19 questions and more, in great detail, never making us feel that he had done this a million times. He actually made me feel like he liked parents who ask questions which is a huge bonus in my eyes.

There are a few differences between his approach and the one discussed in Baltimore:
- He prefers doing the arms after the second leg lengthening
- He would do surgery for girls as young as 7 not at 8 as they can be emotionally more mature
- I think he would do internals in the tibiae at the age of 12ish even if the growth plates haven't completely closed

He was very helpful when it came to discussing non-US treatment options mentioning several different options.

He examined Fi very well, by now I can always easily tell how much any doctor knows about HCH just based on what they examine and how and he was clearly very aware of her condition and what needed to be assessed, unlike all orthos we have seen in Ireland.

All in all it was a great visit, we will see him again in 2 years and I think we will then make a more precise plan.

If anyone is interested in my 19 questions, please e-mail me and I am happy to share more detail on a more private forum.