Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 : Of course I am sorry that all of this information has come to you too late for Harley, but I am so glad to see your willingness to help others in your area. That is great! I don't blame you for being furious with the medical professionals that you have spoken to. I've said it before, and I'll say it again. It just makes me so mad when a doctor is not willing to open his/her mind to learn something new. ( It is a physicians job to learn all there is to know, and then more as the years pass, and as things change. I think that doctors should have to do some sort of "update seminar" or something every year, and if they didn't go, they wouldn't be allowed to practice. Thanx for the update, , and I hope you will stay in touch! Kendra in Canadawww.plagiocephaly.org/support... ----- Original Message ----- From: Ferris Plagiocephaly Sent: Friday, March 02, 2001 5:00 AM Subject: Update on Harley Hi all,First let me say that I am sorry that I have not yet repsonded to the emails sent directly to me, I have been burrowing away at finding some info and time has gotten away from me! Thank you all for your support during that last week!Well, let me begin.....First the great news for us here in Australia......I have found at least one, possibly two centres that are using helmut therapy for plagio, one in Melbourne and another in Perth. They have been doing it on the quiet for nearly 10 years!The bad news for Harley is that it really has come to late at 20 months of age! I cannot get a referral as they feel he is to old and that head growth has slowed down to a minimum and there would be no improvement. So I am having to come to terms with that and it is not easy!Further to that I am furious with our Professor who was asked directly by myself on more than one occasion whether anyone here is using helmuts and was told 'no' as well as 'get off the internet'. It poses an intersting dilema....this guy is head of the Craniofacial Clinic at the Hospital, either he is ignorant of other hospital's work (in that case he should not be head of the unit) or even worse, he lied to me! So I am off on that tangent as well, I want answers!!!!Back to this Melbourne unit, I have read a recent post from Joanne and have contacted here directly. If anything good has come of this it is to know that treatment is available here for other families, so I suppose that is now my crusade! To try and make sure that no other family has to go through what we went through and leave their child untreated!The other good news is that Orthomerica (represented by a Melbourne Co.) are also prepared to ship helmuts here, we just have to find an orthotist willing to read the guidelines and cast, the casts are then sent to the US for making and then shipped back to Australia, the down side is the cost, a minimum of $AU 6,000. This does make it extremely cost prohibitive to most!So, we have made headway, so to speak!Next, educating the doctors about plagio, ahhh, but that's another story!!!! ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 Wow, - you sure have gathered a wealth of information!! I sure hope in all of that you can find a way to help Harley. Maybe using a band like the STARband which is a little more dynamic than a helmet would be effective for your older child? You are going to be an invaluable resource for future Aussies in the group!!! Best of luck and keep us posted. Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.