Guest guest Posted September 4, 2001 Report Share Posted September 4, 2001 nna, Thanks for the heads up. If you get to view the show I hope you will give us a review of how it went and what kind of information was presented. I hope it will be very good and informative - this could be a great step forward for promoting awareness of plagiocephaly in Australia. Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2001 Report Share Posted September 4, 2001 Hi Everyone Just thought I would let you all know that tmrw (WED) there will be a story airing on Channel 9 Brisbane at 5.30pm on Brisbane Extra. I believe that the story is about helmets for Plagio - I am not quite sure as I only saw the end of the promo - a baby on tv with a helmet on its head. I will know more in the morning when a call channel 9 - as most of you are in the USA or interstate in Australia brisbane extra has a website - the story should be under the current show heading - it is 11.50 pm her on tuesday now (just to give you all an idea) so anytime after about 6.30pm Queensland time Wednesday should enable you to view it on the web if you are interested. the web address is www.extraonline.com.au Regards nna Skye's mum Brisbane Australia _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2001 Report Share Posted September 4, 2001 Thats great nna! I hope it's a good story. Plagio & the STARband had a story on " Inside Edition " here in the U.S. a couple mos ago, a lot of parents didn't like it, I wasn't able to see it. I hope they do a good job covering all the details regarding plagio & the benefits of helmet therapy. Let us know how it is. Debbie Abby'smom DOCgrad 6/22/01 MI > Hi Everyone > > Just thought I would let you all know that tmrw (WED) there will be a story > airing on Channel 9 Brisbane at 5.30pm on Brisbane Extra. I believe that > the story is about helmets for Plagio - I am not quite sure as I only saw > the end of the promo - a baby on tv with a helmet on its head. > > I will know more in the morning when a call channel 9 - as most of you are > in the USA or interstate in Australia brisbane extra has a website - the > story should be under the current show heading - it is 11.50 pm her on > tuesday now (just to give you all an idea) so anytime after about 6.30pm > Queensland time Wednesday should enable you to view it on the web if you are > interested. > the web address is www.extraonline.com.au > > > Regards > nna > Skye's mum > Brisbane Australia > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2001 Report Share Posted September 4, 2001 na, Sounds like it is going to be a good story! I hope you will tell us all about it after it airs. Very cool that they might post the address for our group! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 Hi All I spoke to the TV station this morning and got a little bit of info - they have spoken to Dr Lewandowski - the specialist I am seeing - also to some parents and to GB Orthopeadics - the company that make the helmets in Brisbane - they refer to plagio in the story as " Flat head Syndrome " and advised me that the reporter has said in the story that the condition requires urgent medical attention!!! The other thing is the show want to know the address for the internet support group I told them about - so they can put it in the story aswell for all those parents that have no idea where to go for support - do I just give them " Plagiocephaly ??? Regards nna >From: marcisch@... >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: helmet story >Date: Tue, 4 Sep 2001 10:07:15 EDT > >nna, > >Thanks for the heads up. If you get to view the show I hope you will give >us >a review of how it went and what kind of information was presented. I hope >it >will be very good and informative - this could be a great step forward for >promoting awareness of plagiocephaly in Australia. > >Marci (Mom to ) >Oklahoma _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 nna, That is great news that the word is getting out about plagio in Australia. Its even better that it is being reported as needing urgent medical attention! Hopefully this will make it easier for you and countless other parents in Australia who are finding it difficult getting the help they need. The link to our website is http://www./group/plagiocephaly You could always give them the link to http://www.plagiocephaly.org/support There is a connection to our group there. Great job in informing them of this group! You'll be helping so many people! Niki Kaylie & Danny (STAR grads) Phila., PA > Hi All > > I spoke to the TV station this morning and got a little bit of info - they > have spoken to Dr Lewandowski - the specialist I am seeing - also to some > parents and to GB Orthopeadics - the company that make the helmets in > Brisbane - they refer to plagio in the story as " Flat head Syndrome " and > advised me that the reporter has said in the story that the condition > requires urgent medical attention!!! > The other thing is the show want to know the address for the internet > support group I told them about - so they can put it in the story aswell > for all those parents that have no idea where to go for support - do I just > give them " Plagiocephaly@y...??? > > Regards > nna > > > >From: marcisch@a... > >Reply-Plagiocephaly@y... > >Plagiocephaly@y... > >Subject: Re: helmet story > >Date: Tue, 4 Sep 2001 10:07:15 EDT > > > >nna, > > > >Thanks for the heads up. If you get to view the show I hope you will give > >us > >a review of how it went and what kind of information was presented. I hope > >it > >will be very good and informative - this could be a great step forward for > >promoting awareness of plagiocephaly in Australia. > > > >Marci (Mom to ) > >Oklahoma > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 do I just give them "Plagiocephaly ??? nna: The address for this group is plagiocephaly If it takes one to the homepage, simply type "plagiocephaly" into the search box! Thanx!! Kendra in Canadafor information on positional plagiocephaly, visitwww.plagiocephaly.org/supportwww./group/plagiocephaly.. ----- Original Message ----- From: Dale & nna Adcock Plagiocephaly Sent: Tuesday, September 04, 2001 4:40 PM Subject: Re: helmet story Hi AllI spoke to the TV station this morning and got a little bit of info - they have spoken to Dr Lewandowski - the specialist I am seeing - also to some parents and to GB Orthopeadics - the company that make the helmets in Brisbane - they refer to plagio in the story as "Flat head Syndrome" and advised me that the reporter has said in the story that the condition requires urgent medical attention!!!The other thing is the show want to know the address for the internet support group I told them about - so they can put it in the story aswell for all those parents that have no idea where to go for support - do I just give them "Plagiocephaly ???Regardsnna>From: marcisch@...>Reply-Plagiocephaly >Plagiocephaly >Subject: Re: helmet story>Date: Tue, 4 Sep 2001 10:07:15 EDT>>nna,>>Thanks for the heads up. If you get to view the show I hope you will give >us>a review of how it went and what kind of information was presented. I hope >it>will be very good and informative - this could be a great step forward for>promoting awareness of plagiocephaly in Australia.>>Marci (Mom to )>Oklahoma_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.aspFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 Thanks nna I will try to check it out ... all the best for Friday's appointment. Joanne > Hi Everyone > > Just thought I would let you all know that tmrw (WED) there will be a story > airing on Channel 9 Brisbane at 5.30pm on Brisbane Extra. I believe that > the story is about helmets for Plagio - I am not quite sure as I only saw > the end of the promo - a baby on tv with a helmet on its head. > > I will know more in the morning when a call channel 9 - as most of you are > in the USA or interstate in Australia brisbane extra has a website - the > story should be under the current show heading - it is 11.50 pm her on > tuesday now (just to give you all an idea) so anytime after about 6.30pm > Queensland time Wednesday should enable you to view it on the web if you are > interested. > the web address is www.extraonline.com.au > > > Regards > nna > Skye's mum > Brisbane Australia > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 Hi Kendra Unfortunately I didn't read your email before the tv station contacted me back - will people still be able to send an email directly to Plagiocephaly ?? if they are not a member of the group because this is the email address that the tv station has for the show Regards nna >From: Kendra <p-nutsmum@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: helmet story >Date: Tue, 04 Sep 2001 18:42:25 -0700 > >do I just >give them " Plagiocephaly ??? > > >nna: >The address for this group is plagiocephaly >If it takes one to the homepage, simply type " plagiocephaly " >into the search box! >Thanx!! >Kendra in Canada >for information on positional plagiocephaly, visit >www.plagiocephaly.org/support >www./group/plagiocephaly >. >. > ----- Original Message ----- > From: Dale & nna Adcock > Plagiocephaly > Sent: Tuesday, September 04, 2001 4:40 PM > Subject: Re: helmet story > > > Hi All > > I spoke to the TV station this morning and got a little bit of info - >they > have spoken to Dr Lewandowski - the specialist I am seeing - also to >some > parents and to GB Orthopeadics - the company that make the helmets in > Brisbane - they refer to plagio in the story as " Flat head Syndrome " and > advised me that the reporter has said in the story that the condition > requires urgent medical attention!!! > The other thing is the show want to know the address for the internet > support group I told them about - so they can put it in the story aswell > for all those parents that have no idea where to go for support - do I >just > give them " Plagiocephaly ??? > > Regards > nna > > > >From: marcisch@... > >Reply-Plagiocephaly > >Plagiocephaly > >Subject: Re: helmet story > >Date: Tue, 4 Sep 2001 10:07:15 EDT > > > >nna, > > > >Thanks for the heads up. If you get to view the show I hope you will >give > >us > >a review of how it went and what kind of information was presented. I >hope > >it > >will be very good and informative - this could be a great step forward >for > >promoting awareness of plagiocephaly in Australia. > > > >Marci (Mom to ) > >Oklahoma > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 nna: The messages will not be able to get thru, BUT does send a reply giving instructions on how to join the group! I did a test, and the message they send back is as follows: The email address used to send your message is not subscribed to this group. If you are a member of this group, please be aware that you may only send messages to this group using the email address(es) you have registered with . allows you to send messages using the email address you originally used to register, or an alternate email address you specify in your personal settings. If you would like to subscribe to this group:1. visit Plagiocephaly/join-OR-2. send email to Plagiocephaly-subscribe If you would like to specify an alternate email address:1. visit myprefs?edit=22. type your alternate email address in the area labeled "Alternate posting addresses".3. click the "Save Changes" button4. wait approximately 10 minutes for the change to take effect After you follow these steps, you will be able to send messages to all your groups using this alternate email address. For further assistance, please email support or visit http://help./help/us/groups People shouldn't have a problem getting in. Thanx for telling Australia about us!! * smile!* Kendra in Canadafor information on positional plagiocephaly, visitwww.plagiocephaly.org/supportwww./group/plagiocephaly.. ----- Original Message ----- From: Dale & nna Adcock Plagiocephaly Sent: Tuesday, September 04, 2001 7:48 PM Subject: Re: helmet story Hi KendraUnfortunately I didn't read your email before the tv station contacted me back - will people still be able to send an email directly to Plagiocephaly ?? if they are not a member of the group because this is the email address that the tv station has for the showRegardsnna>From: Kendra <p-nutsmum@...>>Reply-Plagiocephaly >Plagiocephaly >Subject: Re: helmet story>Date: Tue, 04 Sep 2001 18:42:25 -0700>>do I just>give them "Plagiocephaly ???>>>nna:>The address for this group is plagiocephaly>If it takes one to the homepage, simply type "plagiocephaly" >into the search box!>Thanx!!>Kendra in Canada>for information on positional plagiocephaly, visit>www.plagiocephaly.org/support>www./group/plagiocephaly>.>.> ----- Original Message -----> From: Dale & nna Adcock> Plagiocephaly > Sent: Tuesday, September 04, 2001 4:40 PM> Subject: Re: helmet story>>> Hi All>> I spoke to the TV station this morning and got a little bit of info - >they> have spoken to Dr Lewandowski - the specialist I am seeing - also to >some> parents and to GB Orthopeadics - the company that make the helmets in> Brisbane - they refer to plagio in the story as "Flat head Syndrome" and> advised me that the reporter has said in the story that the condition> requires urgent medical attention!!!> The other thing is the show want to know the address for the internet> support group I told them about - so they can put it in the story aswell> for all those parents that have no idea where to go for support - do I >just> give them "Plagiocephaly ???>> Regards> nna>>> >From: marcisch@...> >Reply-Plagiocephaly > >Plagiocephaly > >Subject: Re: helmet story> >Date: Tue, 4 Sep 2001 10:07:15 EDT> >> >nna,> >> >Thanks for the heads up. If you get to view the show I hope you will >give> >us> >a review of how it went and what kind of information was presented. I >hope> >it> >will be very good and informative - this could be a great step forward >for> >promoting awareness of plagiocephaly in Australia.> >> >Marci (Mom to )> >Oklahoma>>> _________________________________________________________________> Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Ok, I wrote this on Tuesday night, I have no idea why it is showing up just now. Gotta love Niki > > Hi All > > > > I spoke to the TV station this morning and got a little bit of > info - they > > have spoken to Dr Lewandowski - the specialist I am seeing - also > to some > > parents and to GB Orthopeadics - the company that make the helmets > in > > Brisbane - they refer to plagio in the story as " Flat head > Syndrome " and > > advised me that the reporter has said in the story that the > condition > > requires urgent medical attention!!! > > The other thing is the show want to know the address for the > internet > > support group I told them about - so they can put it in the story > aswell > > for all those parents that have no idea where to go for support - > do I just > > give them " Plagiocephaly@y...??? > > > > Regards > > nna > > > > > > >From: marcisch@a... > > >Reply-Plagiocephaly@y... > > >Plagiocephaly@y... > > >Subject: Re: helmet story > > >Date: Tue, 4 Sep 2001 10:07:15 EDT > > > > > >nna, > > > > > >Thanks for the heads up. If you get to view the show I hope you > will give > > >us > > >a review of how it went and what kind of information was > presented. I hope > > >it > > >will be very good and informative - this could be a great step > forward for > > >promoting awareness of plagiocephaly in Australia. > > > > > >Marci (Mom to ) > > >Oklahoma > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at > http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 > That is great news that the word is getting out about plagio in > Australia. Its even better that it is being reported as needing > urgent medical attention! Hopefully this will make it easier for you > and countless other parents in Australia who are finding it difficult > getting the help they need. I think we are starting to make some progress here in Australia, but I must say that I wasn't too impressed with some of the things in the Brisbane article. Firstly a doctor like Dr.Lewandowski should be calling it deformational plagiocephaly, not flat head syndrome. Also a baby of 8 months will need a helmet for much longer than 6 weeks. I like to think awareness here will be through a plagio story, its affect on babies and the long term outlook for kids with plagio. Not a story about making helmets. I disagree that this condtion needs urgent attention, that is simply incorrect. On the other hand, early fusion of the sutures is a different story and does need urgent attention. My fear for aussie parents is that the uneducation of GP's and Peds here will mean that babies with plagio caused by early suture fusing will not be picked up and the baby will suffer unnecessarily. Well, its a start and I hope to be able to give you all more goods news about raising the awareness of plagio in Australia. I am now in the process of trying to get deformational plagio discussed at all Pre-Natal classes around Australia. I am confident that if I succeed in this that it will help many other aussie parents and their babies. I'll keep you all posted, Simon Adelaide, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Good luck Simon!! Education is the key. Marci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 In a message dated 09/07/2001 6:21:17 AM Central Daylight Time, icu4urmyhone@... writes: << BUT plagio does require urgent attention - it was confirmed to me today by 6 different Dr's that my daughters condition will NEVER!!!! round out on its own or look normal - however if we has gotten treatment earlier correction to a greater level would have been achieved - but now because the Ped we saw didn't think it required urgent treatment she will ALWAYS have a noticable deformity. The other thing is if parents do not have their childrens flat heads looked at early - how on God's earth will they ever be diagnosed early enough if it is Cranio. Just food for thought really and logic! >> nna, What you say here makes very good sense to me. I also feel (in my OPINION!!) that plagio requires urgent attention. You are correct - the dr can't diagnose cranio if you don't take them in to be checked for the cause of the flatness!! Of course, the opinions vary on the medical complications that can arise from plagio. Some specialists feel it is only cosmetic others believe that other medical complications can arise. My neurosurgeon is also involved in some long-term and comprehensive studies of plagio (he is at a University hospital - big time into research!!) and he feels that TMJ, speech and language delays, other developmental delays, vision problems, etc can result from untreated plagio. I think it does require urgent medical attention and then you can see what your treatment options are from there - helmet, repositioning, PT, etc. I was also glad to hear that the dr called it by its name even though the news people decided to opt for " flat head syndrome " *groan* anything for the story!! Thanks for sharing that update! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Hi Simon I have just rewatched the show - the info on the website is not the whole story. First of all (as I saw the show) Dr Lewandowski DID NOT call it Flat head - the reporters chose to do that because it would gain more public attention (I am aware of this as I have spoken to Lexie Hamilton - the reporter on Thursday morning). Secondly the babies in the story both had mild plagio and thus only needed treatment for 8 weeks. Once again it depends on the severity!! To fully understand the context you would need to see the program not just read the web page!!!! And one other thing - (please don't take this as an attack) BUT plagio does require urgent attention - it was confirmed to me today by 6 different Dr's that my daughters condition will NEVER!!!! round out on its own or look normal - however if we has gotten treatment earlier correction to a greater level would have been achieved - but now because the Ped we saw didn't think it required urgent treatment she will ALWAYS have a noticable deformity. The other thing is if parents do not have their childrens flat heads looked at early - how on God's earth will they ever be diagnosed early enough if it is Cranio. Just food for thought really and logic! Regards nna >From: classic_celica@... >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: helmet story >Date: Fri, 07 Sep 2001 08:44:29 -0000 > > > > That is great news that the word is getting out about plagio in > > Australia. Its even better that it is being reported as needing > > urgent medical attention! Hopefully this will make it easier for >you > > and countless other parents in Australia who are finding it >difficult > > getting the help they need. > >I think we are starting to make some progress here in Australia, but >I must say that I wasn't too impressed with some of the things in the >Brisbane article. Firstly a doctor like Dr.Lewandowski should be >calling it deformational plagiocephaly, not flat head syndrome. Also >a baby of 8 months will need a helmet for much longer than 6 weeks. > >I like to think awareness here will be through a plagio story, its >affect on babies and the long term outlook for kids with plagio. Not >a story about making helmets. > >I disagree that this condtion needs urgent attention, that is simply >incorrect. On the other hand, early fusion of the sutures is a >different story and does need urgent attention. My fear for aussie >parents is that the uneducation of GP's and Peds here will mean that >babies with plagio caused by early suture fusing will not be picked >up and the baby will suffer unnecessarily. > >Well, its a start and I hope to be able to give you all more goods >news about raising the awareness of plagio in Australia. > >I am now in the process of trying to get deformational plagio >discussed at all Pre-Natal classes around Australia. I am confident >that if I succeed in this that it will help many other aussie parents >and their babies. > >I'll keep you all posted, > >Simon >Adelaide, Australia > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 nna, Fair enough but don't you think people searching the net for info will find this information misleading?? Thats is my point. I think you have missed my point altogether. I agree that awareness needs to be raised to ensure that kids with cranio are detected early and receive quick treatment. Thats the whole point behind the push to have Peds and GP's made more aware of plagio. Also I agree that deformation plagio will NEVER round out perfectly. That is a fact. However, I have a report from Dr. about several kids that have moderate plagio. The report clearly illustrates the effect of deformational plagio over a long period of time. The pictures of these kids heads that have been taken from a baby up until they are around 10 years old. These pictures do in fact show that although the head isn't ever going to be " perfect " it will get to a point where it is barely noticeable and therefore one needs to question the use of helmets for mild to moderate plagio. I don't want to argue with you over the use of helmets. The main thing is that as parents we have enough information so we feel we have made the right desicion for our kids. In Jades case I am happy to let time look after her plagio. No doubt every case is different and the use of helmets etc etc is personal choice. Finally, the logic your referring to again is about making an informed desicion by both doctors and parents. Visting doctors that know and understand plagio is critical. But the story is talking about deformation plagio and saying that it needs urgent attention. I don't agree with that. Cranio on the other hand does need urgent attention. The urgency in terms of deformational plagio is only to ensure that you as a parent can decide whether to band or not befoer its too late. I have a report here that has some very good information and pictures of kids with plagio and the long term affects of plagio. I am thinking of making a web site and putting it on line to help others. Simon Adelaide, Australia To fully > understand the context you would need to see the program not just read the > web page!!!! > And one other thing - (please don't take this as an attack) BUT plagio does > require urgent attention - it was confirmed to me today by 6 different Dr's > that my daughters condition will NEVER!!!! round out on its own or look > normal - > The other thing is if parents do not have their childrens flat heads looked > at early - how on God's earth will they ever be diagnosed early enough if it > is Cranio. Just food for thought really and logic! > > Regards > nna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Hi Simon I respect your opinion however I think that this is one issue that we should agree to disagree on as we are of two totally different trains of thought and opinion. This board is not really the place to be undertaking this debate because we will never come to a compromise with our ideas. Have a great weekend regards nna >From: classic_celica@... >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: helmet story >Date: Sun, 09 Sep 2001 05:11:59 -0000 > >nna, >Fair enough but don't you think people searching the net for info >will find this information misleading?? Thats is my point. > >I think you have missed my point altogether. I agree that awareness >needs to be raised to ensure that kids with cranio are detected early >and receive quick treatment. Thats the whole point behind the push to >have Peds and GP's made more aware of plagio. > >Also I agree that deformation plagio will NEVER round out perfectly. >That is a fact. >However, I have a report from Dr. about several kids that have >moderate plagio. The report clearly illustrates the effect of >deformational plagio over a long period of time. The pictures of >these kids heads that have been taken from a baby up until they are >around 10 years old. These pictures do in fact show that although the >head isn't ever going to be " perfect " it will get to a point where it >is barely noticeable and therefore one needs to question the use of >helmets for mild to moderate plagio. > >I don't want to argue with you over the use of helmets. The main >thing is that as parents we have enough information so we feel we >have made the right desicion for our kids. In Jades case I am happy >to let time look after her plagio. No doubt every case is different >and the use of helmets etc etc is personal choice. > >Finally, the logic your referring to again is about making an >informed desicion by both doctors and parents. Visting doctors that >know and understand plagio is critical. But the story is talking >about deformation plagio and saying that it needs urgent attention. I >don't agree with that. Cranio on the other hand does need urgent >attention. >The urgency in terms of deformational plagio is only to ensure that >you as a parent can decide whether to band or not befoer its too late. > >I have a report here that has some very good information and pictures >of kids with plagio and the long term affects of plagio. I am >thinking of making a web site and putting it on line to help others. > >Simon >Adelaide, Australia > >To fully > > understand the context you would need to see the program not just >read the > > web page!!!! > > And one other thing - (please don't take this as an attack) BUT >plagio does > > require urgent attention - it was confirmed to me today by 6 >different Dr's > > that my daughters condition will NEVER!!!! round out on its own or >look > > normal - > > The other thing is if parents do not have their childrens flat >heads looked > > at early - how on God's earth will they ever be diagnosed early >enough if it > > is Cranio. Just food for thought really and logic! > > > > Regards > > nna > > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 nna, I am glad you have made a desicion your happy with, thats the main thing. The whole issue here that needs to be pushed in Australia is to get Ped's and GP's educated on plagio. Thats what I want to happen in conjunction with information given to all parents at Pre-natal classes before they babies are even born. Whether we use a helmet or not is a personal choice and is not worth debating. Every case is different and as long as each parent makes an informed desicion then something has been achieved. I don't want to hear about any other parents getting the run around like we have both been through. Talk to ya soon, Simon > Hi Simon > > I respect your opinion however I think that this is one issue that we should > agree to disagree on as we are of two totally different trains of thought > and opinion. This board is not really the place to be undertaking this > debate because we will never come to a compromise with our ideas. > > Have a great weekend > regards > nna > > > >From: classic_celica@y... > >Reply-Plagiocephaly@y... > >Plagiocephaly@y... > >Subject: Re: helmet story > >Date: Sun, 09 Sep 2001 05:11:59 -0000 > > > >nna, > >Fair enough but don't you think people searching the net for info > >will find this information misleading?? Thats is my point. > > > >I think you have missed my point altogether. I agree that awareness > >needs to be raised to ensure that kids with cranio are detected early > >and receive quick treatment. Thats the whole point behind the push to > >have Peds and GP's made more aware of plagio. > > > >Also I agree that deformation plagio will NEVER round out perfectly. > >That is a fact. > >However, I have a report from Dr. about several kids that have > >moderate plagio. The report clearly illustrates the effect of > >deformational plagio over a long period of time. The pictures of > >these kids heads that have been taken from a baby up until they are > >around 10 years old. These pictures do in fact show that although the > >head isn't ever going to be " perfect " it will get to a point where it > >is barely noticeable and therefore one needs to question the use of > >helmets for mild to moderate plagio. > > > >I don't want to argue with you over the use of helmets. The main > >thing is that as parents we have enough information so we feel we > >have made the right desicion for our kids. In Jades case I am happy > >to let time look after her plagio. No doubt every case is different > >and the use of helmets etc etc is personal choice. > > > >Finally, the logic your referring to again is about making an > >informed desicion by both doctors and parents. Visting doctors that > >know and understand plagio is critical. But the story is talking > >about deformation plagio and saying that it needs urgent attention. I > >don't agree with that. Cranio on the other hand does need urgent > >attention. > >The urgency in terms of deformational plagio is only to ensure that > >you as a parent can decide whether to band or not befoer its too late. > > > >I have a report here that has some very good information and pictures > >of kids with plagio and the long term affects of plagio. I am > >thinking of making a web site and putting it on line to help others. > > > >Simon > >Adelaide, Australia > > > >To fully > > > understand the context you would need to see the program not just > >read the > > > web page!!!! > > > And one other thing - (please don't take this as an attack) BUT > >plagio does > > > require urgent attention - it was confirmed to me today by 6 > >different Dr's > > > that my daughters condition will NEVER!!!! round out on its own or > >look > > > normal - > > > The other thing is if parents do not have their childrens flat > >heads looked > > > at early - how on God's earth will they ever be diagnosed early > >enough if it > > > is Cranio. Just food for thought really and logic! > > > > > > Regards > > > nna > > > > > > > > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 I have a report here that has some very good information and pictures of kids with plagio and the long term affects of plagio. I am thinking of making a web site and putting it on line to help others. Simon That would be great if you could create a website with that information. It sounds like it would be VERY helpful to us parents. Debbie Abby's mom DOCgrad 6/22/01 Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Very Good idea Debbie! And Simon if you do decide to do a website please put a link to Leigha's page and CAPPS along with this positional plagio board so you can send parents that need to know about cranio mine and CAPPS way. Before you decide yay or nay you can check out Leigha's page with is always a work in progress.. http://www.geocities.com/leighasmygirl/Leigha-CS.html A wonderful idea if I ever heard of one Debbie ~ You Go GIRLIE!!!! Hugs, Mel > I have a report here that has some very good information and pictures > of kids with plagio and the long term affects of plagio. I am > thinking of making a web site and putting it on line to help others. > > Simon > > That would be great if you could create a website with that > information. It sounds like it would be VERY helpful to us parents. > > Debbie Abby's mom DOCgrad 6/22/01 > Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Simon: I would be very interested in seeing this report. If you would like to send it to my private email, please do! p-nutsmum@... Thanx! Kendra in Canadawww.plagiocephaly.org/support/Plagiocephaly/joinhttp://geocities.com/kendraandhanna/ ----- Original Message ----- From: classic_celica@... Plagiocephaly Sent: Saturday, September 08, 2001 11:11 PM Subject: Re: helmet story nna,Fair enough but don't you think people searching the net for info will find this information misleading?? Thats is my point.I think you have missed my point altogether. I agree that awareness needs to be raised to ensure that kids with cranio are detected early and receive quick treatment. Thats the whole point behind the push to have Peds and GP's made more aware of plagio.Also I agree that deformation plagio will NEVER round out perfectly. That is a fact. However, I have a report from Dr. about several kids that have moderate plagio. The report clearly illustrates the effect of deformational plagio over a long period of time. The pictures of these kids heads that have been taken from a baby up until they are around 10 years old. These pictures do in fact show that although the head isn't ever going to be "perfect" it will get to a point where it is barely noticeable and therefore one needs to question the use of helmets for mild to moderate plagio.I don't want to argue with you over the use of helmets. The main thing is that as parents we have enough information so we feel we have made the right desicion for our kids. In Jades case I am happy to let time look after her plagio. No doubt every case is different and the use of helmets etc etc is personal choice.Finally, the logic your referring to again is about making an informed desicion by both doctors and parents. Visting doctors that know and understand plagio is critical. But the story is talking about deformation plagio and saying that it needs urgent attention. I don't agree with that. Cranio on the other hand does need urgent attention.The urgency in terms of deformational plagio is only to ensure that you as a parent can decide whether to band or not befoer its too late.I have a report here that has some very good information and pictures of kids with plagio and the long term affects of plagio. I am thinking of making a web site and putting it on line to help others.SimonAdelaide, AustraliaTo fully > understand the context you would need to see the program not just read the > web page!!!!> And one other thing - (please don't take this as an attack) BUT plagio does > require urgent attention - it was confirmed to me today by 6 different Dr's > that my daughters condition will NEVER!!!! round out on its own or look > normal - > The other thing is if parents do not have their childrens flat heads looked > at early - how on God's earth will they ever be diagnosed early enough if it > is Cranio. Just food for thought really and logic!> > Regards> nna> For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Kendra, I only have a hard copy of this report. I haven't tried to scan the pics and not sure how good they will come out. Maybe I should send you a hard copy? Simon > Simon: > I would be very interested in seeing this report. If you would like to send it to my private email, please do! > p-nutsmum@s... > Thanx! > Kendra in Canada > www.plagiocephaly.org/support/ > Plagiocephaly/join > http://geocities.com/kendraandhanna/ > ----- Original Message ----- > From: classic_celica@y... > Plagiocephaly@y... > Sent: Saturday, September 08, 2001 11:11 PM > Subject: Re: helmet story > > > nna, > Fair enough but don't you think people searching the net for info > will find this information misleading?? Thats is my point. > > I think you have missed my point altogether. I agree that awareness > needs to be raised to ensure that kids with cranio are detected early > and receive quick treatment. Thats the whole point behind the push to > have Peds and GP's made more aware of plagio. > > Also I agree that deformation plagio will NEVER round out perfectly. > That is a fact. > However, I have a report from Dr. about several kids that have > moderate plagio. The report clearly illustrates the effect of > deformational plagio over a long period of time. The pictures of > these kids heads that have been taken from a baby up until they are > around 10 years old. These pictures do in fact show that although the > head isn't ever going to be " perfect " it will get to a point where it > is barely noticeable and therefore one needs to question the use of > helmets for mild to moderate plagio. > > I don't want to argue with you over the use of helmets. The main > thing is that as parents we have enough information so we feel we > have made the right desicion for our kids. In Jades case I am happy > to let time look after her plagio. No doubt every case is different > and the use of helmets etc etc is personal choice. > > Finally, the logic your referring to again is about making an > informed desicion by both doctors and parents. Visting doctors that > know and understand plagio is critical. But the story is talking > about deformation plagio and saying that it needs urgent attention. I > don't agree with that. Cranio on the other hand does need urgent > attention. > The urgency in terms of deformational plagio is only to ensure that > you as a parent can decide whether to band or not befoer its too late. > > I have a report here that has some very good information and pictures > of kids with plagio and the long term affects of plagio. I am > thinking of making a web site and putting it on line to help others. > > Simon > Adelaide, Australia > > To fully > > understand the context you would need to see the program not just > read the > > web page!!!! > > And one other thing - (please don't take this as an attack) BUT > plagio does > > require urgent attention - it was confirmed to me today by 6 > different Dr's > > that my daughters condition will NEVER!!!! round out on its own or > look > > normal - > > The other thing is if parents do not have their childrens flat > heads looked > > at early - how on God's earth will they ever be diagnosed early > enough if it > > is Cranio. Just food for thought really and logic! > > > > Regards > > nna > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 Simon: Why don't you try to scan them first, and if it's a no-go, we'll try snail mail. Kendra in Canadawww.plagiocephaly.org/support/Plagiocephaly/joinhttp://geocities.com/kendraandhanna/ ----- Original Message ----- From: classic_celica@... Plagiocephaly Sent: Sunday, September 09, 2001 2:19 PM Subject: Re: helmet story Kendra,I only have a hard copy of this report. I haven't tried to scan the pics and not sure how good they will come out.Maybe I should send you a hard copy?Simon> Simon:> I would be very interested in seeing this report. If you would like to send it to my private email, please do!> p-nutsmum@s... > Thanx!> Kendra in Canada> www.plagiocephaly.org/support/> Plagiocephaly/join> http://geocities.com/kendraandhanna/> ----- Original Message ----- > From: classic_celica@y... > Plagiocephaly@y... > Sent: Saturday, September 08, 2001 11:11 PM> Subject: Re: helmet story> > > nna,> Fair enough but don't you think people searching the net for info > will find this information misleading?? Thats is my point.> > I think you have missed my point altogether. I agree that awareness > needs to be raised to ensure that kids with cranio are detected early > and receive quick treatment. Thats the whole point behind the push to > have Peds and GP's made more aware of plagio.> > Also I agree that deformation plagio will NEVER round out perfectly. > That is a fact. > However, I have a report from Dr. about several kids that have > moderate plagio. The report clearly illustrates the effect of > deformational plagio over a long period of time. The pictures of > these kids heads that have been taken from a baby up until they are > around 10 years old. These pictures do in fact show that although the > head isn't ever going to be "perfect" it will get to a point where it > is barely noticeable and therefore one needs to question the use of > helmets for mild to moderate plagio.> > I don't want to argue with you over the use of helmets. The main > thing is that as parents we have enough information so we feel we > have made the right desicion for our kids. In Jades case I am happy > to let time look after her plagio. No doubt every case is different > and the use of helmets etc etc is personal choice.> > Finally, the logic your referring to again is about making an > informed desicion by both doctors and parents. Visting doctors that > know and understand plagio is critical. But the story is talking > about deformation plagio and saying that it needs urgent attention. I > don't agree with that. Cranio on the other hand does need urgent > attention.> The urgency in terms of deformational plagio is only to ensure that > you as a parent can decide whether to band or not befoer its too late.> > I have a report here that has some very good information and pictures > of kids with plagio and the long term affects of plagio. I am > thinking of making a web site and putting it on line to help others.> > Simon> Adelaide, Australia> > To fully > > understand the context you would need to see the program not just > read the > > web page!!!!> > And one other thing - (please don't take this as an attack) BUT > plagio does > > require urgent attention - it was confirmed to me today by 6 > different Dr's > > that my daughters condition will NEVER!!!! round out on its own or > look > > normal - > > The other thing is if parents do not have their childrens flat > heads looked > > at early - how on God's earth will they ever be diagnosed early > enough if it > > is Cranio. Just food for thought really and logic!> > > > Regards> > nna> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 Kendra, OK. If they scan well, I'll set up a plagio site. The information in the report is quite interesting and is the only report I have that shows pictures of untreated kids with mild to moderate plagio over a period of around 8 years or so. The data and results are based on an ongoing study of 202 kids with plagio who have been diagnosed in Adelaide. Out of the 202 kids, a small number of them were treated using helmet therapy and a couple had surgery because they had cranio. It's interesting to note that there are some very skilled doctors and surgeons in Australia when it comes to plagio. I'm sure many parents get the run around like I did because finding these specialists is almost like uncovering some sort of secret... Simon > > Simon: > > I would be very interested in seeing this report. If you would > like to send it to my private email, please do! > > p-nutsmum@s... > > Thanx! > > Kendra in Canada > > www.plagiocephaly.org/support/ > > Plagiocephaly/join > > http://geocities.com/kendraandhanna/ > > ----- Original Message ----- > > From: classic_celica@y... > > Plagiocephaly@y... > > Sent: Saturday, September 08, 2001 11:11 PM > > Subject: Re: helmet story > > > > > > nna, > > Fair enough but don't you think people searching the net for info > > will find this information misleading?? Thats is my point. > > > > I think you have missed my point altogether. I agree that > awareness > > needs to be raised to ensure that kids with cranio are detected > early > > and receive quick treatment. Thats the whole point behind the > push to > > have Peds and GP's made more aware of plagio. > > > > Also I agree that deformation plagio will NEVER round out > perfectly. > > That is a fact. > > However, I have a report from Dr. about several kids that > have > > moderate plagio. The report clearly illustrates the effect of > > deformational plagio over a long period of time. The pictures of > > these kids heads that have been taken from a baby up until they > are > > around 10 years old. These pictures do in fact show that although > the > > head isn't ever going to be " perfect " it will get to a point > where it > > is barely noticeable and therefore one needs to question the use > of > > helmets for mild to moderate plagio. > > > > I don't want to argue with you over the use of helmets. The main > > thing is that as parents we have enough information so we feel we > > have made the right desicion for our kids. In Jades case I am > happy > > to let time look after her plagio. No doubt every case is > different > > and the use of helmets etc etc is personal choice. > > > > Finally, the logic your referring to again is about making an > > informed desicion by both doctors and parents. Visting doctors > that > > know and understand plagio is critical. But the story is talking > > about deformation plagio and saying that it needs urgent > attention. I > > don't agree with that. Cranio on the other hand does need urgent > > attention. > > The urgency in terms of deformational plagio is only to ensure > that > > you as a parent can decide whether to band or not befoer its too > late. > > > > I have a report here that has some very good information and > pictures > > of kids with plagio and the long term affects of plagio. I am > > thinking of making a web site and putting it on line to help > others. > > > > Simon > > Adelaide, Australia > > > > To fully > > > understand the context you would need to see the program not > just > > read the > > > web page!!!! > > > And one other thing - (please don't take this as an attack) > BUT > > plagio does > > > require urgent attention - it was confirmed to me today by 6 > > different Dr's > > > that my daughters condition will NEVER!!!! round out on its > own or > > look > > > normal - > > > The other thing is if parents do not have their childrens flat > > heads looked > > > at early - how on God's earth will they ever be diagnosed early > > enough if it > > > is Cranio. Just food for thought really and logic! > > > > > > Regards > > > nna > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 Simon, Uncovering a secret? That is truely sad to think of all the kids that are missing out because so many parents get the run around. Unfortuantly their are so many peditricians not getting educated as far as plagio and cranio are concerned. I uncovered a huge secret over here in the states as far as surgeons go and I thank God he was brought into my daughter's life. Not only does this man have cranio in his own family so he treats each patient like his own child but he also takes part in Project smile..where surgeons go to unpriveleged countries and treat children with all kinds of craniofacial defects for free. Right now he's in Africa educating surgeons on newest techniques and helping out kids in that war ridden country. I pray he stays safe because he still has a lifetime with Leigha but he truely is an awesome man. If these surgeons are like uncovering a secret in Australia like you say maybe you should get together with some of the Ausie moms and dads on this board and push to get the word out. We have baby fairs over here in the states that CAPPS attends every couple of months...maybe instead of worrying about helmets vs nonhelmet wearers it would be more benificial just to push for awareness so these surgeons in your country are known. As you know with both cranio and plagio information is the key! The sooner either condition is caught the better the outcome. Thanks for sharing all your info..I have found it fairly interresting. - Kansas City, MO Mommy of Leigha bicoronal CS - DOC band for post op treatment 5/25/01 > > > Simon: > > > I would be very interested in seeing this report. If you would > > like to send it to my private email, please do! > > > p-nutsmum@s... > > > Thanx! > > > Kendra in Canada > > > www.plagiocephaly.org/support/ > > > Plagiocephaly/join > > > http://geocities.com/kendraandhanna/ > > > ----- Original Message ----- > > > From: classic_celica@y... > > > Plagiocephaly@y... > > > Sent: Saturday, September 08, 2001 11:11 PM > > > Subject: Re: helmet story > > > > > > > > > nna, > > > Fair enough but don't you think people searching the net for > info > > > will find this information misleading?? Thats is my point. > > > > > > I think you have missed my point altogether. I agree that > > awareness > > > needs to be raised to ensure that kids with cranio are > detected > > early > > > and receive quick treatment. Thats the whole point behind the > > push to > > > have Peds and GP's made more aware of plagio. > > > > > > Also I agree that deformation plagio will NEVER round out > > perfectly. > > > That is a fact. > > > However, I have a report from Dr. about several kids > that > > have > > > moderate plagio. The report clearly illustrates the effect of > > > deformational plagio over a long period of time. The pictures > of > > > these kids heads that have been taken from a baby up until > they > > are > > > around 10 years old. These pictures do in fact show that > although > > the > > > head isn't ever going to be " perfect " it will get to a point > > where it > > > is barely noticeable and therefore one needs to question the > use > > of > > > helmets for mild to moderate plagio. > > > > > > I don't want to argue with you over the use of helmets. The > main > > > thing is that as parents we have enough information so we > feel we > > > have made the right desicion for our kids. In Jades case I am > > happy > > > to let time look after her plagio. No doubt every case is > > different > > > and the use of helmets etc etc is personal choice. > > > > > > Finally, the logic your referring to again is about making an > > > informed desicion by both doctors and parents. Visting > doctors > > that > > > know and understand plagio is critical. But the story is > talking > > > about deformation plagio and saying that it needs urgent > > attention. I > > > don't agree with that. Cranio on the other hand does need > urgent > > > attention. > > > The urgency in terms of deformational plagio is only to > ensure > > that > > > you as a parent can decide whether to band or not befoer its > too > > late. > > > > > > I have a report here that has some very good information and > > pictures > > > of kids with plagio and the long term affects of plagio. I am > > > thinking of making a web site and putting it on line to help > > others. > > > > > > Simon > > > Adelaide, Australia > > > > > > To fully > > > > understand the context you would need to see the program > not > > just > > > read the > > > > web page!!!! > > > > And one other thing - (please don't take this as an > attack) > > BUT > > > plagio does > > > > require urgent attention - it was confirmed to me today by > 6 > > > different Dr's > > > > that my daughters condition will NEVER!!!! round out on > its > > own or > > > look > > > > normal - > > > > The other thing is if parents do not have their childrens > flat > > > heads looked > > > > at early - how on God's earth will they ever be diagnosed > early > > > enough if it > > > > is Cranio. Just food for thought really and logic! > > > > > > > > Regards > > > > nna > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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