Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 i live in the uk and my daughter has just been diagnosed with plagiocephaly at the age of 14 months. is there anyone else out there from the uk, as we had real problems trying to get the doctors and health visitors to acknowledge she had a problem even though her head is really misshapen and one of her eyes is bigger than the other. if there is anyone else out there in britain could you let me know what sort of treatment (if any) we should expect(bearing in mind that she is now 14 months). she has an appointment at addenbrookes hospital next thursday and i would like to take as much information on the subject as i can find. thanks michelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 , Please refer to message # 15773 at the plagio group, or click below. Plagiocephaly/message/15773 This will lead you to a German doctor who has a plagio clinic out of London. We have at least 2 members here who use him. They say he's wonderful. Good luck, and let us know how it goes! Kendra in CanadaFor more plagio info, go towww.plagiocephaly.org/support... ----- Original Message ----- From: michelleiain@... Plagiocephaly Sent: Sunday, June 10, 2001 11:10 AM Subject: plagiocephaly in the uk i live in the uk and my daughter has just been diagnosed with plagiocephaly at the age of 14 months. is there anyone else out there from the uk, as we had real problems trying to get the doctors and health visitors to acknowledge she had a problem even though her head is really misshapen and one of her eyes is bigger than the other. if there is anyone else out there in britain could you let me know what sort of treatment (if any) we should expect(bearing in mind that she is now 14 months). she has an appointment at addenbrookes hospital next thursday and i would like to take as much information on the subject as i can find. thanksmichelleFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Hello , My name is Aleksandra, and I have a son, Boris, who also has plagiocephaly.We live in UK, and after 15 months of trying to get doctors here in London to do something about it, I know how you feel. I feel very disappointed by health workers here, who were nothing but incompetent,arogant,unprofessional and disgracefull.I am not british, I'm serbian, but I live here. However, we found this great german doctor, and Boris has his band over 6 weeks now.We started at 16 months.Although, we've already seen some improvement, patience is very important when older child is treated. Dr.Blecher will be glad to help you.Here is his email: Joerg.C.Blecher@... His name is Chris.He is a great doctor and a great pearson.You can tell him that I gave you his email. Your child can be treated at 14 months, And you can see great results. If there is anything you'd like to ask me, please do, my email is aleksandra@..., and my phone number is 020 8805 2499. Hope to hear from you soon. Aleksandra Litovski Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 , We have several members in the UK and hopefully they will respond to your post. Just wanted to say hi and welcome to the group. Good luck - I have no idea why it is so hard to convince these doctors that a flat head and misaligned face and ears IS a reason for concern!!! Good luck and I hope you find the answers that you are looking for! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Thanks for the info. I shall follow it up straight away and let you know how we get on. I really am very grateful. Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Thanks for the info - two e-mails in as many minutes ! I shall be following up the advice straight away. Thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Rob- Welcome to the group. We have had a few parents in the UK who have sought treatment from Dr. Blecher and were pleased. I don't know specifics about his band and what ages it works on, but you might want to check out his website: http://www.cranio-online.de/index_engl.html# Good luck and let us know what happens! Dane's mom DOC Grad > Can anybody let me have details of specialists in the UK? > > Our son is now 16 months and has only just been referred to a > National Health Service specialist despite the condition being > evident at only 3 months at which time our Doctor / health visitor > told us the situation would right itself and there was nothing to > worry about. We did not even receive advice about re-positioning > techniques. > > 13 months on we are now very worried parents as we do not want our > son going through life with a potentially odd shaped head although > mentally and otherwise physically we could not be happier with him. > > His facial structure seems normal, however he has ear misalignment > and his head is considerably flattened to one side at the back. > > We have no idea what the specialist may say to us or even when we may > hope to have an appointment with him. Our Dr today shocked us > somewhat when he told us that he had never heard of headbands (or > repositioning techniques being proved to help the condition for that > matter) and had no idea of what help or advice the specialist may > provide. Without treatment he anticipates only a 30% improvement in > the condition as grows up and gave us what seems to be the > usual speech about it not being noticeable and would be covered by > hair etc. > > It is apparently standard practice in the UK for Plagiocephaly to > receive no treatment as long as the child is healthy and showing no > signs of craniosystosis and to leave the child to develop as well as > possible. > > Having seen on the net what is available to those of you in the US > (information and treatment wise) it leaves both I and s Mom both > worried and disturbed and unsure about what we should do. At the > present moment I would love to live in the US to have access to the > specialists and treatments that seem to be available - disputes with > insurance companies would be the least of my worries. > > I really would appreciate any feedback anybody can provide. > > Thanks > > Rob (a very worried Dad) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi Rob, Back in June a Mom from the UK posted on the Cranial Tech web site. She was in the same position that you are in. Her child was banded! So there is hope!!!! There is only ONE doctor in the UK that will band a child. I really hope your close enough to him. I will enclose his info for you as well copy/past some past posts from this group and another one. Christoph Blecher, MD, DMD Maxillofacial and Plastic Surgeon Klinikstrasse 29 University Hospital of Giessen Giessen, Hessen 35385 Germany 49 641 99 46271 Joerg.c.blecher@... Here are some past posts: Hi everyone, Just an update as it seems there is some confusion about Dr Blecher in London. I have been talking with him and he see's people for free. You just have to email him and he responds within approximately 1 hour. So the only cost you have to absorb is getting there. I'll post more details if any wants them after I've seen him. Or alternatively, email me at : nick.whitfield_AT_purple.net (Remove the " _AT_ " bit and put @ in instead. It stops people stealing your email address and sending you unsolicited emails) He holds his clinics on a Monday at Kings in London. I've got his secretarys details if you wish to make an appointment. I also sent him a phot of tegan's head which he seemed to think wasn't too bad but advised a consultation anyway. Dr Blecher also said that the only cost may be the cost of a helmet/band if it was necessary but it seems that he takes the view of using them only if necessary. I don't want Tegan to wear a helmet/band if she doesn't have to - I just want to be sure I can help her as best I can. If I can help anyone else through my experiences then I'm happy to do so as without this group I would be still stuck with my local doctor telling me that theres nothing wrong and suggesting I've got new parent syndrome - worrying about everything. Thanks Nick and baby Tegan Another one Dr Blecher only visits the UK for 1 day every 3 to 4 weeks. Did you know that Kings College is now going to fund helmets NHS style. Chris has been teaching Docs in Bristol too(NHS) There is funding for these helmets..............I work for the NHS what a mine field!! and there is extra money available ifyour child has needs that require help. I did tell Blecher I would put a paper together for parents finding it difficult to fund the helmet privately please don't despair there is money available Ann and Boo (Rotten Essex area where peads have no compassion or idea) From what I understand, he responds to e-mail right away! Welcome to the group! If you need anymore help, just ask! PS sorry that post was so long! > Can anybody let me have details of specialists in the UK? > > Our son is now 16 months and has only just been referred to a > National Health Service specialist despite the condition being > evident at only 3 months at which time our Doctor / health visitor > told us the situation would right itself and there was nothing to > worry about. We did not even receive advice about re-positioning > techniques. > > 13 months on we are now very worried parents as we do not want our > son going through life with a potentially odd shaped head although > mentally and otherwise physically we could not be happier with him. > > His facial structure seems normal, however he has ear misalignment > and his head is considerably flattened to one side at the back. > > We have no idea what the specialist may say to us or even when we may > hope to have an appointment with him. Our Dr today shocked us > somewhat when he told us that he had never heard of headbands (or > repositioning techniques being proved to help the condition for that > matter) and had no idea of what help or advice the specialist may > provide. Without treatment he anticipates only a 30% improvement in > the condition as grows up and gave us what seems to be the > usual speech about it not being noticeable and would be covered by > hair etc. > > It is apparently standard practice in the UK for Plagiocephaly to > receive no treatment as long as the child is healthy and showing no > signs of craniosystosis and to leave the child to develop as well as > possible. > > Having seen on the net what is available to those of you in the US > (information and treatment wise) it leaves both I and s Mom both > worried and disturbed and unsure about what we should do. At the > present moment I would love to live in the US to have access to the > specialists and treatments that seem to be available - disputes with > insurance companies would be the least of my worries. > > I really would appreciate any feedback anybody can provide. > > Thanks > > Rob (a very worried Dad) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Here are a cut and paste of 2 posts and alink to his web site. Good luck to yoU! beck dr blecher Hi, From what I understand Dr.Blecher visits the UK like once a month. From what I've read, he's the only doctor in the UK that bands babies. I suggest sending an e-mail to him. Hopefully someone else will chime in with more information. Good luck and please keep us posted. Christoph Blecher, MD, DMD Maxillofacial and Plastic Surgeon Klinikstrasse 29 University Hospital of Giessen Giessen, Hessen 35385 Germany 49 641 99 46271 Joerg.c.blecher@... Hi everyone,  Just an update as it seems there is some confusion about Dr Blecher in London.  I have been talking with him and he see's people for free. You just have to email him and he responds within approximately 1 hour. So the only cost you have to absorb is getting there. I'll post more details if any wants them after I've seen him. Or alternatively, email me at : nick.whitfield_AT_purple.net  (Remove the "_AT_" bit and put @ in instead. It stops people stealing your email address and sending you unsolicited emails)  He holds his clinics on a Monday at Kings in London. I've got his secretarys details if you wish to make an appointment. I also sent him a phot of tegan's head which he seemed to think wasn't too bad but advised a consultation anyway.  Dr Blecher also said that the only cost may be the cost of a helmet/band if it was necessary but it seems that he takes the view of using them only if necessary. I don't want Tegan to wear a helmet/band if she doesn't have to - I just want to be sure I can help her as best I can. If I can help anyone else through my experiences then I'm happy to do so as without this group I would be still stuck with my local doctor telling me that theres nothing wrong and suggesting I've got new parent syndrome - worrying about everything.  Thanks  Nick and baby Tegan  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi Rob: I'm soooo sorry to hear of your concerns. What a shame to hear that the UK STILL dismisses plagio as no big deal & does not inform parents of it at all. They could at least advise you of some repositioning techniques to help 's head shape when he was younger. I am glad to see provided you some great information. We've had many many UK members in our group many of whom have seen Dr. Blecher. Definitely contact him & see what he suggests. Good luck with all of this, I wish you the best of luck. Please keep us posted on 's progress. Welcome to the group. Debbie Abby's mom DOCGrad MI USA > Can anybody let me have details of specialists in the UK? > > Our son is now 16 months and has only just been referred to a > National Health Service specialist despite the condition being > evident at only 3 months at which time our Doctor / health visitor > told us the situation would right itself and there was nothing to > worry about. We did not even receive advice about re-positioning > techniques. > > 13 months on we are now very worried parents as we do not want our > son going through life with a potentially odd shaped head although > mentally and otherwise physically we could not be happier with him. > > His facial structure seems normal, however he has ear misalignment > and his head is considerably flattened to one side at the back. > > We have no idea what the specialist may say to us or even when we may > hope to have an appointment with him. Our Dr today shocked us > somewhat when he told us that he had never heard of headbands (or > repositioning techniques being proved to help the condition for that > matter) and had no idea of what help or advice the specialist may > provide. Without treatment he anticipates only a 30% improvement in > the condition as grows up and gave us what seems to be the > usual speech about it not being noticeable and would be covered by > hair etc. > > It is apparently standard practice in the UK for Plagiocephaly to > receive no treatment as long as the child is healthy and showing no > signs of craniosystosis and to leave the child to develop as well as > possible. > > Having seen on the net what is available to those of you in the US > (information and treatment wise) it leaves both I and s Mom both > worried and disturbed and unsure about what we should do. At the > present moment I would love to live in the US to have access to the > specialists and treatments that seem to be available - disputes with > insurance companies would be the least of my worries. > > I really would appreciate any feedback anybody can provide. > > Thanks > > Rob (a very worried Dad) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Rob: I found this old post from another frustrated UK parent from several mos ago, same information as you've already rec'd but it might help! Debbie Abby's mom DOCGrad MI USA > Hi, We recently found this group very useful as we were desperately searching round to figure out what was best for our daughter Molly and things were quite confused here in the UK. I therefore wanted to post something about the UK in the hope that others may find this posting in the future. (FYI, Regarding Molly it turns out that her case is quite mild and does not require helmet therapy.) 1. In the UK things are very confused but it is clear that you child should go and see one of the four regional craniofacial centres in Liverpool, Birmingham, London and Oxford. These guys are very negative on helmets but are the real experts. 2. For the helmet point of view, there is only one guy to talk to and that is Dr. Blecher. You can find a link to him on the website and his email is: Joerg.C.Blecher@... 3. There is a guy in Bristol who is doing helmets. I haven't met him and didn't get a helmet off him but my strong feeling is that Dr. Blecher is more experienced and offering a much higher quality soltuion. I hope this is of use and thanks to all for your help up to now. Cheers, Van Buren Quote Link to comment Share on other sites More sharing options...
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