Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 Welcome Dawn, look forward to getting to know you. You have a great attitude. Hugs June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Welcome Dawn: It looks like you have a plate full, I am sorry for the reason you found this group, but always happy to see new folk. I look forward to hearing more from and about you. My name is kathi and I have been battling sclroderma, and some other piddley little nusances for awhile, so far no definite score varies day to day..welcome to the group and I think you will find them to be a great bunch of people......Kathi in OK > Hi my names Dawn.I have Lupus, Fibromyalgia an Marfans syndrome. > I was diagnosed with Lupus at the age of 15 an I am now 30 I have > alot of flair ups my last BAD one was 4 yrs ago which ended me > with a yr in hospital with a feeding tube an on a vent. I'm off the > vent now but I still have my feeding tube an it also left me in a > Wheelchair but it doesn't STOP me from having Fun an I live my life > day by day as I never know what tomorow may hold. > > HUGS Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi , Welcome to the group! We have some members from your area. Are you doing agressive repositioning or looking into helmet therapy for your son? Please be sure to keep us posted on . , mom to Hannah, DOCgrad 7/29 Cape Cod, Ma > > Hi to you all, my name is and I live in Surrey, England, UK > with my hubby and our 2 children. Our youngest son who is 5 > months old has postional plagiocephaly. I have a pysiotherapist that > comes out to review him every month, he is very flat headed on the > right handside of head. His head movement has got better but he > still isn't using full range so I have to keep going with doing the > head reposition exercises. The pysio thinks it could have happend > whilst in utro but I really can't remember his head looking flat > when he was born, I remember it being quiet elongated. I try to keep > him on his tummy but he really does not like it but I am persistent. > Anyhow I think that is enough of me babbling on for now, if anyone > wants to chat I have messenger my add is saeltu1973@y... > > x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hello Welcome to the group. I'm the Europe mod, and usually located in Germany. In the US at the moment. We have quite a few members from the UK at the moment. You have 3 options for helmet therapy in the UK. I will add the contact addresses. STARband Mottram Clinical Specialist Registered Orthotist 10 Harley Street London W1G 9PF 01254 267 400 mottram@... STARband supplied by Mr. Mottram Adjustments made by Mr. Garth Royal National Orthopaedic Hospital 41 Bolsover Street Garth / Senior Ortho 44 7771 966 200 Local helmet (German Cranio helmet) Dr. Blecher / Mr R. Bentley King's College Hospital Denmark Hill London SE5 9RS 0207 3461753 www.crani-online.de This location has a long waiting period, so here is another appointments made by contacting Dr. Blecher with his email 40 Harley Street bell ELY, London Joerg.C.Blecher@... You can self refer to all 3 contacts above. Let us know how comes along with his tx. Sandy Willow's Mom torticollis resolved Cranio Germany Grad > > Hi to you all, my name is and I live in Surrey, England, UK > with my hubby and our 2 children. Our youngest son who is 5 > months old has postional plagiocephaly. I have a pysiotherapist that > comes out to review him every month, he is very flat headed on the > right handside of head. His head movement has got better but he > still isn't using full range so I have to keep going with doing the > head reposition exercises. The pysio thinks it could have happend > whilst in utro but I really can't remember his head looking flat > when he was born, I remember it being quiet elongated. I try to keep > him on his tummy but he really does not like it but I am persistent. > Anyhow I think that is enough of me babbling on for now, if anyone > wants to chat I have messenger my add is saeltu1973@y... > > x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi ...welcome to the group. As you've already been told, we have a lot of UK members. Good for you on the persistence it takes to make your baby like tummy time. Keep it up and soon enough he will love it. You've already been asked this but I am wondering if you are doing repositioning for 's flat spot. Keep in touch and let us know how things are going. Becky ('s mom) in Pgh,PA > > Hi to you all, my name is and I live in Surrey, England, UK > with my hubby and our 2 children. Our youngest son who is 5 > months old has postional plagiocephaly. I have a pysiotherapist that > comes out to review him every month, he is very flat headed on the > right handside of head. His head movement has got better but he > still isn't using full range so I have to keep going with doing the > head reposition exercises. The pysio thinks it could have happend > whilst in utro but I really can't remember his head looking flat > when he was born, I remember it being quiet elongated. I try to keep > him on his tummy but he really does not like it but I am persistent. > Anyhow I think that is enough of me babbling on for now, if anyone > wants to chat I have messenger my add is saeltu1973@y... > > x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi Welcome!I'm from Wimbledon and currently my little girl Lucia is in a helmet for severe plagio( but not for much longer, hooray!!!!) It sounds like you have a really good idea of some of the problems with this and it is great that you have a physio to help with neck stretches etc. I was told by my specialist that 4-6 months is a time of really rapid growth in the skull of babies- so this is a great time to do repositioning. I'm sure that Lucia got a lot worse during this time because I didn't know to do it. There are loads of helpful suggestions in the files on repositioning that have come about through trial and error- so benefit from others' experience!!! If you are unsure about how much better/worse your son's head is getting, why not take some photos every week -in the bath is best or with the head wet. A top view (with both ears), sides and a front view will tell you if things are changing. If you do decide that despite your best efforts, repo is not having the desired effect (many people set a deadline), then there are places in the Uk to get a band. It may well be that someone has told you this info (I haven't been able to read all the posts in the last few days), but basically, there is Steve Mottram with the STARband and Dr Blecher with the Cranio helmet. If you want to see Dr Blecher at Kings (and I have found him to be truly excellent), then I would get in touch with him now to book an appointment (say for a month or so's time) as he is very busy. He will also look at photos of your son for you and give you his opinion for free, but personally I would try to see him in person (also free) as I think things can look quite different in a photo and he is very honest and won't tell you to go ahead if he didn't think it necessary. Both Steve and Dr Blecher's numbers are in the database section under Band/helmet providers in England. It may be that getting a helmet for your son is far from your mind anyway- and it sounds like you are doing really well with your exercises etc- so let us know how it goes. I included the info, not to try and suggest a helmet is the way to go, more to let you know there are options. I feel really regretful that I didn't find out more when Lucia was younger about repo as I certainly would have liked to give it more of a try. Hope things go well for you, sorry if I have repeated what others have told you, I haven't been able to read all the messages as I'm away and on the world's slowest computer!!!!! Hannah (mum to Lucia, London, UK) Plagio, Cranio helmet, 4th July. > > Hi , > Welcome to the group! We have some members from your area. Are you > doing agressive repositioning or looking into helmet therapy for > your son? Please be sure to keep us posted on . > , mom to Hannah, DOCgrad 7/29 > Cape Cod, Ma > --- In Plagiocephaly , " " <saeltu@h...> wrote: > > > > Hi to you all, my name is and I live in Surrey, England, UK > > with my hubby and our 2 children. Our youngest son who is 5 > > months old has postional plagiocephaly. I have a pysiotherapist > that > > comes out to review him every month, he is very flat headed on the > > right handside of head. His head movement has got better but he > > still isn't using full range so I have to keep going with doing > the > > head reposition exercises. The pysio thinks it could have happend > > whilst in utro but I really can't remember his head looking flat > > when he was born, I remember it being quiet elongated. I try to > keep > > him on his tummy but he really does not like it but I am > persistent. > > Anyhow I think that is enough of me babbling on for now, if anyone > > wants to chat I have messenger my add is saeltu1973@y... > > > > x Quote Link to comment Share on other sites More sharing options...
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