Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hi there. Thanks for posting. I happen to be up at what my friend calls "butt slam A.M." so I saw your post right away. It's beautifully written. I'm so sorry you are going through such a terrible time. Please believe you made the right decision. Little kids have big meltdowns all the time. You feel horrible about the casting and scaring her, but she's fine, believe me. They get just as mad when you pin them down for a bath in about a year, and they don't need a lifetime of therapy to get over it. Just talk to her every once in a while and explain why you did it, and she'll process it just fine. I was reading a study showing that memory is linked to language development, so if she isn't talking much yet, she probably won't even remember. But if she seems to understand what you say, then just mention it every once in a while: "Remember the other day, when we put that stuff on your head and you got really mad and scared and you cried and cried? Well, next week you'll see why we did it. You get a special new hat to wear all the time, and we're going to put stickers on it, and you'll get to pick them out!" My son could understand a lot of stuff like that by a year, and girls tend to develop language skills sooner, so it's worth talking about just in case she's listening. Am I boring you yet? What kind of helmet are you getting through Dr. Blecher? I ask because at ten months, your daughter is at a good age for correction still, especially if it's an "active" band. There are several other parents from the UK with kids going into helmets now, so hopefully someone will pipe up and say what kind of band it is. The reason I ask is my son is in an active type band, and he was 17 1/2 months when he got it! And he's getting correction! I cannot believe the results we are seeing. My child was going to look deformed if I hadn't gotten a band, and now he's going to look totally normal. I am really really happy about my decision. You are doing the right thing and I promise you won't regret it. The day your daughter comes home from her first birthday party and declares she was the prettiest girl there, you will sit her down and explain that how you behave is more important, and then you will go hide in your room and do a really weird victory dance and knock a lamp off the bedside table and be sooooo glad you got her a helmet. You will also blow a big raspberry at the jerks who gave you such bad advice. If you need some help, most of the parents on this board are experts at blowing raspberries at their babies' doctors. Let us know how you are doing, and what kind of helmet she's getting. On Mon, 07 Jun 2004 12:41:28 -0000 "spboneuk" <simonpbaldock@...> writes: I'm new to this board and would like to share my experiences. From two weeks old we had noticed that Holly always had a tendency to look to one particular side. Our Health visitors and GP all ignored our opinions and said that it was nothing to worry about. We noticed her head shape was not completely 'normal', but all the advice we received was that it would correct itself when she was sitting up. She was diagnosed with mild plagiocephaly and slightly hypertonic. At 9 months we saw a consultant paedatrician who said she was developing normally and should make good progress. It was only when my wife searched on the internet that we discovered there was a potential link between the hypertonia and the head shape that made us determined to get some answers. What finally brought it home was the experience of a colleague at work whose son saw Dr Blecher in London.We saw him this Sunday at his clinic in London, who said that she was classed as being moderately plagiocephalic, although from the front, her facial features were perfect, her right ear was about an inch forward of her left. Had she been severe, he would have recommended her the helmet, if mild, to do nothing. Because of her age, the helmet would not provide guaranteed improvement - had we seen him six months ago, then the chances of improvement would have been so much greater. As a result, the decision was entirely ours to make. He also explained some neck exercises that could have helped the neck muscles and help stop the looking to one side, and maybe that could have helped with her head shape. All too late now.The decision – to do nothing, and hope for the best that it would get better on its own, or to put her through six minutes of hell with the casting, and then the longer term effects of wearing the helmet. All for just vanity? It was the hardest decision we have ever had to make. Had we been six months earlier, we would have had the luxury of time to make our decision. To make it within an hour seemed so impossible. All sorts of emotions crossed us. Was it cruel? Would it really make any difference? Were we bad parents? Why hadn't anyone listened?We eventually came to the decision that we had to go for the helmet. At 10 months old, we knew the chances of making a major difference were not as good, but at least we would have done everything possible for her. It would have been so easy to have walked out and gone home to let nature takes its course, but the constant niggling thought of `what if?' in six months time would have been impossible.The casting process was hell, my wife couldn't watch, I felt so inadequate and like the worst father ever, watching as the casting material was put on her – Holly screaming and fighting against us. Those few minutes seemed to last forever, and always at the back of my mind `had we made the right decision'. When the cast finally came off, she sobbed, the rest of her bed-time milk soothing her. She even giggled at the nurse once she had calmed down. Driving home she was a happy sausage once again.In two weeks time we go back for fitting (on Father's Day of all days). I still wonder whether we have made the right decision. I do not know what the future holds for us, but at least we have some hope.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hi there and welcome to the group. The members that are in the UK speak highly of Dr Bleecher, Holly is in great hands. Making that decision is definately one of the hardest to face. In the long run, a rounder head will be your reward for doing this. I know it's a tough one but keep in mind, it's often much harder on the parents. Holly will forget about it and a few months in a helmet is actually a very short amount of time. Many, if not most, parents feel the way you did... did you do the right thing. I think you did and kudos to you for doing something. I have a friend who won't do anything and her little guy is now almost 11 months, he is quite severe and has showed no improvement with letting nature do it's course. Let us know when she gets the helmet and post pictures if you can. Kim mom to Kaela (9) and Jaxson 11 mo tort/CranioCap grad 04/09/04 --- In Plagiocephaly , " spboneuk " <simonpbaldock@f...> wrote: > I'm new to this board and would like to share my experiences. From > two weeks old we had noticed that Holly always had a tendency to look > to one particular side. Our Health visitors and GP all ignored our > opinions and said that it was nothing to worry about. We noticed her > head shape was not completely 'normal', but all the advice we > received was that it would correct itself when she was sitting up. > She was diagnosed with mild plagiocephaly and slightly hypertonic. At > 9 months we saw a consultant paedatrician who said she was developing > normally and should make good progress. > > It was only when my wife searched on the internet that we discovered > there was a potential link between the hypertonia and the head shape > that made us determined to get some answers. What finally brought it > home was the experience of a colleague at work whose son saw Dr > Blecher in London. > > We saw him this Sunday at his clinic in London, who said that she was > classed as being moderately plagiocephalic, although from the front, > her facial features were perfect, her right ear was about an inch > forward of her left. Had she been severe, he would have recommended > her the helmet, if mild, to do nothing. Because of her age, the > helmet would not provide guaranteed improvement - had we seen him six > months ago, then the chances of improvement would have been so much > greater. As a result, the decision was entirely ours to make. > > He also explained some neck exercises that could have helped the neck > muscles and help stop the looking to one side, and maybe that could > have helped with her head shape. All too late now. > > The decision – to do nothing, and hope for the best that it would get > better on its own, or to put her through six minutes of hell with the > casting, and then the longer term effects of wearing the helmet. All > for just vanity? It was the hardest decision we have ever had to > make. Had we been six months earlier, we would have had the luxury of > time to make our decision. To make it within an hour seemed so > impossible. All sorts of emotions crossed us. Was it cruel? Would it > really make any difference? Were we bad parents? Why hadn't anyone > listened? > > We eventually came to the decision that we had to go for the helmet. > At 10 months old, we knew the chances of making a major difference > were not as good, but at least we would have done everything possible > for her. It would have been so easy to have walked out and gone home > to let nature takes its course, but the constant niggling thought > of `what if?' in six months time would have been impossible. > > The casting process was hell, my wife couldn't watch, I felt so > inadequate and like the worst father ever, watching as the casting > material was put on her – Holly screaming and fighting against us. > Those few minutes seemed to last forever, and always at the back of > my mind `had we made the right decision'. When the cast finally came > off, she sobbed, the rest of her bed-time milk soothing her. She even > giggled at the nurse once she had calmed down. Driving home she was a > happy sausage once again. > > In two weeks time we go back for fitting (on Father's Day of all > days). I still wonder whether we have made the right decision. I do > not know what the future holds for us, but at least we have some hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hi, Welcome to ther group. You're in good hands with Dr. Blecher, I've only heard good things about him! My fingers are crossed that you see some correction. Please keep us posted. -- In Plagiocephaly , " spboneuk " <simonpbaldock@f...> wrote: > I'm new to this board and would like to share my experiences. From > two weeks old we had noticed that Holly always had a tendency to look > to one particular side. Our Health visitors and GP all ignored our > opinions and said that it was nothing to worry about. We noticed her > head shape was not completely 'normal', but all the advice we > received was that it would correct itself when she was sitting up. > She was diagnosed with mild plagiocephaly and slightly hypertonic. At > 9 months we saw a consultant paedatrician who said she was developing > normally and should make good progress. > > It was only when my wife searched on the internet that we discovered > there was a potential link between the hypertonia and the head shape > that made us determined to get some answers. What finally brought it > home was the experience of a colleague at work whose son saw Dr > Blecher in London. > > We saw him this Sunday at his clinic in London, who said that she was > classed as being moderately plagiocephalic, although from the front, > her facial features were perfect, her right ear was about an inch > forward of her left. Had she been severe, he would have recommended > her the helmet, if mild, to do nothing. Because of her age, the > helmet would not provide guaranteed improvement - had we seen him six > months ago, then the chances of improvement would have been so much > greater. As a result, the decision was entirely ours to make. > > He also explained some neck exercises that could have helped the neck > muscles and help stop the looking to one side, and maybe that could > have helped with her head shape. All too late now. > > The decision – to do nothing, and hope for the best that it would get > better on its own, or to put her through six minutes of hell with the > casting, and then the longer term effects of wearing the helmet. All > for just vanity? It was the hardest decision we have ever had to > make. Had we been six months earlier, we would have had the luxury of > time to make our decision. To make it within an hour seemed so > impossible. All sorts of emotions crossed us. Was it cruel? Would it > really make any difference? Were we bad parents? Why hadn't anyone > listened? > > We eventually came to the decision that we had to go for the helmet. > At 10 months old, we knew the chances of making a major difference > were not as good, but at least we would have done everything possible > for her. It would have been so easy to have walked out and gone home > to let nature takes its course, but the constant niggling thought > of `what if?' in six months time would have been impossible. > > The casting process was hell, my wife couldn't watch, I felt so > inadequate and like the worst father ever, watching as the casting > material was put on her – Holly screaming and fighting against us. > Those few minutes seemed to last forever, and always at the back of > my mind `had we made the right decision'. When the cast finally came > off, she sobbed, the rest of her bed-time milk soothing her. She even > giggled at the nurse once she had calmed down. Driving home she was a > happy sausage once again. > > In two weeks time we go back for fitting (on Father's Day of all > days). I still wonder whether we have made the right decision. I do > not know what the future holds for us, but at least we have some hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Welcome to the group. Please don't second guess your decision. You're definitely doing the right thing in being proactive for your daughter and I'm sure she'll thank you some day for it! She is absolutely not too old to see good correction and I think you'll be quickly amazed at the results. We have many Dr. Blecher members who I'm sure will chime in. The casting isn't fun for many babies, but I'm sure she's forgotten all about it by now! Moderate plagio is still quite a bit of assymetry and nobody can tell you for sure if it would have improved at all on its own. I wouldn't say you're doing it just for vanity either as plagio is still new enough that they don't know the long term effects of untreated plagio. Some docs say it can lead to migraines, TMJ, ear infections, etc., plus there is the psychological effects of children being made fun of for having a misshapen head. I don't think you will ever regret your decision, but you may have if you did nothing and it didn't improve on it's own. Do you do strecthes for your daughter's tort? Even though it's too late to prevent head involvement from it, you can certainly still help her muscle. Please let us know how the fitting goes. Be assured the worst is over (the casting) and it should all be smooth sailing from now on! , mom to Hannah, DOCband #3 3/30 Cape Cod, Ma > I'm new to this board and would like to share my experiences. From > two weeks old we had noticed that Holly always had a tendency to look > to one particular side. Our Health visitors and GP all ignored our > opinions and said that it was nothing to worry about. We noticed her > head shape was not completely 'normal', but all the advice we > received was that it would correct itself when she was sitting up. > She was diagnosed with mild plagiocephaly and slightly hypertonic. At > 9 months we saw a consultant paedatrician who said she was developing > normally and should make good progress. > > It was only when my wife searched on the internet that we discovered > there was a potential link between the hypertonia and the head shape > that made us determined to get some answers. What finally brought it > home was the experience of a colleague at work whose son saw Dr > Blecher in London. > > We saw him this Sunday at his clinic in London, who said that she was > classed as being moderately plagiocephalic, although from the front, > her facial features were perfect, her right ear was about an inch > forward of her left. Had she been severe, he would have recommended > her the helmet, if mild, to do nothing. Because of her age, the > helmet would not provide guaranteed improvement - had we seen him six > months ago, then the chances of improvement would have been so much > greater. As a result, the decision was entirely ours to make. > > He also explained some neck exercises that could have helped the neck > muscles and help stop the looking to one side, and maybe that could > have helped with her head shape. All too late now. > > The decision – to do nothing, and hope for the best that it would get > better on its own, or to put her through six minutes of hell with the > casting, and then the longer term effects of wearing the helmet. All > for just vanity? It was the hardest decision we have ever had to > make. Had we been six months earlier, we would have had the luxury of > time to make our decision. To make it within an hour seemed so > impossible. All sorts of emotions crossed us. Was it cruel? Would it > really make any difference? Were we bad parents? Why hadn't anyone > listened? > > We eventually came to the decision that we had to go for the helmet. > At 10 months old, we knew the chances of making a major difference > were not as good, but at least we would have done everything possible > for her. It would have been so easy to have walked out and gone home > to let nature takes its course, but the constant niggling thought > of `what if?' in six months time would have been impossible. > > The casting process was hell, my wife couldn't watch, I felt so > inadequate and like the worst father ever, watching as the casting > material was put on her – Holly screaming and fighting against us. > Those few minutes seemed to last forever, and always at the back of > my mind `had we made the right decision'. When the cast finally came > off, she sobbed, the rest of her bed-time milk soothing her. She even > giggled at the nurse once she had calmed down. Driving home she was a > happy sausage once again. > > In two weeks time we go back for fitting (on Father's Day of all > days). I still wonder whether we have made the right decision. I do > not know what the future holds for us, but at least we have some hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hello and welcome to this board. My daughter Willow now 1year of age was also treated by Dr. Blecher. She was casted and banded at 6months of age. Her measurements were 12mm at the time and at graduation 10wks later it was down to 1mm. The growth rate at your daughter's age is still great and you will see improvement. She might not ever be perfect, but you will see that it will be much better. You have def. made the right decision for your daughter and as a former pt (daughter) of Dr. Blechers I can tell you that you are in great hands. Also my daughter Willow had torticollis, which sounds like your daughter might have as well. If you can have her evaluated by a physical therapist. Home streches are great, but sometimes not enough. Willow was in pt for 6months. Sandy Willow's Mom Torticollis resolved Cranio Germany Grad 02/04 > I'm new to this board and would like to share my experiences. From > two weeks old we had noticed that Holly always had a tendency to look > to one particular side. Our Health visitors and GP all ignored our > opinions and said that it was nothing to worry about. We noticed her > head shape was not completely 'normal', but all the advice we > received was that it would correct itself when she was sitting up. > She was diagnosed with mild plagiocephaly and slightly hypertonic. At > 9 months we saw a consultant paedatrician who said she was developing > normally and should make good progress. > > It was only when my wife searched on the internet that we discovered > there was a potential link between the hypertonia and the head shape > that made us determined to get some answers. What finally brought it > home was the experience of a colleague at work whose son saw Dr > Blecher in London. > > We saw him this Sunday at his clinic in London, who said that she was > classed as being moderately plagiocephalic, although from the front, > her facial features were perfect, her right ear was about an inch > forward of her left. Had she been severe, he would have recommended > her the helmet, if mild, to do nothing. Because of her age, the > helmet would not provide guaranteed improvement - had we seen him six > months ago, then the chances of improvement would have been so much > greater. As a result, the decision was entirely ours to make. > > He also explained some neck exercises that could have helped the neck > muscles and help stop the looking to one side, and maybe that could > have helped with her head shape. All too late now. > > The decision – to do nothing, and hope for the best that it would get > better on its own, or to put her through six minutes of hell with the > casting, and then the longer term effects of wearing the helmet. All > for just vanity? It was the hardest decision we have ever had to > make. Had we been six months earlier, we would have had the luxury of > time to make our decision. To make it within an hour seemed so > impossible. All sorts of emotions crossed us. Was it cruel? Would it > really make any difference? Were we bad parents? Why hadn't anyone > listened? > > We eventually came to the decision that we had to go for the helmet. > At 10 months old, we knew the chances of making a major difference > were not as good, but at least we would have done everything possible > for her. It would have been so easy to have walked out and gone home > to let nature takes its course, but the constant niggling thought > of `what if?' in six months time would have been impossible. > > The casting process was hell, my wife couldn't watch, I felt so > inadequate and like the worst father ever, watching as the casting > material was put on her – Holly screaming and fighting against us. > Those few minutes seemed to last forever, and always at the back of > my mind `had we made the right decision'. When the cast finally came > off, she sobbed, the rest of her bed-time milk soothing her. She even > giggled at the nurse once she had calmed down. Driving home she was a > happy sausage once again. > > In two weeks time we go back for fitting (on Father's Day of all > days). I still wonder whether we have made the right decision. I do > not know what the future holds for us, but at least we have some hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Sorry I forgot to ask. Did you happen to get the measurements that your daughter has? I was just curious. Sandy Willow's Mom Torticollis resolved Cranio Germany Grad 02/04 > I'm new to this board and would like to share my experiences. From > two weeks old we had noticed that Holly always had a tendency to look > to one particular side. Our Health visitors and GP all ignored our > opinions and said that it was nothing to worry about. We noticed her > head shape was not completely 'normal', but all the advice we > received was that it would correct itself when she was sitting up. > She was diagnosed with mild plagiocephaly and slightly hypertonic. At > 9 months we saw a consultant paedatrician who said she was developing > normally and should make good progress. > > It was only when my wife searched on the internet that we discovered > there was a potential link between the hypertonia and the head shape > that made us determined to get some answers. What finally brought it > home was the experience of a colleague at work whose son saw Dr > Blecher in London. > > We saw him this Sunday at his clinic in London, who said that she was > classed as being moderately plagiocephalic, although from the front, > her facial features were perfect, her right ear was about an inch > forward of her left. Had she been severe, he would have recommended > her the helmet, if mild, to do nothing. Because of her age, the > helmet would not provide guaranteed improvement - had we seen him six > months ago, then the chances of improvement would have been so much > greater. As a result, the decision was entirely ours to make. > > He also explained some neck exercises that could have helped the neck > muscles and help stop the looking to one side, and maybe that could > have helped with her head shape. All too late now. > > The decision – to do nothing, and hope for the best that it would get > better on its own, or to put her through six minutes of hell with the > casting, and then the longer term effects of wearing the helmet. All > for just vanity? It was the hardest decision we have ever had to > make. Had we been six months earlier, we would have had the luxury of > time to make our decision. To make it within an hour seemed so > impossible. All sorts of emotions crossed us. Was it cruel? Would it > really make any difference? Were we bad parents? Why hadn't anyone > listened? > > We eventually came to the decision that we had to go for the helmet. > At 10 months old, we knew the chances of making a major difference > were not as good, but at least we would have done everything possible > for her. It would have been so easy to have walked out and gone home > to let nature takes its course, but the constant niggling thought > of `what if?' in six months time would have been impossible. > > The casting process was hell, my wife couldn't watch, I felt so > inadequate and like the worst father ever, watching as the casting > material was put on her – Holly screaming and fighting against us. > Those few minutes seemed to last forever, and always at the back of > my mind `had we made the right decision'. When the cast finally came > off, she sobbed, the rest of her bed-time milk soothing her. She even > giggled at the nurse once she had calmed down. Driving home she was a > happy sausage once again. > > In two weeks time we go back for fitting (on Father's Day of all > days). I still wonder whether we have made the right decision. I do > not know what the future holds for us, but at least we have some hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 A big thank you to everyone that has replied to us. It has given us a huge encouragement that what we are doing is the right decision. We went back to our GP today and he has (finally) recommended Holly to see a physiotherapist, which will hopefully help with her sitting up and hypertonia. There are so many `if only' things going round our heads at the moment. We feel badly let down by our doctors and health visitors. Dr Blecher was very good. It was nice to actually talk to someone who had an understanding of the condition. Holly measured 1.7cm for the asymmetry, which I think is on the high side of moderate. We're not sure what to expect at the fitting stage, but hopefully the worst is behind us. Simon and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Willow my daughter started tummy sleeping at about 8 months. They are strong enough at this age so I was told. I'm glad you are going to see a PT. They will be able to tell you more about the muscle tone and what you can do to help Holly. Let us know how the fitting goes. ) Sandy Willow's Mom Torticollis resolved Cranio Germany Grad 02/04 > > > I'm new to this board and would like to share my experiences. > From > > > two weeks old we had noticed that Holly always had a tendency to > > look > > > to one particular side. Our Health visitors and GP all ignored > our > > > opinions and said that it was nothing to worry about. We noticed > > her > > > head shape was not completely 'normal', but all the advice we > > > received was that it would correct itself when she was sitting > > up. > > > She was diagnosed with mild plagiocephaly and slightly > hypertonic. > > At > > > 9 months we saw a consultant paedatrician who said she was > > developing > > > normally and should make good progress. > > > > > > It was only when my wife searched on the internet that we > > discovered > > > there was a potential link between the hypertonia and the head > > shape > > > that made us determined to get some answers. What finally > brought > > it > > > home was the experience of a colleague at work whose son saw Dr > > > Blecher in London. > > > > > > We saw him this Sunday at his clinic in London, who said that > she > > was > > > classed as being moderately plagiocephalic, although from the > > front, > > > her facial features were perfect, her right ear was about an > inch > > > forward of her left. Had she been severe, he would have > > recommended > > > her the helmet, if mild, to do nothing. Because of her age, the > > > helmet would not provide guaranteed improvement - had we seen > him > > six > > > months ago, then the chances of improvement would have been so > > much > > > greater. As a result, the decision was entirely ours to make. > > > > > > He also explained some neck exercises that could have helped the > > neck > > > muscles and help stop the looking to one side, and maybe that > > could > > > have helped with her head shape. All too late now. > > > > > > The decision & #8211; to do nothing, and hope for the best that > it would > > get > > > better on its own, or to put her through six minutes of hell > with > > the > > > casting, and then the longer term effects of wearing the helmet. > > All > > > for just vanity? It was the hardest decision we have ever had to > > > make. Had we been six months earlier, we would have had the > luxury > > of > > > time to make our decision. To make it within an hour seemed so > > > impossible. All sorts of emotions crossed us. Was it cruel? > Would > > it > > > really make any difference? Were we bad parents? Why hadn't > anyone > > > listened? > > > > > > We eventually came to the decision that we had to go for the > > helmet. > > > At 10 months old, we knew the chances of making a major > difference > > > were not as good, but at least we would have done everything > > possible > > > for her. It would have been so easy to have walked out and gone > > home > > > to let nature takes its course, but the constant niggling > thought > > > of `what if?' in six months time would have been impossible. > > > > > > The casting process was hell, my wife couldn't watch, I felt so > > > inadequate and like the worst father ever, watching as the > casting > > > material was put on her & #8211; Holly screaming and fighting > against us. > > > Those few minutes seemed to last forever, and always at the back > > of > > > my mind `had we made the right decision'. When the cast finally > > came > > > off, she sobbed, the rest of her bed-time milk soothing her. She > > even > > > giggled at the nurse once she had calmed down. Driving home she > > was a > > > happy sausage once again. > > > > > > In two weeks time we go back for fitting (on Father's Day of all > > > days). I still wonder whether we have made the right decision. I > > do > > > not know what the future holds for us, but at least we have some > > hope. > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
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