Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 If there is anyone familiar with infant torticollis that would like to help create a non-profit organization for this condition, please contact me personally infant_torticollis@... Thanks, Pattie Everett Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 , From what you've described it does sound like tort may be a factor. Is the side that feels more tight, the same side he tilts towards? In other words, my son had/has left tort, so he tilted his head to the left (top of head tilts left, appears that chin is tilted to the right, and just the opposite for right tort). My son developed a flat spot on the right back, because he had left tort- which meant that the muscle was so tight that it took more effort for him to turn left, so therefore he favored the right side, and the back became flat as he " rubbed " it away. Some Docs are not very good at dx tort, although my son did have the lump, some tort kids do not have a lump, but they still may have tort. Ask your ped to refer you to a neurologist for a dx to rule out tort- if it is tort- you will want to start doing pt as soon as you get a dx of muscular tort- I have run into a mom that had plagio dx first, and then tort dx at 10 months, so it was like the old saying of putting the cart before the horse so to speak. Check out www.torticolliskids to check out before and after pics of kids with tort- this may help you by seeing something familiar. Good luck and please keep me posted, if I can help you in anyway- please let me know. ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 In a message dated 8/13/2002 4:03:12 PM Eastern Daylight Time, jyoungma2@... writes: We actually have an appointment with a neurosurgeon on Monday. Can he diagnose tort? , Our neuro wrote a referral to have an MRI done- this will allow them to see if its a muscular problem, or a spinal fusion problem. Most tort is muscular, and is effectively treated with physical therapy. You should definetly reposition off that flat spot as much as possible, and encourage to look towards that tight muscle side. Also, tummy time helps strengthen those neck muscles as well. My son also had the "tort ear" where it sticks out a little further than the other. I believe this happened from his inutero position, where he was stuck a certain way for a long period of time. I would pursue this with your neuro, and really educate yourself firsthand so that you can become quite the expert yourself to ask questions that you know need answers. I will attach a link that will show you what types of holds/stretches you may be doing if tort is dx. Good luck and please keep us posted! ' Mom Torticollis Info Stretches/ Holds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 , My daughter (9 mos) has tort & plagio. Her plagio is on the opposite side of the tort because she tilts right, but points her chin to the left. Look at your little one and see if this is the case - this is typical in tort babies. Her first ped dis not diagnose tort because she has no visible lump in the tight muscle, but we knew something was just wrong when she was continuosly crooked over like that for 2 months! Her new ped diagnosed tort right away and referred us to a PT program for tort babies. You may want to ask your ped about it at your next visit, or if it is a bit away you may want to schedule an appt sooner so that if you do need to go to a PT you can get started right away. A word of wisdom though, it won't just " go away " or " take care of itself " , trust me. If you get that answer from your ped, push him! Hope to hear how it goes! & Vivian --- jyoungma2 <jyoungma2@...> wrote: > Hi There! > > Our Pediatrician checked my son's neck and did not > say he had tort, > but the more I read...the more I think he may. > He leans his head to one side when he's sitting up > in his bouncy chair > or carseat (actually more when he is sleeping > there). His ear was > curled on that side when he was born, but his > flatness is on the > opposite side. Does this sound like Tort? Or would > the flattening be > on the same side as the tilt? He can turn his head > either way, but one > side seems a little stiffer. > > Thanks, > > ('s Mom) > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 It sounds very much like tort. I belong to the tort list and the daughter of a friend of mine on there had the ear curling that you describe. I would definitely get it checked out. Tort and plagio seem to go hand in hand from my experience. has left-sided tort with plagio on the right. This is because when they tilt most pressure is on the opposite side of the head. I hope this has helped. tilts both ways and can turn her head but her ROM is very limited on her tort side and the PT felt diffuse fibrosis on this side also. Taryn and torticollis Hi There!Our Pediatrician checked my son's neck and did not say he had tort, but the more I read...the more I think he may. He leans his head to one side when he's sitting up in his bouncy chair or carseat (actually more when he is sleeping there). His ear was curled on that side when he was born, but his flatness is on the opposite side. Does this sound like Tort? Or would the flattening be on the same side as the tilt? He can turn his head either way, but one side seems a little stiffer.Thanks, ('s Mom)For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 I would advise you guys to join the tort list also because they can answer all of the questions you have. There are great people on that list also who are dealing with tort and plagio both. The group is torticollis kids. From what I have been told a lot of neuros won't dx tort. It depends on the person. Taryn Re: torticollis has a buldge on the left side of his forehead (the right side of his head is flat). His cheek in the right is puffy and his left eye is squinty. He's almost 4 months. We actually have an appointment with a neurosurgeon on Monday. Can he diagnose tort? Our Ped. gave us the whole ..."his necks a little stiff and his head will round out routine". I wasn't happy with that answer and called the neuro myself. Luckily my ins doesn't require a referral.-> > Hi There!> > > > Our Pediatrician checked my son's neck and did not say he had > tort, > > but the more I read...the more I think he may. > > He leans his head to one side when he's sitting up in his bouncy > chair > > or carseat (actually more when he is sleeping there). His ear was > > curled on that side when he was born, but his flatness is on the > > opposite side. Does this sound like Tort? Or would the flattening > be > > on the same side as the tilt? He can turn his head either way, but > one > > side seems a little stiffer.> > > > Thanks, > > > > ('s Mom)For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 I am just curious as to how old Dane is? Congrats that he is resolved....I just feel like this will never go away. Taryn Re: torticollis -Bingo! Sounds very typical of tort. Unfortunetly a lot of dr aren't too up on tort or plagio. A lot of neuroseurgeons brush it off as well, but maybe not the one you are going too.A friend emailed me pictures of her 4mo son. It was quite apparent in the pictures that he had tort. I emailed them to (tort mom). She agreed. Lori took her son to a OT friend. Low and behold he had it. The ped just wrote the PT script w/o seeing him again. I would recommend getting started on PT ASAP. The younger the better. The exercises aren't fun and the older the child, the more he will resist. Since you are going on Monday, I would hope the dr can write you a script then. That is great that you were able to get an appt with the specialist so quickly! A lot of times it will take 1-2 months. Sounds like you are on the ball! Dane's mom DOC Grad tort resolved> > > Hi There!> > > > > > Our Pediatrician checked my son's neck and did not say he had > > tort, > > > but the more I read...the more I think he may. > > > He leans his head to one side when he's sitting up in his bouncy > > chair > > > or carseat (actually more when he is sleeping there). His ear was > > > curled on that side when he was born, but his flatness is on the > > > opposite side. Does this sound like Tort? Or would the flattening > > be > > > on the same side as the tilt? He can turn his head either way, but > > one > > > side seems a little stiffer.> > > > > > Thanks, > > > > > > ('s Mom)For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 I have heard good things about her on the tort list. I should get her book. When did you start PT? I am glad to hear it resolved and he is just fine now. It makes me feel better about and her prognosis. I keep blaming myself and I know we all play the blame game but it's really hard not to. I can't wait to start PT and kick this thing. I know it's going to be a long road but the sooner we get started the better. Best of luck to you and Dane for the future!!! Taryn Re: torticollis Taryn - He is 11 months old. He has been resolved since May. We were lucky to have had Karmel Ross (KKR) as his PT. He wasn't born with tort, as you may have read in my post about the Cleveland Clinic about an hour or two ago. Tort is pretty stubborn thing to get rid of. Even when he had full ROM and the tilt was gone, he still had to work on reaching high with his left arm. I was afraid he was never going to have 100% function, but let me assure you that he is a little hellion now. Dane's mom DOC Grad > > > > Hi There!> > > > > > > > Our Pediatrician checked my son's neck and did not say he had > > > tort, > > > > but the more I read...the more I think he may. > > > > He leans his head to one side when he's sitting up in his > bouncy > > > chair > > > > or carseat (actually more when he is sleeping there). His ear > was > > > > curled on that side when he was born, but his flatness is on > the > > > > opposite side. Does this sound like Tort? Or would the > flattening > > > be > > > > on the same side as the tilt? He can turn his head either way, > but > > > one > > > > side seems a little stiffer.> > > > > > > > Thanks, > > > > > > > > ('s Mom)> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 We are starting next week. is 4.5 months right now. I am going to see what PT says before I take her for a consult with someone about her plagio. I don't know if it's extreme enough to warrant banding or a helmet. All that matters is that you got him into therapy and now he is resolved!!!! Taryn Re: torticollis Taryn-We started PT at 2.5 months. He didn't start with . He was discharged the first time the PT saw him. Our ped sent us back a month later and she again said he was fine and discharged him again. A couple weeks after that, I asked for a script for a DOC Band. does the bands too and she put him back in PT. He was in PT with for 4 months I believe.I felt guilty for not forcing the issue sooner! Dane's mom DOC Grad> > > > > Hi There!> > > > > > > > > > Our Pediatrician checked my son's neck and did not say he > had > > > > tort, > > > > > but the more I read...the more I think he may. > > > > > He leans his head to one side when he's sitting up in his > > bouncy > > > > chair > > > > > or carseat (actually more when he is sleeping there). His > ear > > was > > > > > curled on that side when he was born, but his flatness is > on > > the > > > > > opposite side. Does this sound like Tort? Or would the > > flattening > > > > be > > > > > on the same side as the tilt? He can turn his head either > way, > > but > > > > one > > > > > side seems a little stiffer.> > > > > > > > > > Thanks, > > > > > > > > > > ('s Mom)> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 In a message dated 8/13/2002 5:24:48 PM Eastern Daylight Time, devynskye1@... writes: I would advise you guys to join the tort list also because they can answer all of the questions you have. There are great people on that list also who are dealing with tort and plagio both. Taryn, I would second that suggestion, the tort board was very instrumental in helping me work with tort, not only with great tips and suggestions, but with photos of before and after that helped me calm down and understand that it was very treatable. They are a great bunch! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 They are and I am so thankful I came across them and now you guys!!! They have helped me to stop blaming myself (to some extent) for 's condition and get educated and do something about it. Taryn Re: Re: torticollis In a message dated 8/13/2002 5:24:48 PM Eastern Daylight Time, devynskye1@... writes: I would advise you guys to join the tort list also because they can answer all of the questions you have. There are great people on that list also who are dealing with tort and plagio both. Taryn,I would second that suggestion, the tort board was very instrumental in helping me work with tort, not only with great tips and suggestions, but with photos of before and after that helped me calm down and understand that it was very treatable. They are a great bunch!' MomFor more plagio info Quote Link to comment Share on other sites More sharing options...
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