Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Hi , Welcome to the group! Sadly, your story is pretty common around her. A lot of pediatrician's aren't educated about tort and plagio. Hopefully your new doc will be educated about them. Your baby needs to be checked out by a physical therapist who is familiar with infant torticollis. You should start with your insurance co, call them and ask them which PTs are in your plan. Call them and find the one who is familiar with tort. Then ask your new doc for a referral (if you need one. There is an excellent STARband orthotist in PA! His name is Bud Lawall. Check out this link: http://www.opga.com/MAS/States/Pennsylvania.asp Scroll until you find the name Lawall, hopefully they have an office near you. Maybe you could go there and ask them what they think about your baby's head. Good luck and please keep us posted. > > Hi, my name is , and I am located in PA. My son is not yet > diagnosed with anything, other than a self diagnosis by me. I am > almost positive he has torticollis and plagiocephaly. He will only > turn his head to the right and it always tilts to the left. The left > back of his head is also flat. > > He was not thriving in utero, so I had to be induced. His head was > pretty tiny and there was a very visible ridge across the whole top. > The doctor told us it was just because his head was tiny that we > could see his growth plates and they were overlapping, but it would > go away. It eventually did go away, but now it is back, but only on > the right side. > > We took him to the family doctor at 4.5 months (last week) and he > said he " will outgrow it " and it isn't torticollis. I didn't know to > press the issue of tort or plagio, because I did the research after I > got home. I managed to convince the doctor to do some x-rays. They > called and said there are no bone abnormalities. But I thought tort > had to so with muscle, not bone. > > Anyways, I am switching to a ped that hopefully has dealt with this. > I am just so afraid he will say " he will outgrow it " . I am trying to > equip myself with as much info as possible to take with me. > > I will get some pictures of to post when he wakes up > > in PA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Hi , Welcome to the group! Sadly, your story is pretty common around her. A lot of pediatrician's aren't educated about tort and plagio. Hopefully your new doc will be educated about them. Your baby needs to be checked out by a physical therapist who is familiar with infant torticollis. You should start with your insurance co, call them and ask them which PTs are in your plan. Call them and find the one who is familiar with tort. Then ask your new doc for a referral (if you need one. There is an excellent STARband orthotist in PA! His name is Bud Lawall. Check out this link: http://www.opga.com/MAS/States/Pennsylvania.asp Scroll until you find the name Lawall, hopefully they have an office near you. Maybe you could go there and ask them what they think about your baby's head. Good luck and please keep us posted. > > Hi, my name is , and I am located in PA. My son is not yet > diagnosed with anything, other than a self diagnosis by me. I am > almost positive he has torticollis and plagiocephaly. He will only > turn his head to the right and it always tilts to the left. The left > back of his head is also flat. > > He was not thriving in utero, so I had to be induced. His head was > pretty tiny and there was a very visible ridge across the whole top. > The doctor told us it was just because his head was tiny that we > could see his growth plates and they were overlapping, but it would > go away. It eventually did go away, but now it is back, but only on > the right side. > > We took him to the family doctor at 4.5 months (last week) and he > said he " will outgrow it " and it isn't torticollis. I didn't know to > press the issue of tort or plagio, because I did the research after I > got home. I managed to convince the doctor to do some x-rays. They > called and said there are no bone abnormalities. But I thought tort > had to so with muscle, not bone. > > Anyways, I am switching to a ped that hopefully has dealt with this. > I am just so afraid he will say " he will outgrow it " . I am trying to > equip myself with as much info as possible to take with me. > > I will get some pictures of to post when he wakes up > > in PA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2010 Report Share Posted April 5, 2010 You are probably just noticing things that you know are related to AS now, as before you just saw it as part of her personality. You can't "hide" the AS symptoms and it will take more than just correcting her to stop the behaviors. Even before your daughter is officially diagnosed, you can try to see a counselor who can help you with techniques to try to work with her on having a back and forth conversation, how to get her attention, etc. This would probably help you feel better to know there is a plan and you are not alone in trying to help your daughter. And once (if) she is diagnosed, you will have access to more professionals who can be part of the team. It is scary, but you can talk to us, we understand what you are going through. ~~~~~~~~~~~~~~~~~~~~~~ Suzanne suzmarkwood@... From: debbie9206473 <Debra.Logan@...>Subject: ( ) New and Worried Date: Saturday, April 3, 2010, 7:19 AM My dd is 5 and is being evaluated for AS. Until now I just thought she was "quirky," and I was fully accepting of her, but now that we believe she has AS, I am having a hard time not "correcting" her all the time. I can't stand how I have become impatient and stressed about things that never worried me before (poor eye contact, inappropriately talking about the same topic for hours, not paying attention and falling a lot). How do you all handle it? I want to be patient and loving, but I am so scared for her that I try too much to "fix" her problem areas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2010 Report Share Posted April 5, 2010 Pick one or two things you want to shape. Tell her you will be giving her stickers for this behavior and that. Role play for 1-2 stickers the desired behaviors 1-2 times a day. Reinforce this behavior by giving a sticker anytime you see her do it on her own. Keep up the role play and rehearsing daily otherwise she won't know what you want. Don't try to do more than 1-2 things. Fade stickers if she is improving and move on to another behavior. If you work on behaviors this way you will definately see improvements. And your child is so young. Don't get scared if there is regression in behaviors during periods of high anxiety. Address the cause of anxiety by chaning the environment at school and home and if this proves still a problem consider low dose of medication for anxiety if needed. I am sure if you use this type of method (basically a simplied Applied Behavior Analysis ABA) and get her services she needs you will see improvements and things will look more promising for her future. That being said when I am tried and stressed myself I can really scare myself to death with worry. So take care of yourself too. Pam > > My dd is 5 and is being evaluated for AS. Until now I just thought she was " quirky, " and I was fully accepting of her, but now that we believe she has AS, I am having a hard time not " correcting " her all the time. I can't stand how I have become impatient and stressed about things that never worried me before (poor eye contact, inappropriately talking about the same topic for hours, not paying attention and falling a lot). How do you all handle it? I want to be patient and loving, but I am so scared for her that I try too much to " fix " her problem areas > Quote Link to comment Share on other sites More sharing options...
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