Guest guest Posted June 29, 2010 Report Share Posted June 29, 2010 What kind of exercises does the PT have you doing? Are you doing them at home too? Like 5 times a day? Have you thought about consulting a different PT? Even with severe tort, I would think you should have seen more improvement in 9 months time. I have heard of PT lasting a couple of years, especially when milestones are hit, it can regress a little for some severe cases. But I looked at his picture (cute!) and can definitely see it's still very significant. I think you need to find an orthopaedic that has more experience with tort, because the one you saw obviously doesn't know what he's talking about. I can see outgrowing minor cases of tort, but no way do they just outgrow severe tort. I would start looking for some second and even third opinions before you deal with an MRI, just to make sure you have all of the information you need. I was fortunate that my son's tort was resolved in about 3 months time, so I'm not that experienced with severe cases, but the mass they found sounds pretty significant. Have you mentioned it on the tort kids message board? They would likely have more experiences to share. What does your pedi say? I hope you get the help you need! Please keep us posted! Jake-3.5 (DOCBand Grad 9/08) Raleigh, NC > > My 13 month old son has had severe Torticollis since birth. He has been in pt since he was 4 months old and we have only seen mild improvement, which I believe is simply due to his growth and ability to hold his head up better. His PT said that she would normally expect to see more improvent with the amount of time he has been in treatment and being that he is now walking on his own and has muscle control. How long do I continue with weekly pt appointments if there is no further improvement? I feel like there is no light at the end of the tunnel. Every doctor I talk to is against surgery, yet other mom's who have waited for the surgery have told me that they wished they did it when their child was younger. We have ruled out ocular Tort. In his recent C-spine x-ray an extra mass was found in his neck so we were sent to an orthopedic surgeon who almost dismissed us with a 6 month recall appointment " b/c kids normally outgrow tort " . He hasn't outgrown it in 13 months! The ortho. didn't even explain to me what the mass was. When I demanded answers he said we would have to come back for an MRI but it is rare that it is anything serious. So now I am waiting for our insurance to authorize the x-ray before I can make an appt. I just want the tort gone! > > I have added a picture in the older kids tort album, . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2010 Report Share Posted June 29, 2010 Just based on what I've read, I would suspect that mass is fibrous tissue. There are several parents who are active on the tort group (Torticolliskids) whose children had similar issues with scar tissue and underwent surgery with great results. Botox treatments are offered in some areas; have any of these doctors offered other treatments in addition to intensive PT? Perhaps the parents in the tort group can direct you to doctors with more experience in treating severe tort. My daughter's tort was a bit stubborn and took six long months of PT to see dramatic improvement, but she was slowly and gradually getting better throughout that time. I do think you are right in questioning if something else needs to be done in order to correct his tort. Best of luck, Sharyn Lexi DOC Band graduate 02/2010 > > My 13 month old son has had severe Torticollis since birth. He has been in pt since he was 4 months old and we have only seen mild improvement, which I believe is simply due to his growth and ability to hold his head up better. His PT said that she would normally expect to see more improvent with the amount of time he has been in treatment and being that he is now walking on his own and has muscle control. How long do I continue with weekly pt appointments if there is no further improvement? I feel like there is no light at the end of the tunnel. Every doctor I talk to is against surgery, yet other mom's who have waited for the surgery have told me that they wished they did it when their child was younger. We have ruled out ocular Tort. In his recent C-spine x-ray an extra mass was found in his neck so we were sent to an orthopedic surgeon who almost dismissed us with a 6 month recall appointment " b/c kids normally outgrow tort " . He hasn't outgrown it in 13 months! The ortho. didn't even explain to me what the mass was. When I demanded answers he said we would have to come back for an MRI but it is rare that it is anything serious. So now I am waiting for our insurance to authorize the x-ray before I can make an appt. I just want the tort gone! > > I have added a picture in the older kids tort album, . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 I just had this thought yesterday as I watched a 6mo with tort graduate from PT, while my 8mo has at least six MORE months. ( I'm especially frustrated because we've tried chiropractic care and craniosacral therapy, too, and all with very little progress. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2010 Report Share Posted July 5, 2010 I hear you! I'm having such difficulty resolving our son's tort. I keep hearing comments about it from the clinician at Cranial Tech. Thank God for her or I would think I was losing my mind! I haven't had his eyes or neck checked, but I think that's my next step. His tort is mild, but we've been doing stretches and strengthening exercises without fail even more often than suggested for 4 months, and repositioning for a couple months before that, and it barely seems to have improved, if at all. I was looking at his pictures from the last week and was so frustrated to realize that his neck angle looks the same as when we started. Ugh!!! I think you should see a different orthopedic surgeon if yours is dismissive. Why waste time with someone who doesn't want to help you? Good luck! > > My 13 month old son has had severe Torticollis since birth. He has been in pt since he was 4 months old and we have only seen mild improvement, which I believe is simply due to his growth and ability to hold his head up better. His PT said that she would normally expect to see more improvent with the amount of time he has been in treatment and being that he is now walking on his own and has muscle control. How long do I continue with weekly pt appointments if there is no further improvement? I feel like there is no light at the end of the tunnel. Every doctor I talk to is against surgery, yet other mom's who have waited for the surgery have told me that they wished they did it when their child was younger. We have ruled out ocular Tort. In his recent C-spine x-ray an extra mass was found in his neck so we were sent to an orthopedic surgeon who almost dismissed us with a 6 month recall appointment " b/c kids normally outgrow tort " . He hasn't outgrown it in 13 months! The ortho. didn't even explain to me what the mass was. When I demanded answers he said we would have to come back for an MRI but it is rare that it is anything serious. So now I am waiting for our insurance to authorize the x-ray before I can make an appt. I just want the tort gone! > > I have added a picture in the older kids tort album, . > Quote Link to comment Share on other sites More sharing options...
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