Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 my daughter has the same thing....actually two little knots on one side of her neck/shoulder....i have an appt with CT on Wed. i'll ask them then and let you know. let me know what your PT says on Tues. im quite curious. thanks. rr From: ashesval <ashesval@...>Subject: Knot on neckPlagiocephaly Date: Saturday, January 31, 2009, 6:30 PM My 7.5 month old son (R-plagio and slight tort) has a little knot on the right side of his neck (a bit higher up). Anyone else notice this?I read somewhere on the internet something about how when the baby is comfortable in utero, and then is born, the baby is so used to lying in a specific way and then all of a sudden the neck is cranked at birth and something tears and then scar tissue is formed and this may be the knot... Anyone know what I am talking about?I forgot to mention this to the neurologist at the last visit but I will mention it to the PT at his helmet fitting on tuesday. Just wondering if anyone else that has/had a child with tort noticed a knot or if I am totally reaching here!!ThanksS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Some knots can be worked out through PT. Others can't. Our daughter had to have surgery to fix her bad one after months of PT failed to release it. It's not necessarily scar tissue, could just be they way they grew inutero, which was the case of my girl's. She was squished into my hip for the last 8+ weeks of the pregnancy which cause her to grow that way. She was born with a BAD case of tort and a moderate case of plagio that got worse. You're doing the right thing having them keep an eye on it. Elaine (twin A) tort & plagio, 8mos, 2nd helmet since 1/5/09 On Sat, Jan 31, 2009 at 4:36 PM, Rygmyr <rrygmyr@...> wrote: my daughter has the same thing....actually two little knots on one side of her neck/shoulder....i have an appt with CT on Wed. i'll ask them then and let you know. let me know what your PT says on Tues. im quite curious. thanks. rr From: ashesval <ashesval@...>Subject: Knot on neckPlagiocephaly Date: Saturday, January 31, 2009, 6:30 PM My 7.5 month old son (R-plagio and slight tort) has a little knot on the right side of his neck (a bit higher up). Anyone else notice this?I read somewhere on the internet something about how when the baby is comfortable in utero, and then is born, the baby is so used to lying in a specific way and then all of a sudden the neck is cranked at birth and something tears and then scar tissue is formed and this may be the knot... Anyone know what I am talking about? I forgot to mention this to the neurologist at the last visit but I will mention it to the PT at his helmet fitting on tuesday. Just wondering if anyone else that has/had a child with tort noticed a knot or if I am totally reaching here!!ThanksS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 My daughter Skye is a twin as well (Baby She was breach although we did a CSection. She was pretty squished as well. Is surgery usually necessary if the knot does not go away? RR Skye (Twin Tort & Brachy/Plagio - 15 1/2 months (start band 2/4/09) From: ashesval <ashesval (DOT) ca>Subject: Knot on neckPlagiocephalyDate: Saturday, January 31, 2009, 6:30 PM My 7.5 month old son (R-plagio and slight tort) has a little knot on the right side of his neck (a bit higher up). Anyone else notice this?I read somewhere on the internet something about how when the baby is comfortable in utero, and then is born, the baby is so used to lying in a specific way and then all of a sudden the neck is cranked at birth and something tears and then scar tissue is formed and this may be the knot... Anyone know what I am talking about?I forgot to mention this to the neurologist at the last visit but I will mention it to the PT at his helmet fitting on tuesday. Just wondering if anyone else that has/had a child with tort noticed a knot or if I am totally reaching here!!ThanksS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 That I'm unsure of. Elaine was a 'worst case' and was put into PT three times a week at 2 weeks old. At six months she went in for surgery because the knot was not releasing. She had made GREAT improvement in that time frame, but it just wasn't enough. What they did for her neck was to shoot that problem muscle up with botox. It seems to be working quite well. At her last evaluation her surgeon was more concerned with her head shape, which is a good thing. We go back for a recheck when she's roughly 10 months. They can botox the other tight muscle group, but so far is seems PT is helping it come along just fine as the weaker spots in her neck get stronger. If the botox didn't work, the next option is more invasive. They would actually " surgerically release " the muscle, which means cutting Most of the time botox works well because it's not scar tissue or an actual short muscle. Yes the muscle is short, but it's because it's contracted. It was described to me most similar to a charlie horse. One that needs extra help in relaxing. If you have concerns about stubborn knots, I'd definitely talk to both your physical therapist and a craniofacial plastic surgeon. A second opinion can never hurt. Elaine (twin A) tort & plagio, 8mos, 2nd helmet since 1/5/09 On Mon, Feb 2, 2009 at 1:06 PM, Rygmyr <rrygmyr@...> wrote: My daughter Skye is a twin as well (Baby She was breach although we did a CSection. She was pretty squished as well. Is surgery usually necessary if the knot does not go away? RR Skye (Twin Tort & Brachy/Plagio - 15 1/2 months (start band 2/4/09) From: ashesval <ashesval (DOT) ca>Subject: Knot on neckPlagiocephaly Date: Saturday, January 31, 2009, 6:30 PM My 7.5 month old son (R-plagio and slight tort) has a little knot on the right side of his neck (a bit higher up). Anyone else notice this?I read somewhere on the internet something about how when the baby is comfortable in utero, and then is born, the baby is so used to lying in a specific way and then all of a sudden the neck is cranked at birth and something tears and then scar tissue is formed and this may be the knot... Anyone know what I am talking about? I forgot to mention this to the neurologist at the last visit but I will mention it to the PT at his helmet fitting on tuesday. Just wondering if anyone else that has/had a child with tort noticed a knot or if I am totally reaching here!!ThanksS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 I spoke to the Occupational Therapist who fitted my son's helmet today and she said the knot was in fact a lymph node and not a knot. So I was wrong. It has nothing to do with his plagiocephaly or tort. I am sure there are other knots that are... but in our case, I was wrong! > > From: ashesval <ashesval@...> > Subject: Knot on neck > Plagiocephaly > Date: Saturday, January 31, 2009, 6:30 PM > > > > > > > My 7.5 month old son (R-plagio and slight tort) has a little knot on the right side of his neck > (a bit higher up). > > Anyone else notice this? > > I read somewhere on the internet something about how when the baby is comfortable in > utero, and then is born, the baby is so used to lying in a specific way and then all of a sudden > the neck is cranked at birth and something tears and then scar tissue is formed and this may > be the knot... Anyone know what I am talking about? > > I forgot to mention this to the neurologist at the last visit but I will mention it to the PT at his > helmet fitting on tuesday. > > Just wondering if anyone else that has/had a child with tort noticed a knot or if I am totally > reaching here!! > > Thanks > > S > Quote Link to comment Share on other sites More sharing options...
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