Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi Heidi & welcome to our group! Wow, you are doing everything perfectly already! What a great mom you are. Before I start talking about your daughter, can I ask how your niece's head looks today? Has her head rounded out any on it's own? It's always interesting to hear updates on non banded plagio babies to see IF in fact their heads do round on their own over time like so many Drs say they will. The 1st thing I think you should insist to your ped. is for him to refer you & to phys. therapy for her torticollis. It sounds like she could definitely benefit from it, as she sounds to be a more moderate - severe case of it as you have described. Phys Therapy could help her ROM a ton which would help her plagio as well. Check out www.plagiocephaly.org/support then repositioning tips for some helpful tips. I understand your dilemma with her in the car seat for a long drive. Have you tried any repositioning products? Check out our " bookmarks " section then I think the first folder in there has " repositioning links' w/several repositioning product links that might help. That is great you've already been in to Cranial Tech for a free eval.. Even better to hear they feel her case is mild and you could still benefit from repositioning over the next month. My daughter was referred to a ped. neuro for her eval as well. He checked Abby for cranio & sent her for Xrays to rule it out. That might be what your ped. is suggesting for . Welcome again to our group.....please keep us updated on your repositioning attempts. best of luck. Debbie Abby's mom DOCGrad MI > My daughter, is 3 ½ months old. She was dx with positional > plagiocephaly and Torticollis two weeks ago. When she was 8 weeks > old I pointed out to 's pediatrician that her head flat in the > back. I was told her head was fine and that was normal. I wasn't > too sure about that, but thought I may have been over sensitive > because my niece, had an abnormal shaped head. For they > did a ton of tests, CT and X-rays ever few months because they had > problems dx if a suture was fused in the back. It turned out that it > wasn't, but they never offer the band as an option. When was 2 > ½ yrs. old surgery was offer but had a high risk so that option was > not taken. > Back to , I tried repositioning with not luck. I started doing > research on the band and plagiocephaly. I discovered how to look for > an asymmetric face, a to my surprise had one. I had never > noticed it before, but her ears did not align, her forehead and cheek > bulged forward, even her eye was lower on one side and bigger. And I > may be crazy by I thing her nose is crooked. I also read about > Torticollis. I had never heard of it before, but sure enough > showed signs of having it. She only held her head in one way and it > was impossible to get her to look over her left shoulder. > So, I called the pediatrician to set up an appt. to have her head and > neck looked at and get a referral. The pediatrician dx her with > plagiocephaly and Torticollis. He showed me how to stretch her neck > and told me to not have her on her back unless she was sleeping. I > asked about the band, but he said wait until she is 6 months old > before we talk about any treatment because her head it being shaped > by outside forces and around 6 months is when the brain starts to > make contact with the skull. This sounded odd, so I asked for a > referral. At first he said no, which surprised me because this > office normally is very proactive. She has an urologist; she had a > kidney infection and was dx with reflux. The pediatrician quickly > referred me to an urologist, and even CALL ME to make sure I followed > up with the specialist. After realizing I have a PPO, he said " I > can't stop you from seeing a specialist " . So, he gave me the names > of two neurosurgeons. I had originally asked for a pediatric > craniofacial plastic surgeon. My pediatrician said a neurosurgeon > was better because he would check for other things. (What other > things? If she is fine and it would most likely round out on its > own.) > I went into the Cranial Tech clinic for a free consult. was > measured; her head was 7 mm and her face was 2-3 mm asymmetrical. I > was told it was mild but her head was enough to treat. The clinic > recommended a go with the repositioning for 4-6 weeks to see if there > is any improvement. > Do I wait? Do I call to make an appt with the specialist now to set > up an appt in a month? I heard it may take sometime to get into see > one. > What do I do with her when I can't hold her? She loves tummy time > and is happy for about 20-30 minutes. However, I am not comfortable > leaving her on her belly if I can't watch her. So what do I do when > I am bathing my other kids or making dinner? I also am taking a trip > to my sister's next week. A ten hours car trip. What do I do in the > car? I have her sitting to the right of her brother, but she doesn't > look at him. She looks at the nothing that is on the other side. > Until the Torticollis is corrected I don't see how she will be able > to hold her head in any other position. > Help! > Heidi (mother of 6, 4 and 3 ½ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi Heidi and welcome to the group! It sounds like you have already done a ton of research and have gotten the ball rolling, good for you!! If I were you, I would go ahead and set up the appointment with the specialist for a month from now. Our neuro had also advised to go home, reposition, and then come back in a month. Your daughter is still at an excellent age for repositioning to work wonders and possibly avoid the band altogether! You can find some repositioning techniques and products that will aide you in our Bookmarks section in the folder titled 'Repositioning'. Good luck to you, Heidi, and please let us know how the repositioning works out for you! Niki Kaylie & Danny (STAR grads) Phila., PA > My daughter, is 3 ½ months old. She was dx with positional > plagiocephaly and Torticollis two weeks ago. When she was 8 weeks > old I pointed out to 's pediatrician that her head flat in the > back. I was told her head was fine and that was normal. I wasn't > too sure about that, but thought I may have been over sensitive > because my niece, had an abnormal shaped head. For they > did a ton of tests, CT and X-rays ever few months because they had > problems dx if a suture was fused in the back. It turned out that it > wasn't, but they never offer the band as an option. When was 2 > ½ yrs. old surgery was offer but had a high risk so that option was > not taken. > Back to , I tried repositioning with not luck. I started doing > research on the band and plagiocephaly. I discovered how to look for > an asymmetric face, a to my surprise had one. I had never > noticed it before, but her ears did not align, her forehead and cheek > bulged forward, even her eye was lower on one side and bigger. And I > may be crazy by I thing her nose is crooked. I also read about > Torticollis. I had never heard of it before, but sure enough > showed signs of having it. She only held her head in one way and it > was impossible to get her to look over her left shoulder. > So, I called the pediatrician to set up an appt. to have her head and > neck looked at and get a referral. The pediatrician dx her with > plagiocephaly and Torticollis. He showed me how to stretch her neck > and told me to not have her on her back unless she was sleeping. I > asked about the band, but he said wait until she is 6 months old > before we talk about any treatment because her head it being shaped > by outside forces and around 6 months is when the brain starts to > make contact with the skull. This sounded odd, so I asked for a > referral. At first he said no, which surprised me because this > office normally is very proactive. She has an urologist; she had a > kidney infection and was dx with reflux. The pediatrician quickly > referred me to an urologist, and even CALL ME to make sure I followed > up with the specialist. After realizing I have a PPO, he said " I > can't stop you from seeing a specialist " . So, he gave me the names > of two neurosurgeons. I had originally asked for a pediatric > craniofacial plastic surgeon. My pediatrician said a neurosurgeon > was better because he would check for other things. (What other > things? If she is fine and it would most likely round out on its > own.) > I went into the Cranial Tech clinic for a free consult. was > measured; her head was 7 mm and her face was 2-3 mm asymmetrical. I > was told it was mild but her head was enough to treat. The clinic > recommended a go with the repositioning for 4-6 weeks to see if there > is any improvement. > Do I wait? Do I call to make an appt with the specialist now to set > up an appt in a month? I heard it may take sometime to get into see > one. > What do I do with her when I can't hold her? She loves tummy time > and is happy for about 20-30 minutes. However, I am not comfortable > leaving her on her belly if I can't watch her. So what do I do when > I am bathing my other kids or making dinner? I also am taking a trip > to my sister's next week. A ten hours car trip. What do I do in the > car? I have her sitting to the right of her brother, but she doesn't > look at him. She looks at the nothing that is on the other side. > Until the Torticollis is corrected I don't see how she will be able > to hold her head in any other position. > Help! > Heidi (mother of 6, 4 and 3 ½ months) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.