Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Hi CMZ (my maiden name initials!) Your fear of the unknown is worse than the reality- we have all been there!! As most parents here will tell you, they can't believe how well their kids (including mine) adjust to the band and go about their daily routines without interruption (there have been a few with adjustment problems, but I haven't seen too many posts about problems in the 8 months I've been online here). That is fantastic that you are getting therapy for the tort, just keep in mind that the tort is the cause of (probably) the plagio, especially since it is probably flat on the side that your daughter favors. The stretching is necessary daily, and aside from a professional pt, you should be complimenting this therapy by doing home stretching as well. I will attach a link for you of exercises, and please check out www.torticolliskids.org and the torticolliskids for more help and advice from Moms and Dads about tips and support. You will find yourself full of relief when the DOC band will concentrate on the flat spot while you can concentrate more on the tort. At this time last year, I was a 3 week old Mom, a month later I would find out about tort and two months after that, plagio. I was just as overwhelmed, but found answers from both of these support groups (tort and plagio). Educate yourself, learn from all of these great parents that have traveled the road less traveled, and you will find peace in knowledge, and the understanding that this can be treated, and it is nothing that can't be handled with hard work, and determination. Talk with your pt about the stretches I will attach and ask to help you if your confused. If you have any questions, please feel free to email me anytime! Good luck and please keep us posted! ' Mom Tort stretches link Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Christi, Hello and welcome to the group. You are in such good company here! I think pretty much everyone has had the same worries and fears that you are having right now. Will my baby adjust? Will it cause her to lose sleep? Will people stare and how will I handle it? Am I doing the right thing? and so on and so on and so on. It is normal to feel that way! Getting the tort resolved through PT will help alot with correcting the plagio. It is almost impossible to reposition when she can't really turn her head the other way! We just had another military mom join the group and as I told her it has been my understanding that Tricare does not cover the band. However, if you are up for a fight, it would be worth it to appeal, appeal and appeal again. Tricare should cover the band just as every other insurance company should (and often don't). Good luck with that. Good luck with your appointment on 2/12/02 and let us know how it goes. You have come to the right place for support, advice, answers and friendship. We're glad to have you! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Hi Christi: Welcome to our group! I don't remember the name of who made those " bands " for dolls. Aren't they so cute? If noone replies here, maybe you could post a question asking about it on the Cranial Technology Parent discussion board. www.cranialtech.com If I remember correct, the mom made the baby bands out of play doh. If you would mail her a doll, she's make a band for it. She sounded like such a nice person. I hope you find her, my daughter graduated 7 mos ago but I would still like to get her a doll, just for a keepsake! Anyhoo, would you mind telling us a bit more of your daughter's plagio story? Will she be casted for the DOCband on Feb 12? Good luck with everything, we look forward to getting to know you! Debbie abby's mom DOCgrad MI > Hi there. I am new to this page. My daughter was diagnosed with > plagio 2 months ago and just had a CT done to rule out cranio. She > goes for an appt on feb 12 for the DOC band. I saw in some pictures > a baby doll wearing a DOC band too. I understand a woman made this > for her own daughter. I am wondering if any one knows of anyone > making such a thing. I would love to get one of these dolls for my > daughter so she would have a baby doll that would look just like > her. Thanks for the help. > Christi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Hi and thanks for the quick reply. I have already posted a message at cranial techs website. Hopefully I will be able to find the woman to make the bands. My daughter is 7 months old and at her 2 month visit they pointed out her head was flat on one side. WE had noticed that her head always leaned one way all the time and she always kept her head that way. They just told us to lay her on the other side. WHich was not easy cause she did not like it at all!! And she absolutely refused. SO then at her 4 month visit this doctor ( we are military so seen by different doctors) referred us to a doctor at the hospital. So when we went to her she told me she had plagiocephaly and torticolis. ANd my daughter Mya began physical therapy for the torticolis and she also had x rays does and a ct sheduled. We went for the first ct on dec 27th but they were trying to do it without sedation but there was just no way that was working. So it had to be rescheduled. WHich on Jan 22 she was sedated and had her ct. ANd it said that the bones were not fused so that was good news. I have since talked to the doctor on the phone and she suggested the DOC band but told me that tricare hasnt paid for it in the past so it might be a fight. WEll my husband has been talking to a million people and gotten it ok'd so far we are still waiting for the final decision (well final in there eyes any way)Which we should get by tomorrow. But we have an appt with cranial tech in Charlotte on Feb 12 not for a casting but just for the initial visit. I have so many mixed feelings about this band. I want her to have it so that her poor little crooked head will be fixed and so that her features dont get any bigger on that one side. But I worry about her tolerating it and how comfortable she will be to sleep and roll over and nurse and play normally. I also worry about her being able to sleep and properly turn her head to do so. As you can see I am a big bundle of worries. SHe is my 3rd baby and this is the first I have ever heard of plagiocephaly or torticollis. I am anxious to get to the appt on the 12th and hear what they have to say. COngrats on your daughter graduating the DOC band. How is her head now? How did she tolerate it. ANy info you could give me on your personal experience would be greatly appreciated. ALso a question about painting. My mom and husband both think its a dumb idea. But I feel it is an absolutely great idea. DId you decorate your childs band and if so what was used? THanks again for the help!! --- abbygator49509 <dj2kirby@...> wrote: > Hi Christi: > Welcome to our group! I don't remember the name of > who made > those " bands " for dolls. Aren't they so cute? If > noone replies > here, maybe you could post a question asking about > it on the Cranial > Technology Parent discussion board. > www.cranialtech.com > If I remember correct, the mom made the baby bands > out of play doh. > If you would mail her a doll, she's make a band for > it. She sounded > like such a nice person. I hope you find her, my > daughter graduated > 7 mos ago but I would still like to get her a doll, > just for a > keepsake! > Anyhoo, would you mind telling us a bit more of your > daughter's > plagio story? Will she be casted for the DOCband on > Feb 12? Good > luck with everything, we look forward to getting to > know you! > Debbie abby's mom DOCgrad > MI > > > > Hi there. I am new to this page. My daughter was > diagnosed with > > plagio 2 months ago and just had a CT done to rule > out cranio. She > > goes for an appt on feb 12 for the DOC band. I > saw in some > pictures > > a baby doll wearing a DOC band too. I understand > a woman made this > > for her own daughter. I am wondering if any one > knows of anyone > > making such a thing. I would love to get one of > these dolls for my > > daughter so she would have a baby doll that would > look just like > > her. Thanks for the help. > > Christi > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 Marci, Thanks for the reply! Im glad I am not alone in feeling so worried. The tricare office my husband went to has been very helpfull. The doctor that suggested the DOC band warned us it would be a fight. But so far it hasnt been hard. We are waiting on one last guy to approve it. And we are supposed to hear by the end of business today. If the answer is no then the fight begins. Thanks again for the reply!! Christi --- marcisch@... wrote: > Christi, > > Hello and welcome to the group. You are in such good > company here! I think > pretty much everyone has had the same worries and > fears that you are having > right now. Will my baby adjust? Will it cause her to > lose sleep? Will people > stare and how will I handle it? Am I doing the right > thing? and so on and so > on and so on. It is normal to feel that way! Getting > the tort resolved > through PT will help alot with correcting the > plagio. It is almost impossible > to reposition when she can't really turn her head > the other way! > > We just had another military mom join the group and > as I told her it has been > my understanding that Tricare does not cover the > band. However, if you are up > for a fight, it would be worth it to appeal, appeal > and appeal again. Tricare > should cover the band just as every other insurance > company should (and often > don't). Good luck with that. > > Good luck with your appointment on 2/12/02 and let > us know how it goes. You > have come to the right place for support, advice, > answers and friendship. > We're glad to have you! > > Marci (Mom to ) > Oklahoma > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 Debbie, Thanks for the reply! I feel so much better knowing Im not the only mom out here having all these worries! Im glad to hear your daughter slept well in it because that was one of my big worries. She is such a good sleeper I was worried it would mess that up for her. The physical therapist had told me that her tort is getting so much better. And now she just has me doing home excercises with her. She doesnt go back to the pt till april which to me means she must be doing great! So I am so glad for that because before my poor baby had such a hard time looking in the one direction. Now she has almost full range of motion in her neck. Thanks for the info on decorating the bands Im sure Ill come up with some ideas of my own as well! Thanks again for the reply its really nice being able to talk to someone who knows what Im feeling and knows where Im at right now. Thanks!! Christi --- abbygator49509 <dj2kirby@...> wrote: > Christi: > Thanks so much for the add'tl information on your > daughter. > Your worries are very common. Will my baby tolerate > the band well, > etc? Most babies adjust to the band w/o any > problems. It amazes all > us parents how well our babies adjust. My daughter > adapted just > fine, she never minded her bands for one second. I > was very happy > with Abby's DOCband. She wore it from age 11.5 mos > - 15.5 mos, had > severe plagio & we were still able to receive about > 50-60% > correction, which I am thrilled with. It usually > takes us parents > much longer to adjust to seeing our baby in this > hunk of plastic, I > had a very difficult time with it for the first 2 > wks or so (my > duaghter also wore a STARband unsuccessfully for 3 > mos before her > DOCband). You'll be happy with the DOCband, they > are wonderful > people who are very well educated in treating plagio > babies . > Your daughter is also at a good younger age to see > good results. > We also have another new member who is inquiring > about Tricare > military insurance. I'm sure she'd love to hear of > any tips you > might have to getting some information on their > band/helmet coverage. > A lot of parents have the bands painted. Visit > www.plagiocephaly.org then click on decorating > ideas. > I just put stickers on Abby's bands. That way I > could change with > the seasons & such. > How is Mya's torticollis coming along? Any > improvement with the > phys. therapy thus far? My daughter did not have > tort. but a lot of > our members baby's have. > One more thing, my daughter also slept perfectly > fine while in the > bands. She slept her normal 12 hr nights & was fine > w/naps. I > couldn't beleive she didn't mind wearing the band > one bit, but try > putting a snow hat on her head & look out . > Silly kids! > Thanks so much for your story. I hope things go > well with the > Cranial Tech eval.. Be sure you hang around to keep > us updated & ask > any question! Best of luck. > Debbie Abby's mom DOCgrad > MI > > > > > > > Hi there. I am new to this page. My daughter > was > > > diagnosed with > > > > plagio 2 months ago and just had a CT done to > rule > > > out cranio. She > > > > goes for an appt on feb 12 for the DOC band. > I > > > saw in some > > > pictures > > > > a baby doll wearing a DOC band too. I > understand > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 , Thanks for the reply. Yes I have been doing the stretches for Mya's tort at home. As a matter of fact thats the only exercises shes doing right now is at home. Her PT said that she is doing so well that there is not a need for her to come in every week as long as Im still doing the excercises at home. She wants to see her back in April. She has almost full range of motion in her neck now. And she actually prefers to sleep on the oposite side now (meaning she no longer sleeps on her flat side) which is great! Thanks so much for the links! That must have been rough only being a 3 week old mom and finding out about all of this stuff. Mya is my third baby but even so this was the first I had ever heard of tort or plagio! So it sounded so weird to me when the doctor first suggested she had such a problem. I am just glad the doctors reacted the way they did because I never took it as seriously as I should. I just assumed her head would round on its own and I just thought she just preferred the one side and never gave it much thought untill it was mentioned to me by the doctor and then still after that wasnt real concerned till I found out there actually was a name for it and it was a serious thing the doctor was talking about. Then she pointed out Myas cheek on one side a little bigger and her ear and her eye and then it all seemed to come together and I finally got it! Just all of my family had said oh all babys have weird shaped heads they all round out eventually. They are all weirded out by this whole situation and some of them even suggest that the DOC band is a dumb idea. I just ignore them and let them have there own opinion because I need to do what I feel is the best for my baby. Anyway thanks again for the reply and the links. SOrry so long CHristi --- rella1234@... wrote: > Hi CMZ (my maiden name initials!) > Your fear of the unknown is worse than the reality- > we have all been there!! > As most parents here will tell you, they can't > believe how well their kids > (including mine) adjust to the band and go about > their daily routines without > interruption (there have been a few with adjustment > problems, but I haven't > seen too many posts about problems in the 8 months > I've been online here). > That is fantastic that you are getting therapy for > the tort, just keep in > mind that the tort is the cause of (probably) the > plagio, especially since it > is probably flat on the side that your daughter > favors. The stretching is > necessary daily, and aside from a professional pt, > you should be > complimenting this therapy by doing home stretching > as well. I will attach a > link for you of exercises, and please check out <A > HREF= " www.torticolliskids.org " >www.torticolliskids.org</A> > and > the torticolliskids for more help > and advice from Moms and > Dads about tips and support. > You will find yourself full of relief when the DOC > band will concentrate on > the flat spot while you can concentrate more on the > tort. At this time last > year, I was a 3 week old Mom, a month later I would > find out about tort and > two months after that, plagio. I was just as > overwhelmed, but found answers > from both of these support groups (tort and plagio). > Educate yourself, learn > from all of these great parents that have traveled > the road less traveled, > and you will find peace in knowledge, and the > understanding that this can be > treated, and it is nothing that can't be handled > with hard work, and > determination. Talk with your pt about the > stretches I will attach and ask > to help you if your confused. If you have any > questions, please feel free to > email me anytime! Good luck and please keep us > posted! > > ' Mom > <A > HREF= " http://www.orthoseek.com/articles/ifs-left.html " >Tort > stretches link</A> > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Christy, Hi! I too LOVED the banded dolls and I found the mom who had made them! I'll have to look for it, but I'm sure I have her email address.... Millie's mommy > Hi there. I am new to this page. My daughter was diagnosed with > plagio 2 months ago and just had a CT done to rule out cranio. She > goes for an appt on feb 12 for the DOC band. I saw in some pictures > a baby doll wearing a DOC band too. I understand a woman made this > for her own daughter. I am wondering if any one knows of anyone > making such a thing. I would love to get one of these dolls for my > daughter so she would have a baby doll that would look just like > her. Thanks for the help. > Christi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hi , I am interested in getting hold of the email address for the Mom with the doc band baby dolls also. Could you please post it on a message to this group when you find it? Or, email it to me personally? Thanks a bunch!!! Aimee's Mom email: tntsigns@... .. > > Hi there. I am new to this page. My daughter was diagnosed with > > plagio 2 months ago and just had a CT done to rule out cranio. She > > goes for an appt on feb 12 for the DOC band. I saw in some > pictures > > a baby doll wearing a DOC band too. I understand a woman made this > > for her own daughter. I am wondering if any one knows of anyone > > making such a thing. I would love to get one of these dolls for my > > daughter so she would have a baby doll that would look just like > > her. Thanks for the help. > > Christi Quote Link to comment Share on other sites More sharing options...
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