Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Hi Kathleen, You can take it off and on if you need to. A lot of our daughter's clothes fit over her head with it on, but for some we have to take if off. As for her ear, I guess it means the band is slipping if it is moving her ear. If it gets red or you think it is hurting her I would call the ortho. Our band is cut a little bigger than her ears, so we don't really have this problem. If it doesn't seem to bother her you could wait until your first adjustment and then ask. I've heard the band shouldn't slip more than 1 inch. If it seem like it is " too big " I would try and go in for a check. When we had our band for a week I wasn't sure it was fitting properly and went in. The ortho thought I was overly cautious, but it made me feel better to know it was ok. Good luck and welcome to the group. -christine mom to sydney/ 7 mo/ starband 5-31-06 > > Hi everyone! > > Our daughter, Abigail, began wearing her StarBand Helmet on Tuesday. I > think it has definately been tougher on Mom and Dad than Abby! > > I have a few questions and would like some advice... > > If you want/need to change clothes in the middle of the day do you just > take it off, change her and put it right back on? > > When she moves around a lot it hits her left ear and folds it in. Has > anyone else experienced that? Is it normal? > > Thanks! > > Abby's Mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Welcome !!!!!! I know just how you feel!!!!!!!! It was so sad when I looked at my dd in her band at 1st!!!!!!!! I felt it changed her whole appearance and she just didn't look like our adorable baby anymore! But I have to say that now that she has been in it for almost 2 months - The time has FLOWN by and she looks naked w/out it!!!! I think she is so cute in it and I proudly take her everywhere showing her off! It really was one of the best things we've done - I'm so glad we have the option to help our babies!!!! JEN Mommy to 4...and 1 more!!!! Luli - Tort/Plagio - Hanger Band - CA "Luli" www.babiesonline.com/babies/j/jens5th/` Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Hi ,Welcome to the group! Where do you live and what kind of helmet will your son be getting? I know it's hard at first... all of us who have been there can tell you that it's probably a lot harder on us than it is on our little ones. They're so young and adaptable that they get used to it quickly and most of the time they seem to forget that they even have it on-- and though it's hard to believe right now, so will you sometimes. My daughter is 10 months old and will be done with her STARband next week after wearing it for a little over 2 months. Believe me, it was hard at first but I'm SO glad we went through with it (even though our insurance didn't pay). It would have been great if your pediatrician had realized that it wouldn't "correct itself" and had referred you earlier, but your son definitely isn't too old to benefit from helmet treatment. Good luck and feel free to "vent" as much as you need to-- this is a great group and there are lots of people here with different experiences who will gladly lend an ear and/or answer your questions. Alison mom to Leila, born 9/25/05 (tort/plagio, STARband 6/5/06) Boynton Beach, FL Plagiocephaly From: k2prasse@...Date: Tue, 8 Aug 2006 14:33:59 +0000Subject: new plagio mom Hello. My son is 9 months old and is just now getting a helmet. We noticed almost right away that his head was "coney" but our ped. reassured us it would round out. Becuase he spent so much time on his back his head never rounded out, infact it got worse. Our ped. always told us at EVERY visit not to worry...no he idin't need a helmet, no he didn't need to visit a specialist, etc. Finally at 7 months, we began to realize it would not correct itself. We took him to a cranio specialist and he said our only option because of his late age was a helmet. He had his first fitting yesterday. I cried on and off the entire fitting. Dylan was screaming and he just looks so different with the helmet on. I don't know how to cuddle him with it on. I don't want him to be uncomfortable. Just wondering if it is really worth it. My husband and I are really struggling and looking for support form other plagio parents. Thank you, Express yourself instantly with Windows Live Messenger! Windows Live Messenger! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 , How did Dylan's first night go with the helmet on or did you take it off at night? We get our helmet (Docband) tomorrow, Wednesday, and I am really not looking forward to it. I've wondered about how I am going to cuddle with her and nurse her with it on too... Let me know how it's going because I am about to go through the same thing. Just know you are not alone and I've been told to look at the big picture and know it will be such a small part of his and your lives. I've been holding back the tears all along knowing this is coming. Hang in there and please report how he's adjusting. Everyone, Also, I've heard of a lot of people in this support group taking their babies to PT for tort. The orthotist and pediatrician did NOT suggest PT for my baby (even though I specifically asked for a referral to a PT from the ped) and they just said to do stretches at home. How do you know if your stretches are working? Does the orthotist check the progress of the tort too? Does the tort usually get better by the time the helmets are off so that the flatness doesn't come back? How can you track the progress of this?? I keep hearing of the helmets/bands rubbing on ears and making eyes squinty and all that... since we are getting ours on tomorrow, should I be asking for them to adjust it away from those areas right away up front? I'm scared and nervous about this and hope I'm not the only one feeling that way. My little girl has the pretties little red curls in her hair and I will soooo miss seeing them all the time! This is tough and I'm glad this support group is here... Thanks, Deanna (daughter Charlene Plag/Tort, getting band tomorrow at 5 3/4 mos old) >>> k2prasse@... 8/8/2006 7:33:59 AM >>> Hello. My son is 9 months old and is just now getting a helmet. We noticed almost right away that his head was " coney " but our ped. reassured us it would round out. Becuase he spent so much time on his back his head never rounded out, infact it got worse. Our ped. always told us at EVERY visit not to worry...no he idin't need a helmet, no he didn't need to visit a specialist, etc. Finally at 7 months, we began to realize it would not correct itself. We took him to a cranio specialist and he said our only option because of his late age was a helmet. He had his first fitting yesterday. I cried on and off the entire fitting. Dylan was screaming and he just looks so different with the helmet on. I don't know how to cuddle him with it on. I don't want him to be uncomfortable. Just wondering if it is really worth it. My husband and I are really struggling and looking for support form other plagio parents. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Hello and welcome. Hang in there... it gets easier. Yes yes yes... it is SOOO worth it! You will be so gald that you did this for him. In the beginning it can be tough, but when you see the improvements, you will look back and have absolutely no regrets. Good luck and keep us updated. Jen (24 mo), tort resolved, Hanger Band Grad (4.5 years) > > Hello. My son is 9 months old and is just now getting a helmet. We > noticed almost right away that his head was " coney " but our ped. > reassured us it would round out. Becuase he spent so much time on his > back his head never rounded out, infact it got worse. Our ped. always > told us at EVERY visit not to worry...no he idin't need a helmet, no > he didn't need to visit a specialist, etc. Finally at 7 months, we > began to realize it would not correct itself. We took him to a cranio > specialist and he said our only option because of his late age was a > helmet. > He had his first fitting yesterday. I cried on and off the entire > fitting. Dylan was screaming and he just looks so different with the > helmet on. I don't know how to cuddle him with it on. I don't want him > to be uncomfortable. Just wondering if it is really worth it. My > husband and I are really struggling and looking for support form other > plagio parents. > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Hi Deanna,Regarding the tort, I would definitely say you should get a referral for PT. We've been going to PT twice a week (30 min sessions) since my daughter was 4 months old (she's now 10 months old and will be done with her helmet next week after having it for 2 1/2 months) and will most likely continue until she's walking (then go for monthly follow-ups until she's 2 yrs old). I know that if it weren't for our physical therapist I probably would have given up on the stretches a long time ago-- first of all, because there are times when your child will fuss and cry and you just won't want to do it (our PT is great at motivating us!) and secondly because the type of exercises/stretches that you'll do changes over time as your child grows and develops and without a physical therapist to instruct you it would be difficult. Our physical therapist also frequently points things out to me that I don't even notice (like my daughter's subtle tilt and how she compensates for it) and has done a terrific job explaining the various muscles that are involved and how to stretch them. Even though she's getting her helmet off it is more important than ever for us to continue with the PT and stretches so that the asymmetry doesn't return. The orthotist can and most likely will check on the progress of your daughter's tort (I know ours has encouraged us to keep up the stretching) but since you'll probably only be seeing him/her about every 2 weeks for a couple of minutes I don't think that it could be considered a substitute for PT. A good physical therapist can also help you spot other things of concern that can be associated with tort, such as scoliosis, developmental delays, etc... that an orthotist or pediatrician might not notice (since they don't see your child as regularly and don't always know what to look for). Alisonmom to Leila, born 9/25/05 (tort/plagio, STARband 6/5/06)Boynton Beach, FL Plagiocephaly From: drantz@...Date: Tue, 8 Aug 2006 09:49:16 -0700Subject: Re: new plagio mom ,How did Dylan's first night go with the helmet on or did you take itoff at night? We get our helmet (Docband) tomorrow, Wednesday, and I amreally not looking forward to it. I've wondered about how I am going tocuddle with her and nurse her with it on too... Let me know how it'sgoing because I am about to go through the same thing. Just know you arenot alone and I've been told to look at the big picture and know it willbe such a small part of his and your lives. I've been holding back thetears all along knowing this is coming. Hang in there and please reporthow he's adjusting.Everyone,Also, I've heard of a lot of people in this support group taking theirbabies to PT for tort. The orthotist and pediatrician did NOT suggest PTfor my baby (even though I specifically asked for a referral to a PTfrom the ped) and they just said to do stretches at home. How do youknow if your stretches are working? Does the orthotist check theprogress of the tort too? Does the tort usually get better by the timethe helmets are off so that the flatness doesn't come back? How can youtrack the progress of this?? I keep hearing of the helmets/bands rubbing on ears and making eyessquinty and all that... since we are getting ours on tomorrow, should Ibe asking for them to adjust it away from those areas right away upfront? I'm scared and nervous about this and hope I'm not the only one feelingthat way. My little girl has the pretties little red curls in her hairand I will soooo miss seeing them all the time! This is tough and I'mglad this support group is here... Thanks,Deanna (daughter Charlene Plag/Tort, getting band tomorrow at 5 3/4 mosold)>>> k2prasse 8/8/2006 7:33:59 AM >>>Hello. My son is 9 months old and is just now getting a helmet. We noticed almost right away that his head was "coney" but our ped. reassured us it would round out. Becuase he spent so much time on his back his head never rounded out, infact it got worse. Our ped. always told us at EVERY visit not to worry...no he idin't need a helmet, no he didn't need to visit a specialist, etc. Finally at 7 months, we began to realize it would not correct itself. We took him to a cranio specialist and he said our only option because of his late age was a helmet. He had his first fitting yesterday. I cried on and off the entire fitting. Dylan was screaming and he just looks so different with the helmet on. I don't know how to cuddle him with it on. I don't want himto be uncomfortable. Just wondering if it is really worth it. My husband and I are really struggling and looking for support form otherplagio parents. Thank you, With MSN Spaces email straight to your blog. Upload jokes, photos and more. It's free! It's free! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Deanna, I have a 4.5 month old and he has mild tort and mild-moderate plagio/brachy. I don’t go to a PT, but I do some stretches with him and I hold him on the opposite hip so he is forced to look that way a little more, I turn him a certain angle away from the tv so he is forced to look the hard way (I only allow tv BECAUSE of the tort0. It seems to be working for us, but I still have concerns, I think that one side of his body is actually weaker than the other, etc… I would say if it is any worse than very mild, I would go to a PT, just so that he can catch certain things and so he can modify what you’re doing. As far as being sad not to see her curls, I worry about those things too. I am repositioning him for now and in a couple months we will think about the helmet. But I am reminded of my first baby who had cradle cap SO badly! I felt so bad for him because he had beautiful curly hair and the cradle cap was disgusting. But now I hardly remember it and when I see pictures, I am just nostalgic. He doesn’t remember and certainly didn’t care. So I am hoping this will be the same way, a couple of months that may not necessarily go fast, but will seem like such a short time after it’s over with. Good luck! Theresa Re: new plagio mom , How did Dylan's first night go with the helmet on or did you take it off at night? We get our helmet (Docband) tomorrow, Wednesday, and I am really not looking forward to it. I've wondered about how I am going to cuddle with her and nurse her with it on too... Let me know how it's going because I am about to go through the same thing. Just know you are not alone and I've been told to look at the big picture and know it will be such a small part of his and your lives. I've been holding back the tears all along knowing this is coming. Hang in there and please report how he's adjusting. Everyone, Also, I've heard of a lot of people in this support group taking their babies to PT for tort. The orthotist and pediatrician did NOT suggest PT for my baby (even though I specifically asked for a referral to a PT from the ped) and they just said to do stretches at home. How do you know if your stretches are working? Does the orthotist check the progress of the tort too? Does the tort usually get better by the time the helmets are off so that the flatness doesn't come back? How can you track the progress of this?? I keep hearing of the helmets/bands rubbing on ears and making eyes squinty and all that... since we are getting ours on tomorrow, should I be asking for them to adjust it away from those areas right away up front? I'm scared and nervous about this and hope I'm not the only one feeling that way. My little girl has the pretties little red curls in her hair and I will soooo miss seeing them all the time! This is tough and I'm glad this support group is here... Thanks, Deanna (daughter Charlene Plag/Tort, getting band tomorrow at 5 3/4 mos old) >>> k2prasse 8/8/2006 7:33:59 AM >>> Hello. My son is 9 months old and is just now getting a helmet. We noticed almost right away that his head was " coney " but our ped. reassured us it would round out. Becuase he spent so much time on his back his head never rounded out, infact it got worse. Our ped. always told us at EVERY visit not to worry...no he idin't need a helmet, no he didn't need to visit a specialist, etc. Finally at 7 months, we began to realize it would not correct itself. We took him to a cranio specialist and he said our only option because of his late age was a helmet. He had his first fitting yesterday. I cried on and off the entire fitting. Dylan was screaming and he just looks so different with the helmet on. I don't know how to cuddle him with it on. I don't want him to be uncomfortable. Just wondering if it is really worth it. My husband and I are really struggling and looking for support form other plagio parents. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Hi : My daughter started out with a " coney " head as well. We got the same line from our pediatrician but it is so worth it. Even a little bit of correction makes a world of difference. My daughter is normally pretty easy going but the fitting was not easy. Now she is very used to her band. It took about 1 to 2 weeks. I used to rush through her bath so I could get in 5-10 minuites of snuggle time, but in time you will have just as easy a time snuggling with the helmet on. For me it took about 2 weeks, now I'm so used to seeing my daughter with the helmet on I have to get used to her with it off Hang in there. It really does get easier. DD DocBand since 7/7/06 > > Hello. My son is 9 months old and is just now getting a helmet. We > noticed almost right away that his head was " coney " but our ped. > reassured us it would round out. Becuase he spent so much time on his > back his head never rounded out, infact it got worse. Our ped. always > told us at EVERY visit not to worry...no he idin't need a helmet, no > he didn't need to visit a specialist, etc. Finally at 7 months, we > began to realize it would not correct itself. We took him to a cranio > specialist and he said our only option because of his late age was a > helmet. > He had his first fitting yesterday. I cried on and off the entire > fitting. Dylan was screaming and he just looks so different with the > helmet on. I don't know how to cuddle him with it on. I don't want him > to be uncomfortable. Just wondering if it is really worth it. My > husband and I are really struggling and looking for support form other > plagio parents. > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Hi , you'll get tons of support here because it is definitely worth it. I cried after her first scan (to make the band), but after that was really sure of my decision and her head has responded so well. We have had great results and I'm sure you will too. I don't know how we educate all the pediatricians that this will not " fix itself " . I brought mine a guide to repositioning and told her she should give it to parents at 2 mo check if the head is starting to flatten. She was receptive. Too bad she didn't know sooner. good luck, it will get easier and you'll see results soon -christine mom to sydney/ 7 mo /starband 5-31-06 > > Hello. My son is 9 months old and is just now getting a helmet. We > noticed almost right away that his head was " coney " but our ped. > reassured us it would round out. Becuase he spent so much time on his > back his head never rounded out, infact it got worse. Our ped. always > told us at EVERY visit not to worry...no he idin't need a helmet, no > he didn't need to visit a specialist, etc. Finally at 7 months, we > began to realize it would not correct itself. We took him to a cranio > specialist and he said our only option because of his late age was a > helmet. > He had his first fitting yesterday. I cried on and off the entire > fitting. Dylan was screaming and he just looks so different with the > helmet on. I don't know how to cuddle him with it on. I don't want him > to be uncomfortable. Just wondering if it is really worth it. My > husband and I are really struggling and looking for support form other > plagio parents. > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 The more uncomfortable you are with him the more he is going to be with it. He is still your little baby. Try to decorate it or do something fun to make it look more comfortable. <http://www.tickercentral.com> new plagio mom Hello. My son is 9 months old and is just now getting a helmet. We noticed almost right away that his head was " coney " but our ped. reassured us it would round out. Becuase he spent so much time on his back his head never rounded out, infact it got worse. Our ped. always told us at EVERY visit not to worry...no he idin't need a helmet, no he didn't need to visit a specialist, etc. Finally at 7 months, we began to realize it would not correct itself. We took him to a cranio specialist and he said our only option because of his late age was a helmet. He had his first fitting yesterday. I cried on and off the entire fitting. Dylan was screaming and he just looks so different with the helmet on. I don't know how to cuddle him with it on. I don't want him to be uncomfortable. Just wondering if it is really worth it. My husband and I are really struggling and looking for support form other plagio parents. Thank you, For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 My son was in daycare with his helmet and none of the kids seemed to give it a second thought. Even the older kids in my daughter's class didn't say much, except to maybe ask what it was for. Connor (PPO helmet grad 8/04, tort resolved, mild craniofacial microsomia) > > > > Hello. My son is 9 months old and is just now getting a helmet. > We > > noticed almost right away that his head was " coney " but our ped. > > reassured us it would round out. Becuase he spent so much time on > his > > back his head never rounded out, infact it got worse. Our ped. > always > > told us at EVERY visit not to worry...no he idin't need a helmet, > no > > he didn't need to visit a specialist, etc. Finally at 7 months, we > > began to realize it would not correct itself. We took him to a > cranio > > specialist and he said our only option because of his late age was > a > > helmet. > > He had his first fitting yesterday. I cried on and off the entire > > fitting. Dylan was screaming and he just looks so different with > the > > helmet on. I don't know how to cuddle him with it on. I don't want > him > > to be uncomfortable. Just wondering if it is really worth it. My > > husband and I are really struggling and looking for support form > other > > plagio parents. > > Thank you, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 I hate to admit it but I think I am expecting the worse from others and I shouldn't. I have always been told that I am a pessimist so I guess that I just proved it again to myself. I am truly expecting great results from the DOC band so thanks for all the great support and information here! > > > > > > Hello. My son is 9 months old and is just now getting a helmet. > > We > > > noticed almost right away that his head was " coney " but our ped. > > > reassured us it would round out. Becuase he spent so much time on > > his > > > back his head never rounded out, infact it got worse. Our ped. > > always > > > told us at EVERY visit not to worry...no he idin't need a helmet, > > no > > > he didn't need to visit a specialist, etc. Finally at 7 months, we > > > began to realize it would not correct itself. We took him to a > > cranio > > > specialist and he said our only option because of his late age was > > a > > > helmet. > > > He had his first fitting yesterday. I cried on and off the entire > > > fitting. Dylan was screaming and he just looks so different with > > the > > > helmet on. I don't know how to cuddle him with it on. I don't want > > him > > > to be uncomfortable. Just wondering if it is really worth it. My > > > husband and I are really struggling and looking for support form > > other > > > plagio parents. > > > Thank you, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 My 6 month old was just diagnosed with the plagio and torticollis. I was wondering, what the 'experienced' plagio parents tell strangers who ask about the helmet, and what are the things that people have said about it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Hi, and welcome to the group. there were tons of messages a few days ago with the subject line " How Should I Deal With Strangers' Reactions " . if go to the Messages area you can search by this subject line, and see lots of responses. My daughter was in a starband for 5 mo. Usually I just said " her head is flat and this is helping round it out " . sometime they got it and sometimes they asked more questions. it can be frustrating some days, but after the first few times out it is really no big deal. the babies all look cute, since that is what babies are best at. good luck with your little one. will you be getting a band for your baby soon? -christine mom to sydney/ 14 mo/ starband grad 10-06 > > My 6 month old was just diagnosed with the plagio and torticollis. I > was wondering, what the 'experienced' plagio parents tell strangers > who ask about the helmet, and what are the things that people have > said about it? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Hi! Welcome! Check back through the posts over the last week. Someone else just posted this question and got a lot of great replies. I generally keep it simple and tell them my son couldn't look left when he was born and developed a flat spot which the helmet is rounding out. I've had a few rude stares, but no rude comments. Most people are just curious, but afraid to ask. Sheila, mom to , 17 months, DOCband > > My 6 month old was just diagnosed with the plagio and torticollis. I > was wondering, what the 'experienced' plagio parents tell strangers > who ask about the helmet, and what are the things that people have > said about it? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 He has been in for the consult at TX Children's hospital and they said yes, he has moderate plagio which makes the left side of his head flat and torticollis on the right sideof his neck. They sent me to an orthotist who took some initial measurements to start the insurance approval process for the helmet. He said that could take about a month. We have been taking in for physical therapy once a week and we do exercises 5-6 times a day. I am really protective of him and I'm worried about not being able to come up with a polite response if somebody says anything inappropriate or rude. > > > > My 6 month old was just diagnosed with the plagio and torticollis. I > > was wondering, what the 'experienced' plagio parents tell strangers > > who ask about the helmet, and what are the things that people have > > said about it? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 don't worry, you don't need to be polite to people who are rude :-) actually very few people say anything rude. most likely it will just be people looking and afraid to ask. you can either ignore them or just tell them what is going on. most people are very nice about it, but a little uneducated. -christine > > > > > > My 6 month old was just diagnosed with the plagio and > torticollis. I > > > was wondering, what the 'experienced' plagio parents tell > strangers > > > who ask about the helmet, and what are the things that people > have > > > said about it? > > > > > > Quote Link to comment Share on other sites More sharing options...
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