Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Dana, I guess I would pretty have to agree with the previous two posts. I noticed 's flat head when she was 3 months old. At her 7 month check up the doctor finally agreed it had not gotten better, instead it had gotten worse. She didn't get into the helmet until she was 9 months old. It had not improved at all. was extremely mobile so no amount of repositioning worked for us. She was walking exclusively when she was 8 1/2 months old, but even with that her head did not improve. Now, from what you say your daughter's case is mild. That would make it very tough to decide to band or not to band. If there is no facial assymetry or ear misalignment, it would make for a very difficult decision. The choice is yours no matter how your doctor feels. If you think that after a month you might still want a band, then I would reccommend getting it now. If you think that the condition is mild enough that you could live with it exactly as it is now even if there was no more improvement then maybe banding isn't something you even need to consider. It is such a personal choice - it's so hard to advise in this situation because only you know what is in your head and your heart. Go with your gut instinct. We mommys are rarely mistaken when it comes to our babies. Good luck! Marci (Mom to ) Oklahoma 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 just wanted to update you all on our appointment today and maybe get some more help. We saw the regular pediatrician and she said that it look like Jenna defintiely has mild plagiocephaly. She even called one of the other more experienced doctors in to look at her head. They said it still has time to work it's way back to normal, because she still has a soft spot. We have to take her back in a month and will see if there has been any change. She did mention the band, etc. but would like to try and see if now that she is more mobile, her head may gravitate back to normal. So my question is, for right now, does anyone have any suggestions that might help with an almost 8 month old? I have been trying to put her to sleep on the opposite side of the crib, but can anyone offer any other advice? I will take some pictures of her head to compare them with next month, but that really isn't much time to change, is it? Any advice would be greatly appreciated. Thanks! Dana & Jenna NC, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Dana: Check this link for some repositioning ideas.......... www.plagiocephaly.org/support/repotech.htm Kendra today's appointment Hi,I just wanted to update you all on our appointment today and maybe get some more help. We saw the regular pediatrician and she said that it look like Jenna defintiely has mild plagiocephaly. She even called one of the other more experienced doctors in to look at her head. They said it still has time to work it's way back to normal, because she still has a soft spot. We have to take her back in a month and will see if there has been any change. She did mention the band, etc. but would like to try and see if now that she is more mobile, her head may gravitate back to normal. So my question is, for right now, does anyone have any suggestions that might help with an almost 8 month old? I have been trying to put her to sleep on the opposite side of the crib, but can anyone offer any other advice? I will take some pictures of her head to compare them with next month, but that really isn't much time to change, is it?Any advice would be greatly appreciated. Thanks!Dana & JennaNC, USAFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Dana, You are in the same spot I was some 8 months ago! My Doc felt that ' ears were not misaligned, but rather an optical illusion from the tort. I tell you this so that when you do take a closer look, you decide for yourself what you can see and what you think is best. The mirror and pictures will be the ultimate tell-all. I knew that his ears were off just by looking, the fact that she wanted to pacify me didn't make me feel better- it made me more determined to get to the bottom of it! He also had the puffier cheek and smaller eye- all of which have since been corrected due to the band and pt for the tort. All the while during my debating period, 2 diff. peds suggested that not everyone is perfect and it will round out. Now after I decided to go the band route, the ped is all too happy to tell me it was really the best decision, and how round his head looks. Really, really listen to your heart and your head (at this point, you probably have more knowledge than some of the Docs!). I think that repositioning will work best when young, after 6 months, I think the round out theory is hard to do at that point. I have a friend with a son who has severe brachy who opted not to band, and his head at 18 months is still just as flat. He does not have any asymmetry though, which was a big factor for us in banding. If you feel comfortable playing the waiting game- that's one thing. If you feel it will nag at you because your unsure you made the right decision, go for the band. It will only help, not hurt. Good luck to you! I send you lots of luck during this hard decision making process! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Thanks everyone for the advice. The doctor said that she didn't think Jenna's ears were misaligned. I guess I will have to really look at that myself. She definitely does have some facial assymetry, one of her cheeks is noticeably fuller than the other. I am so confused becuase the thought of putting her in a band is upsetting to me, but I would do it in a heartbeat if that was what was best for her. I am going to go back through her pictures and see how far back I can notice the change. I am going to schedule her next appointment for a month from now, and if there is no change than maybe we will have to pursue other approaches. I don't even know if any repositioning would be possible for her at this point because she's almost 8 months old. I just am totally confused I guess. Dana NC, USA > Dana, > > I guess I would pretty have to agree with the previous two posts. I noticed > 's flat head when she was 3 months old. At her 7 month check up the > doctor finally agreed it had not gotten better, instead it had gotten worse. > She didn't get into the helmet until she was 9 months old. It had not > improved at all. was extremely mobile so no amount of repositioning > worked for us. She was walking exclusively when she was 8 1/2 months old, but > even with that her head did not improve. Now, from what you say your > daughter's case is mild. That would make it very tough to decide to band or > not to band. If there is no facial assymetry or ear misalignment, it would > make for a very difficult decision. The choice is yours no matter how your > doctor feels. If you think that after a month you might still want a band, > then I would reccommend getting it now. If you think that the condition is > mild enough that you could live with it exactly as it is now even if there > was no more improvement then maybe banding isn't something you even need to > consider. It is such a personal choice - it's so hard to advise in this > situation because only you know what is in your head and your heart. Go with > your gut instinct. We mommys are rarely mistaken when it comes to our babies. > > Good luck! > > Marci (Mom to ) > Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Dana: It's a very tough decision that you're faced with. Jenna's plagio is considered mild as you said, so it is possible you could get some more improvement with repositioning, but I would have to agree with the other replies, it probably won't improve. My daughter's plagio was severe & we had no luck w/repositioning. Others in our group have had good success with it. Check out the link Kendra gave you for more repositioing tips. Definitely take the photos now & in one month to compare & see if there has been any improvement. Best of luck. Let us know what happens. Debbie Abby's mom DOCgrad MI > Hi, > I just wanted to update you all on our appointment today and maybe > get some more help. We saw the regular pediatrician and she said > that it look like Jenna defintiely has mild plagiocephaly. She even > called one of the other more experienced doctors in to look at her > head. They said it still has time to work it's way back to normal, > because she still has a soft spot. We have to take her back in a > month and will see if there has been any change. She did mention the > band, etc. but would like to try and see if now that she is more > mobile, her head may gravitate back to normal. So my question is, > for right now, does anyone have any suggestions that might help with > an almost 8 month old? I have been trying to put her to sleep on the > opposite side of the crib, but can anyone offer any other advice? I > will take some pictures of her head to compare them with next month, > but that really isn't much time to change, is it? > Any advice would be greatly appreciated. Thanks! > > Dana & Jenna > NC, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Dana, I am sure you will get tons of email from parents that will tell you the band helped with the facial asymmetry. was squished inutero, so I think his plagio started there, along with the tort, and his head continued to grow in the direction that it was shaped- wrong. The band helped to bring all of his features back to where they should be growing (about 95% correction due to the age of 5 months at start of banding) and the stretching exercises for the tort allowed his facial features more "slack" as that tight muscle also pulls down things to meet it (and up, some tort kids also get the high shoulder posture, because they are pulling up the shoulder- if your child does this, let me know and I'll give you some tips). Repositioning did not work for us because would just "spring back" almost immediately- and then when he entered daycare, who knew! I just did not feel completely comfortable with this situation, and decided to let the band work on the flat spot, and we could concentrate more fully on the tort. I am by no means an expert on tort, there are so many varying degrees of severity, causes and amount of treatment, that it would be wrong to speculate as to whether your child has tort- or what others have called "tight neck muscles". I would talk with your ped, ask to check for range of motion and check for tort. Some peds make light of tort also, so be your child's best advocate and look for yourself: does he have a hard time turning one way? Does he seem to tilt his head one way (not all tort kids have the tilt)? Is he constantly on one side, no matter how often you reposition? Does the actual muscle on the side of the neck feel tight? (Its the sternomastoid?? muscle). When he turns his head, does he use his entire body? Have your ped address your concerns and if you don't get the satisfaction you think you should, ask for a referral to a specialist- like a neurologist. Luckily my ped had no problem dx the tort at 2 months and getting us onto therapy by 3 months. As for the plagio: After my ped dismissed my concerns and I signed up here with this board, I called Cranial Tech for a free eval. without my Doc knowing at 3 months- CT told me to reposition for a month to exhaust that route. At 4 mnth, looked worse, still ped said its not bad, nobody's perfect, etc. I left, but called back and said I want the referral. At that point, she was willing to do whatever I wanted (clearly she knew I did some homework). I can tell you that my ped did not want to do anything about the plagio, and I pushed for the referral. At that point, she said, "what is it that you want me to do?" "rx for the DOC band"- end of discussion. Keep in mind that your ped is working for you, and you deserve respect and understanding that you do have a brain, and that you know your child better than he/she will ever think to. Like I have said so many times, deciding whether or not to band was such a huge decision to make, and so hard, because banding is still very controversial and many Docs don't feel its necessary. Most want to take the wait and see approach, and when you do, sometimes its still not corrected- but therein lies the catch- so now you've missed a good window of opportunity. So, knowing this, and taking advantage of having hundreds of experienced parents on this site tell me that time is of the essence, was in his band fairly early in his little life despite the disconcern of his ped. Now she is sooo thrilled that we did it and says we did the right thing! His ears were severely misaligned and now they are pretty well aligned. My advice to you is to educate yourself, take pics, focus on the pros and cons, and make an educated decision based on what YOU think. If it takes getting a 2nd opinion, do it. Good luck to you and I send you lots of luck during this trying period. Just remember that whatever you decide, this group supports you no matter what! We've all been through or are going through what you are! ' Mom (DOC grad, tort resolved) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Kelli, I still use the same ped- because she was quick on spotting the tort at 2mnths- which many Docs don't- so I give her credit there- and she is very personable, very likeable, and she really isn't the type to be so adamant about something- that's why I think she went ahead with the referral (he was only 4 months when she did it- I think she may have decided to go ahead later with the band, when all else failed because they did have some kids already using the DOC band, so it wasn't unfamiliar territory). She could have flat out refused, so I guess the fact that she listened to my concerns counts for something to me. I do remember telling her that I learned so much online, and she was a little leary about that- like- I was getting brainwashed or something. But the neuro did admit to me he didn't know everything, and if you can learn things online, why not! I think he felt guilty for not giving me ANY direction. The nuero was clueless of the band, so he got a little education when showed up wearing it! So, I still use the same ped because she generally seems honest-AND- maybe she sees the error of her ways by constantly complimenting his head when we are there. But I know how you feel, I always felt like a Ms. Know-It-All when she threw terms out that I understood and told her what I read, or heard or knew. Let's face it, most Docs don't want to go to school for 12 years to find out you learned what they did online! I found the best way is to just say matter of factly what you know, and gauge the response for sarcasm or openness. If she was not "open" to my discussions, we would not be going back for more of the same. I'm still a new mom learning all the ropes, so I don't think you get much credit from the Docs at first glance because they think your paranoid. If you go in armed to the teeth, they can't do anything but listen. Good luck in educating your Doc, let me know if you have a few pointers yourself! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 , So the band would help with the facial assymetry? I didn't even think to ask about the tort while I was there. I guess I wasn't as prepared as I thought. I'm not sure I believe that the " rounding out " will work. And I really can't think of any other ways to reposition her at this age that would help. I really likes the doctor we saw and all, but I'm not sure, it seemed like they were only going to be willing to do something if her condition got worse.I already scheduled her follow-up appointment for March 5th, which is about a month. I just want to do what's best for her. Dana NC, USA > Dana, > You are in the same spot I was some 8 months ago! My Doc felt that ' > ears were not misaligned, but rather an optical illusion from the tort. I > tell you this so that when you do take a closer look, you decide for yourself > what you can see and what you think is best. The mirror and pictures will be > the ultimate tell-all. I knew that his ears were off just by looking, the > fact that she wanted to pacify me didn't make me feel better- it made me more > determined to get to the bottom of it! He also had the puffier cheek and > smaller eye- all of which have since been corrected due to the band and pt > for the tort. All the while during my debating period, 2 diff. peds > suggested that not everyone is perfect and it will round out. Now after I > decided to go the band route, the ped is all too happy to tell me it was > really the best decision, and how round his head looks. Really, really > listen to your heart and your head (at this point, you probably have more > knowledge than some of the Docs!). I think that repositioning will work best > when young, after 6 months, I think the round out theory is hard to do at > that point. I have a friend with a son who has severe brachy who opted not > to band, and his head at 18 months is still just as flat. He does not have > any asymmetry though, which was a big factor for us in banding. > If you feel comfortable playing the waiting game- that's one thing. If you > feel it will nag at you because your unsure you made the right decision, go > for the band. It will only help, not hurt. Good luck to you! I send you > lots of luck during this hard decision making process! > > ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 , tell me this. Do you use the same Ped? Does she now realize her error? Did she listen to you when you tried to educate her more about Plagio and Tort? I gave our new Ped a bunch of stuff about Plagio, he seemed so clueless. I just wonder if I'm blowing steam into the air. I just wanted him to be more open about it, so if he does see it again, in someone elses child to refer them to a specialist. How do I go about educating him without seeming the know it all. Kelli __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 , Thanks so much for all the information. Right now I am so confused, I don't know what the right thing to do is. So you went for an evaluation without the pediatrician knowing? Is that normal? I know that with our insurance we have to get the referral from the doctor or any appointment is not covered. I was just wondering if it would be worth it to take her for the evaluation if I am allowed to do that. I mean, the people there are specialists, right? I know the closest one is 6 hours away, but I'd do it for her. What do you think? Dana > Dana, > I am sure you will get tons of email from parents that will tell you the band > helped with the facial asymmetry. was squished inutero, so I think > his plagio started there, along with the tort, and his head continued to grow > in the direction that it was shaped- wrong. The band helped to bring all of > his features back to where they should be growing (about 95% correction due > to the age of 5 months at start of banding) and the stretching exercises for > the tort allowed his facial features more " slack " as that tight muscle also > pulls down things to meet it (and up, some tort kids also get the high > shoulder posture, because they are pulling up the shoulder- if your child > does this, let me know and I'll give you some tips). Repositioning did not > work for us because would just " spring back " almost immediately- and > then when he entered daycare, who knew! I just did not feel completely > comfortable with this situation, and decided to let the band work on the flat > spot, and we could concentrate more fully on the tort. > I am by no means an expert on tort, there are so many varying degrees of > severity, causes and amount of treatment, that it would be wrong to speculate > as to whether your child has tort- or what others have called " tight neck > muscles " . I would talk with your ped, ask to check for range of motion and > check for tort. Some peds make light of tort also, so be your child's best > advocate and look for yourself: does he have a hard time turning one way? > Does he seem to tilt his head one way (not all tort kids have the tilt)? Is > he constantly on one side, no matter how often you reposition? Does the > actual muscle on the side of the neck feel tight? (Its the sternomastoid?? > muscle). When he turns his head, does he use his entire body? Have your ped > address your concerns and if you don't get the satisfaction you think you > should, ask for a referral to a specialist- like a neurologist. Luckily my > ped had no problem dx the tort at 2 months and getting us onto therapy by 3 > months. > As for the plagio: > After my ped dismissed my concerns and I signed up here with this board, I > called Cranial Tech for a free eval. without my Doc knowing at 3 months- CT > told me to reposition for a month to exhaust that route. At 4 mnth, looked > worse, still ped said its not bad, nobody's perfect, etc. I left, but called > back and said I want the referral. At that point, she was willing to do > whatever I wanted (clearly she knew I did some homework). I can tell you > that my ped did not want to do anything about the plagio, and I pushed for > the referral. At that point, she said, " what is it that you want me to do? " > " rx for the DOC band " - end of discussion. Keep in mind that your ped is > working for you, and you deserve respect and understanding that you do have a > brain, and that you know your child better than he/she will ever think to. > Like I have said so many times, deciding whether or not to band was such a > huge decision to make, and so hard, because banding is still very > controversial and many Docs don't feel its necessary. Most want to take the > wait and see approach, and when you do, sometimes its still not corrected- > but therein lies the catch- so now you've missed a good window of > opportunity. So, knowing this, and taking advantage of having hundreds of > experienced parents on this site tell me that time is of the essence, > was in his band fairly early in his little life despite the > disconcern of his ped. Now she is sooo thrilled that we did it and says we > did the right thing! His ears were severely misaligned and now they are > pretty well aligned. > My advice to you is to educate yourself, take pics, focus on the pros and > cons, and make an educated decision based on what YOU think. If it takes > getting a 2nd opinion, do it. Good luck to you and I send you lots of luck > during this trying period. Just remember that whatever you decide, this > group supports you no matter what! We've all been through or are going > through what you are! > > ' Mom (DOC grad, tort resolved) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 , Thanks for a great update! :-) Can't wait to see pics of Tiernan. Please keep us posted on his progress. --- In Plagiocephaly , " tiernansmum " <mrtsmama@h...> wrote: > Hi! Update on Tiernan... > He had his first adjustemnt today since getting his DOCband... it > went so smoothly this past week, it has been AWESOME!!! They said > his head grew a little and she thought she saw that the back of his > head looked a teensy bit better, so Go Mr T!!!! > Had lunch up there with a friend after the appointment, and we don't > go back for another two weeks!!! Still super duper excited over all > of this!!! Life is good, girls. Life is good!!! > I'm going to see if i can put a pic of T in the gallery... we'll > see... look there for him! > > Steph > mommy to Tiernan, starband dropout, DOCbanded 4/29/2003 > ton, SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 HELLOOOOOOOOO!!! Girl, you are just so full of good news these days!! I still love. Grow Mr. T!! Dustie --- In Plagiocephaly , " tiernansmum " <mrtsmama@h...> wrote: > Hi! Update on Tiernan... > He had his first adjustemnt today since getting his DOCband... it > went so smoothly this past week, it has been AWESOME!!! They said > his head grew a little and she thought she saw that the back of his > head looked a teensy bit better, so Go Mr T!!!! > Had lunch up there with a friend after the appointment, and we don't > go back for another two weeks!!! Still super duper excited over all > of this!!! Life is good, girls. Life is good!!! > I'm going to see if i can put a pic of T in the gallery... we'll > see... look there for him! > > Steph > mommy to Tiernan, starband dropout, DOCbanded 4/29/2003 > ton, SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 Well thank you dustie!! He can keep growing, just as long as he doesn't grow TOOOO fast... he's such a little peanut. Iput up a new picture in his folder, I'll try to put more in there today, but still don't have any new ones of him in his PERFECT DOCband!!! I'll hurry my hiney up in getting some of those in there!!! lol... Steph mommy to Tiernan, starband dropout, DOCbanded 4/39/03 ton, SC > > Hi! Update on Tiernan... > > He had his first adjustemnt today since getting his DOCband... it > > went so smoothly this past week, it has been AWESOME!!! They said > > his head grew a little and she thought she saw that the back of his > > head looked a teensy bit better, so Go Mr T!!!! > > Had lunch up there with a friend after the appointment, and we > don't > > go back for another two weeks!!! Still super duper excited over > all > > of this!!! Life is good, girls. Life is good!!! > > I'm going to see if i can put a pic of T in the gallery... we'll > > see... look there for him! > > > > Steph > > mommy to Tiernan, starband dropout, DOCbanded 4/29/2003 > > ton, SC Quote Link to comment Share on other sites More sharing options...
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