Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Dina- Grace too had some problems when we first got her helmet. It shifted around and would drop down below her eyes. It drove me nuts. (We had a locally made helmet) But after going in and getting some shaved off the front and once her head started to grow the helmet fit so much better. Our orthotist too said that the helmet can't fit when then first put it on because the head shape is incorrect so they want the head to grow to fit the helmet so shifting is normal. And once her head started to round out and grow into the helmet we have not had a shifting problem. It just took a good growth spurt with her head for the helmet to start to reallly work! Hope that makes sense I started rambling there! ha ha -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Hi Dina and - I have heard of bands being remade but I cant comment on it because I am not all that familiar so I hope another Mom will. I am glad this is one seems to be working well and I am sure you will see improvement. Does Em always keep her cheek to the right??? 3 weeks will fly by-good luck! Beck Mom to doc grad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Hi everyone, My daughter got her StarBand on 1/25/01. At the beginning all seemed to be going smoothly. She adjusted quickly and so did we. Butm then, the band started to seem loose and kept rotating some what. Anyway, we kept going back for adjustments and then it was too tight. got a nasty blister on her head over her ear and she couldn't wear the band for an entire week. My orthotist decided to make her a brand new band from her original casting. He said that instead of keep adding pading and shaving parts away he wanted to start over. He was unaware of how severe to her right she kept her head while she slept. is a 10 hour sleeper and literally keeps her right cheeck to the mattress. He said this caused some shifting in the band's foam. I do trust this guy. He's credinatials are great and he seems to treat a lot of babies with bands. received her new band on Monday. So far, ok. She had lots of trouble sleeping last night but hopefully that will pass. It also seems a little loose but he said as long as it doesn't cover her eyes it's fine. He said her head to hard to fit because of the shape. Has anyone had/heard of any similiar experience where they got a new band because it didn't fit right? Now, we have our graduation countdown over and the first 3 weeks are a wash out. As always, thanks for listening! Dina and 7 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Dina: I've actually heard of several babies receiving all new helmets/bands because the original wasn't quite right. Consider yourselves lucky that your ortho took the initiative and did it early on, rather than fussing and fussing with the old one for several weeks, or even months. Now you should be on the smooth road to roundness! ) Kendra Getting Discouraged Hi everyone,My daughter got her StarBand on 1/25/01. At the beginning all seemed to be going smoothly. She adjusted quickly and so did we. Butm then, the band started to seem loose and kept rotating some what. Anyway, we kept going back for adjustments and then it was too tight. got a nasty blister on her head over her ear and she couldn't wear the band for an entire week. My orthotist decided to make her a brand new band from her original casting. He said that instead of keep adding pading and shaving parts away he wanted to start over. He was unaware of how severe to her right she kept her head while she slept. is a 10 hour sleeper and literally keeps her right cheeck to the mattress. He said this caused some shifting in the band's foam. I do trust this guy. He's credinatials are great and he seems to treat a lot of babies with bands. received her new band on Monday. So far, ok. She had lots of trouble sleeping last night but hopefully that will pass. It also seems a little loose but he said as long as it doesn't cover her eyes it's fine. He said her head to hard to fit because of the shape.Has anyone had/heard of any similiar experience where they got a new band because it didn't fit right? Now, we have our graduation countdown over and the first 3 weeks are a wash out.As always, thanks for listening!Dina and 7 monthsFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Dina: It sounds like a good thing that your orthotist went ahead & got a new band. I wish Abby & I had been so lucky when we had our STARband troubles a year ago, then maybe Abby would have had some success. I understand how frustrated you are - now you're right back where you started, but you & your orthotist addressed the issue promptly. If he would have left her in her old band, you would have probably continued to waste precious time & the band could have actually done more harm than good if the fit was that bad. Most bands are loose for the first week or 2, they make them loose to allow room for the child to grow into them. Usually after a wk or so the band isn't nearly as loose as before. Did you ever say if has torticollis?? I ask only because of the way she sleeps so sound with her head turned. Has she ever been evaluated for tort? You might want to address this with your ped.. Does she have a tilt while she is awake too? I know you're discouraged & frustrated (I've been there!) but hopefully this new band will do it's thing & round out 's pretty head. I hope you start to see some improvement soon. Keep us updated. Best of luck :-) Debbie Abby's mom DOCGrad MI > Hi everyone, > My daughter got her StarBand on 1/25/01. At the beginning all > seemed to be going smoothly. She adjusted quickly and so did we. > Butm then, the band started to seem loose and kept rotating some > what. Anyway, we kept going back for adjustments and then it was too > tight. got a nasty blister on her head over her ear and she > couldn't wear the band for an entire week. My orthotist decided to > make her a brand new band from her original casting. He said that > instead of keep adding pading and shaving parts away he wanted to > start over. He was unaware of how severe to her right she kept her > head while she slept. is a 10 hour sleeper and literally keeps > her right cheeck to the mattress. He said this caused some shifting > in the band's foam. I do trust this guy. He's credinatials are great > and he seems to treat a lot of babies with bands. > received her new band on Monday. So far, ok. She had lots of > trouble sleeping last night but hopefully that will pass. It also > seems a little loose but he said as long as it doesn't cover her eyes > it's fine. He said her head to hard to fit because of the shape. > Has anyone had/heard of any similiar experience where they got a new > band because it didn't fit right? Now, we have our graduation > countdown over and the first 3 weeks are a wash out. > As always, thanks for listening! > Dina and 7 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Hi Debbie, Thanks for your response. Yes, has left torticollis. She was diagnosed at 4 months after I insisted something was wrong for 3 months. She was breech and looking back at photos she came out favoring the right side. She has been in theraphy since early December. Starting January she is in the county's early intervention program receiving PT 3x a week. We like our new therapist and are seeing some results. Fortunately, 's tilt is very slight and is very good at holding and looking midline. But, when she is in any kind of seat or sleeping she goes to the extreme right. Her roam is excellent but she prefers the right. I guess it's that much easier for her. We try to encourage her to look to the left but sometimes she'll prefer to stare at a blank white wall then to look to her left. She is in daycare full time so unfortunately, I feel we do not give her enough stretches daily. THANKS SO MUCH! Have a great day, Dina and > > Hi everyone, > > My daughter got her StarBand on 1/25/01. At the beginning > all > > seemed to be going smoothly. She adjusted quickly and so did we. > > Butm then, the band started to seem loose and kept rotating some > > what. Anyway, we kept going back for adjustments and then it was > too > > tight. got a nasty blister on her head over her ear and she > > couldn't wear the band for an entire week. My orthotist decided to > > make her a brand new band from her original casting. He said that > > instead of keep adding pading and shaving parts away he wanted to > > start over. He was unaware of how severe to her right she kept her > > head while she slept. is a 10 hour sleeper and literally > keeps > > her right cheeck to the mattress. He said this caused some > shifting > > in the band's foam. I do trust this guy. He's credinatials are > great > > and he seems to treat a lot of babies with bands. > > received her new band on Monday. So far, ok. She had lots > of > > trouble sleeping last night but hopefully that will pass. It also > > seems a little loose but he said as long as it doesn't cover her > eyes > > it's fine. He said her head to hard to fit because of the shape. > > Has anyone had/heard of any similiar experience where they got a > new > > band because it didn't fit right? Now, we have our graduation > > countdown over and the first 3 weeks are a wash out. > > As always, thanks for listening! > > Dina and 7 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Dina, It was probably a real good thing that your ortho was willing to admit that a new band was in order. Some orthos would just insist that everything was ok and try to smooth things over. Hopefully all is set now and you are officially on the road to a rounder head. Best wishes and hang in there! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Dina: I agree...all we ask for is the best for our child. Sometimes that means starting over. All the best with the new band. Sue Luck Cleveland, OH Re: Getting Discouraged > Dina, > > It was probably a real good thing that your ortho was willing to admit that a > new band was in order. Some orthos would just insist that everything was ok > and try to smooth things over. Hopefully all is set now and you are > officially on the road to a rounder head. Best wishes and hang in there! > > Marci (Mom to ) > Oklahoma > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Hi Bernadette, I just want to second everything that has already been said to you. You really should find out WHY they can't/dont' get you in ASAP. Time is of the essence here. Keep us posted. --- In Plagiocephaly , " Bernadette " <billberna@w...> wrote: > I am so busy these days that I barely have time to read this list, much less > post. My dd has had her band now for 12 days. During this time, > we have gone back twice for adjustments, and now we need to go again and > can't get in until Thursday. I am getting discouraged, because every time > she starts wearing it on the continuous schedule (or through the night) she > develops a red spot that doesn't fade. In 12 days, she has only been able > to wear it to bed 3 nights, and now she cannot again until Thursday. So, > she has the helmet, but not really. I am discouraged that she is missing > out on good correction during all these days that she can only wear it > intermittently. I know this orthotist is experienced, but she gets these > stubborn red spots, esp. an inch above the ear on the opposite side of the > opening. My dd is 7-1/2 months old. Any encouragement out there? > > Bernadette, in Orlando Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Hey Bernadette---I feel for you. We went through something similar with our STARBand, as you know. My advice would be to keep the band off of her until you can get these problems solved. Things really went down hill for us when the orthotist seemed to get frustrated with the ongoing red spots and the lack of response to the adjustments. Eventually he advised just wearing the band even though the red spots continued to be a problem. He said something about pink/light red spots being okay and, ultimately, they weren't. This led to a skin breakdown which literally took WEEKS to heal. Continue to take the red spots seriously. I hope you can get it resolved. We felt just sick over our situation because we had no idea what to do next if we got rid of the band. Has he marked the spots on the head with lip stick or something and then put the band on to see if he is shaving the correct spot? CT does this and I highly recommend it. Sometimes, guessing on the spots is just not effective. The other thing I noted is that our head mold did not look like 's head and I felt nervous regarding how the band was fabricated since it was based on this mold. I know this sounds alarming and Orthomerica won't like me saying this on the list...but it is something to consider if it doesn't seem that you can get a good fit. Does the band seem to fit her head? I know that many people have had great experiences with the STARBand...but maybe something has changed in recent months regarding the quality of the fabrication. Just questions for the back of your mind if things don't get better. I wish I would have been more assertive regarding this, myself. Good luck and keep us informed. This same scenario has happened to others on the list and they did eventually get it resolved. I remember (Hannah's mom) having a difficult time with her DOCBand #2 when everything went really smoothly with band #1. Maybe with more tweaking things will improve for you like they did for and Hannah. and B. DOCBand 9/4/03 Miami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Bernadette: How long did you go between casting & fitting of the band? Wasn't it 3 or more wks? That may be contributing to the problem if the band is maybe too tight? Debbie Abby's mom MI > > > I am so busy these days that I barely have time to read this list, > much less > > post. My dd has had her band now for 12 days. During > this time, > > we have gone back twice for adjustments, and now we need to go > again and > > can't get in until Thursday. I am getting discouraged, because > every time > > she starts wearing it on the continuous schedule (or through the > night) she > > develops a red spot that doesn't fade. In 12 days, she has only > been able > > to wear it to bed 3 nights, and now she cannot again until > Thursday. So, > > she has the helmet, but not really. I am discouraged that she is > missing > > out on good correction during all these days that she can only wear > it > > intermittently. I know this orthotist is experienced, but she gets > these > > stubborn red spots, esp. an inch above the ear on the opposite side > of the > > opening. My dd is 7-1/2 months old. Any encouragement out there? > > > > Bernadette, in Orlando Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Bernadtte, I was thinking that too. They might be the whole problem. > > > I am so busy these days that I barely have time to read this > list, > > much less > > > post. My dd has had her band now for 12 days. During > > this time, > > > we have gone back twice for adjustments, and now we need to go > > again and > > > can't get in until Thursday. I am getting discouraged, because > > every time > > > she starts wearing it on the continuous schedule (or through the > > night) she > > > develops a red spot that doesn't fade. In 12 days, she has only > > been able > > > to wear it to bed 3 nights, and now she cannot again until > > Thursday. So, > > > she has the helmet, but not really. I am discouraged that she is > > missing > > > out on good correction during all these days that she can only > wear > > it > > > intermittently. I know this orthotist is experienced, but she > gets > > these > > > stubborn red spots, esp. an inch above the ear on the opposite > side > > of the > > > opening. My dd is 7-1/2 months old. Any encouragement out there? > > > > > > Bernadette, in Orlando Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Well yes, it was 3 weeks. However, the band is still rather loose and can rotate from side to side and from front to back a little bit. Thanks everyone for your comments, and I will call the orthotist office again tomorrow morning and see if there have been any cancellations and say that it is really important to me that we get in as soon as possible. (turns out our orthotist is not in the office tomorrow, but his assistant orthotist might be). Bernadette > Bernadette: > How long did you go between casting & fitting of the band? Wasn't it > 3 or more wks? That may be contributing to the problem if the band > is maybe too tight? > Debbie Abby's mom > MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Thanks, . I think he worked a bit too quickly, and didn't shave high enough about the ear. The spot is a good inch above the ear, but I think he shaved lower than that. I will be persistent and speak up more. Thanks again. Bernadette Quote Link to comment Share on other sites More sharing options...
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