Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Hi Everyone- It has been so long since I've posted!! Ian has been in his band for 14 weeks now. I've been sorta getting the run around from Straight Ahead in Cleveland. About a month ago the PT said Ian only needed one more adjustment. We are still going, so that wasn't the case. Two weeks ago she measured Ians head and said he is doing great and insurance would probably consider a second band to be " cosmetic " . His head is as wide as it is long now. However, his cephalic index before banding was at 108% and is now 100%, which it should be in the 80 percentile. Now, yesterday when we went she asked " so do you think you want to go with a second band? " I asked if she thought insurance would cover it and she said " they might consider it continuation of treatment since they covered the first band " Hello- 2 weeks ago I asked if it would be considered continuation of treatment and she said it would be considered cosmetic!! I am so torn- I think Ian's head is still pretty wide, but the flat spot has rounded out nicely! She said I could get another script from the doc and another letter of medical necessity to see if insurance will cover a second band. Can I just reprint the same letter of medical necessity letter that I used the first time around since I wrote it out for the doc because he had no clue what plagio was? Or do I need to rewrite a new one??? I really think Ian needs another band, but my husband doesn't. I'm afraid if we don't get another one his head won't round out and will get wider!! I know you guys will give me great advise! Thanks so much; martz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 , It's great to see and update post from you about Ian. Congratulations on your tremendous cephalic index improvement, as well as his rounding overall! The second band question is such a personal one - I can totally understand why it might also be a difficult one. Would you refresh my memory about how old Ian is now? Although regression does occur, I hear it is very rare, especially if the baby is of an age where he's moving about really well at graduation. I empathize with your brachy concern as well. Remy, our daughter that we repositioned, went from a cephalic index of 1.00 to .94 to .86 from 5 to 11 to 18 months of age.... the index change reflected a super improvement in the aesthetics of her headshape which was a brachy/plagio combo (these ratios were home-measured from our progress photos while repo'ing.) Although once a brachy width is established, you can't band to make the head thinner, you can certainly band to hold the sides of the head in place while redirecting growth outward toward the back of the head. Depending on his age and potential for some more growth spurts, maybe you could decide on a second band for Ian, with the goal of improving that cephalic index even more! Perhaps you could work the angle of number of standard deviations off of normal that the cephalic index is, to reinforce the insurance company's coverage through " continuation of treatment. " Since we didn't deal with insurance, I'm not a really big help in that department, sorry! Would you let us know how your decision process is coming along? Take care, Christie (Mom to Repo'd Remy) > Hi Everyone- > It has been so long since I've posted!! Ian has been in his band for > 14 weeks now. I've been sorta getting the run around from Straight > Ahead in Cleveland. About a month ago the PT said Ian only needed one > more adjustment. We are still going, so that wasn't the case. Two > weeks ago she measured Ians head and said he is doing great and > insurance would probably consider a second band to be " cosmetic " . His > head is as wide as it is long now. However, his cephalic index before > banding was at 108% and is now 100%, which it should be in the 80 > percentile. > Now, yesterday when we went she asked " so do you think you want to go > with a second band? " I asked if she thought insurance would cover it > and she said " they might consider it continuation of treatment since > they covered the first band " Hello- 2 weeks ago I asked if it would > be considered continuation of treatment and she said it would be > considered cosmetic!! > I am so torn- I think Ian's head is still pretty wide, but the flat > spot has rounded out nicely! She said I could get another script from > the doc and another letter of medical necessity to see if insurance > will cover a second band. Can I just reprint the same letter of > medical necessity letter that I used the first time around since I > wrote it out for the doc because he had no clue what plagio was? Or > do I need to rewrite a new one??? > I really think Ian needs another band, but my husband doesn't. I'm > afraid if we don't get another one his head won't round out and will > get wider!! I know you guys will give me great advise! Thanks so much; > martz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Hi , Nice to hear from you! Getting an additional band is a very difficult decision! The way I think you need to look at is thinking about whether or not you would be happy with his head shape the way it is right now. For babies that still have some rounding left to do at graduation, all you can do is hope they will round out some on their own. However, you can't know for sure, so you have to be comfortable with taking that risk. If you are still bothered by his headshape, I'd say go for the band while you still have that window of opportunity. How old is Ian now? Often second bands are covered under a continuation of treatment if the first one is. I'm really not sure if you'd need a different letter of med necessity, but maybe if so just some slight changes and creative rewording would do the trick. Good luck with your decision and please keep us updated! , mom to Hannah, DOC #3 3/30 Cape Cod, Ma > Hi Everyone- > It has been so long since I've posted!! Ian has been in his band for > 14 weeks now. I've been sorta getting the run around from Straight > Ahead in Cleveland. About a month ago the PT said Ian only needed one > more adjustment. We are still going, so that wasn't the case. Two > weeks ago she measured Ians head and said he is doing great and > insurance would probably consider a second band to be " cosmetic " . His > head is as wide as it is long now. However, his cephalic index before > banding was at 108% and is now 100%, which it should be in the 80 > percentile. > Now, yesterday when we went she asked " so do you think you want to go > with a second band? " I asked if she thought insurance would cover it > and she said " they might consider it continuation of treatment since > they covered the first band " Hello- 2 weeks ago I asked if it would > be considered continuation of treatment and she said it would be > considered cosmetic!! > I am so torn- I think Ian's head is still pretty wide, but the flat > spot has rounded out nicely! She said I could get another script from > the doc and another letter of medical necessity to see if insurance > will cover a second band. Can I just reprint the same letter of > medical necessity letter that I used the first time around since I > wrote it out for the doc because he had no clue what plagio was? Or > do I need to rewrite a new one??? > I really think Ian needs another band, but my husband doesn't. I'm > afraid if we don't get another one his head won't round out and will > get wider!! I know you guys will give me great advise! Thanks so much; > martz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 I agree with everything others have said. If you think Ian would benefit from another band then he probably would, and you should go ahead with it while there's still an opportunity. Ian would only benefit from it and if you can get insurance to cover it there is zero downside. The idea of using the cephalic index number to justify a second band is exactly right. I think in one of the folders on this site there is a form from Aetna that uses cephalic index of more than +2 standard deviations to warrant coverage for a band/helmet, so Ian would qualify. I mean, you may not have Aetna but it's good to know what one company is using as their basis for coverage to help you deal with your own insurance. Good luck to you, it sounds like Ian is responding great to treatment so keep on rounding! Matt --- In Plagiocephaly , " " <sarahhollis@y...> wrote: > Hi , > Nice to hear from you! Getting an additional band is a very > difficult decision! The way I think you need to look at is thinking > about whether or not you would be happy with his head shape the way > it is right now. For babies that still have some rounding left to > do at graduation, all you can do is hope they will round out some on > their own. However, you can't know for sure, so you have to be > comfortable with taking that risk. If you are still bothered by his > headshape, I'd say go for the band while you still have that window > of opportunity. How old is Ian now? Often second bands are covered > under a continuation of treatment if the first one is. I'm really > not sure if you'd need a different letter of med necessity, but > maybe if so just some slight changes and creative rewording would do > the trick. Good luck with your decision and please keep us updated! > , mom to Hannah, DOC #3 3/30 > Cape Cod, Ma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Debbie, I'm sorry, but yes, I do think you're being foolish. It took me 3 different doctor to get my daughter's tort diagnosed. I then took her to 2 different ped neurosurgeons, the first one told me my dd's head was perfect and that all babies today have flat heads. The second one told me yes, my dd does have plagio but not enough to warrant a band. I KNEW in my heart she needed to be banded. I took her into Cranial Tech for a free evaluation, they took pictures, wrote a report and overnighted it to my ped. They highly recommended her being banded. As soon as my ped saw the pics and read the report, she wrote me a script. It's so sad but most ped neuros don't know jack about plagio. It's not really their field, surgery is. I think that's why so many of them don't recommend banding. They're just not educated about plagio. I think if the ortho told you, your baby would benefit from a DOCband, then you should band. They are the very best in the business. They are highly trained and I think know more about plagio then anybody. JMO Take care, > Well, I'm sure you have all read about CT recommending a band for > Brielle. Such a hard decision when the chief neurosurgeon from St. > s Hospital and a cranial facial specialist/neurosurgeon at > Children's Hospital of Philadelphia both feel she does not need a > band. The dr. from CHOP is calling me today to discuss this. We are > seeing great results in PT (she is rolling, tolerating more tummy and > has such great movement to the right side) and with the cranialsacral > therapy. We are working hard with repositioning and have only been > doing it since May 1st. I feel like progress has been made. We are at > the moment, going to hold off on the band and repo. for a few more > weeks. We will travel to CT when she is 6 mos, revisit the specialists > and go from there. This was such a hard decision to make. Do you > think I am being foolish? I know the results you all have had from > your bands. Your input has helped so much. Her pictures from May 1st > and May 15th are under Brielle B, I think there has been progress what > do you think? I'm scared to do the wrong thing. Thank you, Debbie > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi . Thanks for your response. I'm sorry that the ped neurosurgeons that you came into contact were not helpful, but I feel that the 2 that I saw were helpful and knowledgeable. The first one, was recommended to me from this site and wrote a script for a band as soon as he met another child. The cranialfacial specialist/neurosurgeon called me today and spoke with me for 45mins. She said that she is all for the bands/helmets, but felt that it was not warranted at this time for Brielle. She felt that lets look at Brielle in 5-6 weeks and go from there. She felt that Brielle was mild not moderate. I trust her and so does my husband. By the way, you said if the orth recommended it, are you referring to at CT, her background is occupational therapy, noone else there looked at Brielle, so I am to base banding her on her opinion when 3 doctors told me to wait and continue what we are doing. I know this is a tough decision. But, I need to wait awhile and see. Sorry. Debbie and Brielle We are doing great with repo., pt and cranialsacral therapy. --- In Plagiocephaly , " stripes6060 " <taime@o...> wrote: > Hi Debbie, > I'm sorry, but yes, I do think you're being foolish. It took me 3 > different doctor to get my daughter's tort diagnosed. I then took her > to 2 different ped neurosurgeons, the first one told me my dd's head > was perfect and that all babies today have flat heads. The second one > told me yes, my dd does have plagio but not enough to warrant a band. > I KNEW in my heart she needed to be banded. I took her into Cranial > Tech for a free evaluation, they took pictures, wrote a report and > overnighted it to my ped. They highly recommended her being banded. > As soon as my ped saw the pics and read the report, she wrote me a > script. It's so sad but most ped neuros don't know jack about plagio. > It's not really their field, surgery is. I think that's why so many > of them don't recommend banding. They're just not educated about > plagio. I think if the ortho told you, your baby would benefit from a > DOCband, then you should band. They are the very best in the > business. They are highly trained and I think know more about plagio > then anybody. JMO > Take care, > > > > Well, I'm sure you have all read about CT recommending a band for > > Brielle. Such a hard decision when the chief neurosurgeon from St. > > s Hospital and a cranial facial specialist/neurosurgeon > at > > Children's Hospital of Philadelphia both feel she does not need a > > band. The dr. from CHOP is calling me today to discuss this. We > are > > seeing great results in PT (she is rolling, tolerating more tummy > and > > has such great movement to the right side) and with the > cranialsacral > > therapy. We are working hard with repositioning and have only been > > doing it since May 1st. I feel like progress has been made. We > are at > > the moment, going to hold off on the band and repo. for a few more > > weeks. We will travel to CT when she is 6 mos, revisit the > specialists > > and go from there. This was such a hard decision to make. Do you > > think I am being foolish? I know the results you all have had from > > your bands. Your input has helped so much. Her pictures from May > 1st > > and May 15th are under Brielle B, I think there has been progress > what > > do you think? I'm scared to do the wrong thing. Thank you, > Debbie > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi . Thanks for your response. I'm sorry that the ped neurosurgeons that you came into contact were not helpful, but I feel that the 2 that I saw were helpful and knowledgeable. The first one, was recommended to me from this site and wrote a script for a band as soon as he met another child. The cranialfacial specialist/neurosurgeon called me today and spoke with me for 45mins. She said that she is all for the bands/helmets, but felt that it was not warranted at this time for Brielle. She felt that lets look at Brielle in 5-6 weeks and go from there. She felt that Brielle was mild not moderate. I trust her and so does my husband. By the way, you said if the orth recommended it, are you referring to at CT, her background is occupational therapy, noone else there looked at Brielle, so I am to base banding her on her opinion when 3 doctors told me to wait and continue what we are doing. I know this is a tough decision. But, I need to wait awhile and see. Sorry. Debbie and Brielle We are doing great with repo., pt and cranialsacral therapy. --- In Plagiocephaly , " stripes6060 " <taime@o...> wrote: > Hi Debbie, > I'm sorry, but yes, I do think you're being foolish. It took me 3 > different doctor to get my daughter's tort diagnosed. I then took her > to 2 different ped neurosurgeons, the first one told me my dd's head > was perfect and that all babies today have flat heads. The second one > told me yes, my dd does have plagio but not enough to warrant a band. > I KNEW in my heart she needed to be banded. I took her into Cranial > Tech for a free evaluation, they took pictures, wrote a report and > overnighted it to my ped. They highly recommended her being banded. > As soon as my ped saw the pics and read the report, she wrote me a > script. It's so sad but most ped neuros don't know jack about plagio. > It's not really their field, surgery is. I think that's why so many > of them don't recommend banding. They're just not educated about > plagio. I think if the ortho told you, your baby would benefit from a > DOCband, then you should band. They are the very best in the > business. They are highly trained and I think know more about plagio > then anybody. JMO > Take care, > > > > Well, I'm sure you have all read about CT recommending a band for > > Brielle. Such a hard decision when the chief neurosurgeon from St. > > s Hospital and a cranial facial specialist/neurosurgeon > at > > Children's Hospital of Philadelphia both feel she does not need a > > band. The dr. from CHOP is calling me today to discuss this. We > are > > seeing great results in PT (she is rolling, tolerating more tummy > and > > has such great movement to the right side) and with the > cranialsacral > > therapy. We are working hard with repositioning and have only been > > doing it since May 1st. I feel like progress has been made. We > are at > > the moment, going to hold off on the band and repo. for a few more > > weeks. We will travel to CT when she is 6 mos, revisit the > specialists > > and go from there. This was such a hard decision to make. Do you > > think I am being foolish? I know the results you all have had from > > your bands. Your input has helped so much. Her pictures from May > 1st > > and May 15th are under Brielle B, I think there has been progress > what > > do you think? I'm scared to do the wrong thing. Thank you, > Debbie > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Debbie, If you truly feel you're seeing repo progress than I don't think you're being foolish. Her head appears to be mild, but I think it's the facial stuff that put her into the moderate category w/your ortho. She's young enough though that you do have time to put another month or so into repo and have her reevaluated at CT then. If you have the 24/7 availability and are willing to take on that level of committment to avoid a helmet then you do have time. I would go forward with getting all the insurance stuff in order though so if you decide in another month to do it than all you have to do is get her casted then, rather than wait even longer. You do have some risk at waiting longer though--if she does end up needing a band still, she may need it for longer and might not see quite as good correction. She'll still be very much young enough for you to see results with it though. Best of luck to you w/the repo. I do agree w/ in that Neurosurgeon's are more in it for brain function and often don't suggest the band except for extreme cases, and craniofacial docs have a plastic surgery backgroud so they are usually a bit less conservative. The ortho's at CT though know best what the bands will and will not fix and how much correction you'll get. They're recommending it b/c they confidently believe it will help her--the doctors are not recommending it b/c they don't believe she NEEDS it. Do you know what I mean? , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com > Well, I'm sure you have all read about CT recommending a band for > Brielle. Such a hard decision when the chief neurosurgeon from St. > s Hospital and a cranial facial specialist/neurosurgeon at > Children's Hospital of Philadelphia both feel she does not need a > band. The dr. from CHOP is calling me today to discuss this. We are > seeing great results in PT (she is rolling, tolerating more tummy and > has such great movement to the right side) and with the cranialsacral > therapy. We are working hard with repositioning and have only been > doing it since May 1st. I feel like progress has been made. We are at > the moment, going to hold off on the band and repo. for a few more > weeks. We will travel to CT when she is 6 mos, revisit the specialists > and go from there. This was such a hard decision to make. Do you > think I am being foolish? I know the results you all have had from > your bands. Your input has helped so much. Her pictures from May 1st > and May 15th are under Brielle B, I think there has been progress what > do you think? I'm scared to do the wrong thing. Thank you, Debbie > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Debbie, If you truly feel you're seeing repo progress than I don't think you're being foolish. Her head appears to be mild, but I think it's the facial stuff that put her into the moderate category w/your ortho. She's young enough though that you do have time to put another month or so into repo and have her reevaluated at CT then. If you have the 24/7 availability and are willing to take on that level of committment to avoid a helmet then you do have time. I would go forward with getting all the insurance stuff in order though so if you decide in another month to do it than all you have to do is get her casted then, rather than wait even longer. You do have some risk at waiting longer though--if she does end up needing a band still, she may need it for longer and might not see quite as good correction. She'll still be very much young enough for you to see results with it though. Best of luck to you w/the repo. I do agree w/ in that Neurosurgeon's are more in it for brain function and often don't suggest the band except for extreme cases, and craniofacial docs have a plastic surgery backgroud so they are usually a bit less conservative. The ortho's at CT though know best what the bands will and will not fix and how much correction you'll get. They're recommending it b/c they confidently believe it will help her--the doctors are not recommending it b/c they don't believe she NEEDS it. Do you know what I mean? , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com > Well, I'm sure you have all read about CT recommending a band for > Brielle. Such a hard decision when the chief neurosurgeon from St. > s Hospital and a cranial facial specialist/neurosurgeon at > Children's Hospital of Philadelphia both feel she does not need a > band. The dr. from CHOP is calling me today to discuss this. We are > seeing great results in PT (she is rolling, tolerating more tummy and > has such great movement to the right side) and with the cranialsacral > therapy. We are working hard with repositioning and have only been > doing it since May 1st. I feel like progress has been made. We are at > the moment, going to hold off on the band and repo. for a few more > weeks. We will travel to CT when she is 6 mos, revisit the specialists > and go from there. This was such a hard decision to make. Do you > think I am being foolish? I know the results you all have had from > your bands. Your input has helped so much. Her pictures from May 1st > and May 15th are under Brielle B, I think there has been progress what > do you think? I'm scared to do the wrong thing. Thank you, Debbie > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hey , I absolutly see what you mean. I do think they put her at moderate because of the ears and if I have to band her in a month I will. Thanks for the info. about getting insurance going, great advice! We are going to work so hard at repo. I'm lucky that I'm home with her, so I can, its really tough though. I'll keep you posted. Thanks so much, Debbie and Brielle (tort/plagio) .. > > Well, I'm sure you have all read about CT recommending a band for > > Brielle. Such a hard decision when the chief neurosurgeon from > St. > > s Hospital and a cranial facial specialist/neurosurgeon > at > > Children's Hospital of Philadelphia both feel she does not need a > > band. The dr. from CHOP is calling me today to discuss this. We > are > > seeing great results in PT (she is rolling, tolerating more tummy > and > > has such great movement to the right side) and with the > cranialsacral > > therapy. We are working hard with repositioning and have only > been > > doing it since May 1st. I feel like progress has been made. We > are at > > the moment, going to hold off on the band and repo. for a few more > > weeks. We will travel to CT when she is 6 mos, revisit the > specialists > > and go from there. This was such a hard decision to make. Do you > > think I am being foolish? I know the results you all have had > from > > your bands. Your input has helped so much. Her pictures from May > 1st > > and May 15th are under Brielle B, I think there has been progress > what > > do you think? I'm scared to do the wrong thing. Thank you, > Debbie > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hey , I absolutly see what you mean. I do think they put her at moderate because of the ears and if I have to band her in a month I will. Thanks for the info. about getting insurance going, great advice! We are going to work so hard at repo. I'm lucky that I'm home with her, so I can, its really tough though. I'll keep you posted. Thanks so much, Debbie and Brielle (tort/plagio) .. > > Well, I'm sure you have all read about CT recommending a band for > > Brielle. Such a hard decision when the chief neurosurgeon from > St. > > s Hospital and a cranial facial specialist/neurosurgeon > at > > Children's Hospital of Philadelphia both feel she does not need a > > band. The dr. from CHOP is calling me today to discuss this. We > are > > seeing great results in PT (she is rolling, tolerating more tummy > and > > has such great movement to the right side) and with the > cranialsacral > > therapy. We are working hard with repositioning and have only > been > > doing it since May 1st. I feel like progress has been made. We > are at > > the moment, going to hold off on the band and repo. for a few more > > weeks. We will travel to CT when she is 6 mos, revisit the > specialists > > and go from there. This was such a hard decision to make. Do you > > think I am being foolish? I know the results you all have had > from > > your bands. Your input has helped so much. Her pictures from May > 1st > > and May 15th are under Brielle B, I think there has been progress > what > > do you think? I'm scared to do the wrong thing. Thank you, > Debbie > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Debbie, I think you have a good solid plan. If at 6 months you are still unhappy with her head shape an go with a band she will still be young enough for good correction. Don't beat yourself up too much worrying about it - you nee you energy for repo and pt mom to na DOC Grad www.thefilyaws.comDeborah B <aguinesslover@...> wrote: Well, I'm sure you have all read about CT recommending a band for Brielle. Such a hard decision when the chief neurosurgeon from St. s Hospital and a cranial facial specialist/neurosurgeon at Children's Hospital of Philadelphia both feel she does not need a band. The dr. from CHOP is calling me today to discuss this. We are seeing great results in PT (she is rolling, tolerating more tummy and has such great movement to the right side) and with the cranialsacral therapy. We are working hard with repositioning and have only been doing it since May 1st. I feel like progress has been made. We are at the moment, going to hold off on the band and repo. for a few more weeks. We will travel to CT when she is 6 mos, revisit the specialists and go from there. This was such a hard decision to make. Do you think I am being foolish? I know the results you all have had from your bands. Your input has helped so much. Her pictures from May 1st and May 15th are under Brielle B, I think there has been progress what do you think? I'm scared to do the wrong thing. Thank you, Debbie and Brielle (tort/plagio 4 1/2/ months) For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Debbie, I think you have a good solid plan. If at 6 months you are still unhappy with her head shape an go with a band she will still be young enough for good correction. Don't beat yourself up too much worrying about it - you nee you energy for repo and pt mom to na DOC Grad www.thefilyaws.comDeborah B <aguinesslover@...> wrote: Well, I'm sure you have all read about CT recommending a band for Brielle. Such a hard decision when the chief neurosurgeon from St. s Hospital and a cranial facial specialist/neurosurgeon at Children's Hospital of Philadelphia both feel she does not need a band. The dr. from CHOP is calling me today to discuss this. We are seeing great results in PT (she is rolling, tolerating more tummy and has such great movement to the right side) and with the cranialsacral therapy. We are working hard with repositioning and have only been doing it since May 1st. I feel like progress has been made. We are at the moment, going to hold off on the band and repo. for a few more weeks. We will travel to CT when she is 6 mos, revisit the specialists and go from there. This was such a hard decision to make. Do you think I am being foolish? I know the results you all have had from your bands. Your input has helped so much. Her pictures from May 1st and May 15th are under Brielle B, I think there has been progress what do you think? I'm scared to do the wrong thing. Thank you, Debbie and Brielle (tort/plagio 4 1/2/ months) For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Debbie, All orthos what work for Cranial Tech are specically trained in treating babies w/plagio. They go through extensive testing. And are retested, I think it's yearly. What it comes down to is doing what you feel is best for your child, just don't let the window of opportunity pass you by. It's really great that repo is working for you. I hope you'll post some pictures of her progress. Take care, > > > Well, I'm sure you have all read about CT recommending a band for > > > Brielle. Such a hard decision when the chief neurosurgeon from > St. > > > s Hospital and a cranial facial > specialist/neurosurgeon > > at > > > Children's Hospital of Philadelphia both feel she does not need a > > > band. The dr. from CHOP is calling me today to discuss this. We > > are > > > seeing great results in PT (she is rolling, tolerating more tummy > > and > > > has such great movement to the right side) and with the > > cranialsacral > > > therapy. We are working hard with repositioning and have only > been > > > doing it since May 1st. I feel like progress has been made. We > > are at > > > the moment, going to hold off on the band and repo. for a few > more > > > weeks. We will travel to CT when she is 6 mos, revisit the > > specialists > > > and go from there. This was such a hard decision to make. Do > you > > > think I am being foolish? I know the results you all have had > from > > > your bands. Your input has helped so much. Her pictures from > May > > 1st > > > and May 15th are under Brielle B, I think there has been progress > > what > > > do you think? I'm scared to do the wrong thing. Thank you, > > Debbie > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Debbie, All orthos what work for Cranial Tech are specically trained in treating babies w/plagio. They go through extensive testing. And are retested, I think it's yearly. What it comes down to is doing what you feel is best for your child, just don't let the window of opportunity pass you by. It's really great that repo is working for you. I hope you'll post some pictures of her progress. Take care, > > > Well, I'm sure you have all read about CT recommending a band for > > > Brielle. Such a hard decision when the chief neurosurgeon from > St. > > > s Hospital and a cranial facial > specialist/neurosurgeon > > at > > > Children's Hospital of Philadelphia both feel she does not need a > > > band. The dr. from CHOP is calling me today to discuss this. We > > are > > > seeing great results in PT (she is rolling, tolerating more tummy > > and > > > has such great movement to the right side) and with the > > cranialsacral > > > therapy. We are working hard with repositioning and have only > been > > > doing it since May 1st. I feel like progress has been made. We > > are at > > > the moment, going to hold off on the band and repo. for a few > more > > > weeks. We will travel to CT when she is 6 mos, revisit the > > specialists > > > and go from there. This was such a hard decision to make. Do > you > > > think I am being foolish? I know the results you all have had > from > > > your bands. Your input has helped so much. Her pictures from > May > > 1st > > > and May 15th are under Brielle B, I think there has been progress > > what > > > do you think? I'm scared to do the wrong thing. Thank you, > > Debbie > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Thank you MOnica, I needed that your great!!!! I'll keep you posted Debbie and Brielle > > Well, I'm sure you have all read about CT recommending a band for > Brielle. Such a hard decision when the chief neurosurgeon from St. > s Hospital and a cranial facial specialist/neurosurgeon at > Children's Hospital of Philadelphia both feel she does not need a > band. The dr. from CHOP is calling me today to discuss this. We are > seeing great results in PT (she is rolling, tolerating more tummy and > has such great movement to the right side) and with the cranialsacral > therapy. We are working hard with repositioning and have only been > doing it since May 1st. I feel like progress has been made. We are at > the moment, going to hold off on the band and repo. for a few more > weeks. We will travel to CT when she is 6 mos, revisit the specialists > and go from there. This was such a hard decision to make. Do you > think I am being foolish? I know the results you all have had from > your bands. Your input has helped so much. Her pictures from May 1st > and May 15th are under Brielle B, I think there has been progress what > do you think? I'm scared to do the wrong thing. Thank you, Debbie > and Brielle (tort/plagio 4 1/2/ months) > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Thank you MOnica, I needed that your great!!!! I'll keep you posted Debbie and Brielle > > Well, I'm sure you have all read about CT recommending a band for > Brielle. Such a hard decision when the chief neurosurgeon from St. > s Hospital and a cranial facial specialist/neurosurgeon at > Children's Hospital of Philadelphia both feel she does not need a > band. The dr. from CHOP is calling me today to discuss this. We are > seeing great results in PT (she is rolling, tolerating more tummy and > has such great movement to the right side) and with the cranialsacral > therapy. We are working hard with repositioning and have only been > doing it since May 1st. I feel like progress has been made. We are at > the moment, going to hold off on the band and repo. for a few more > weeks. We will travel to CT when she is 6 mos, revisit the specialists > and go from there. This was such a hard decision to make. Do you > think I am being foolish? I know the results you all have had from > your bands. Your input has helped so much. Her pictures from May 1st > and May 15th are under Brielle B, I think there has been progress what > do you think? I'm scared to do the wrong thing. Thank you, Debbie > and Brielle (tort/plagio 4 1/2/ months) > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Thankyou . I'll get the pics up asap. I'm not so good with that camera, so I need my husband. I just don't you all to be disappointed in me. I need you guys! This is the hardest decision that I ever had to make and its not about me, its for the love of my life, so I don't want to mess up. But after alot of tears, prayers and thought, I think we have a good game plan and 6 mos isn't bad and if insurance stuff is done and a dr.'s letter is ready than we just do casting. Thank you for your support.Debbie and Brielle > > > > Well, I'm sure you have all read about CT recommending a band > for > > > > Brielle. Such a hard decision when the chief neurosurgeon from > > St. > > > > s Hospital and a cranial facial > > specialist/neurosurgeon > > > at > > > > Children's Hospital of Philadelphia both feel she does not need > a > > > > band. The dr. from CHOP is calling me today to discuss this. > We > > > are > > > > seeing great results in PT (she is rolling, tolerating more > tummy > > > and > > > > has such great movement to the right side) and with the > > > cranialsacral > > > > therapy. We are working hard with repositioning and have only > > been > > > > doing it since May 1st. I feel like progress has been made. > We > > > are at > > > > the moment, going to hold off on the band and repo. for a few > > more > > > > weeks. We will travel to CT when she is 6 mos, revisit the > > > specialists > > > > and go from there. This was such a hard decision to make. Do > > you > > > > think I am being foolish? I know the results you all have had > > from > > > > your bands. Your input has helped so much. Her pictures from > > May > > > 1st > > > > and May 15th are under Brielle B, I think there has been > progress > > > what > > > > do you think? I'm scared to do the wrong thing. Thank you, > > > Debbie > > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Thankyou . I'll get the pics up asap. I'm not so good with that camera, so I need my husband. I just don't you all to be disappointed in me. I need you guys! This is the hardest decision that I ever had to make and its not about me, its for the love of my life, so I don't want to mess up. But after alot of tears, prayers and thought, I think we have a good game plan and 6 mos isn't bad and if insurance stuff is done and a dr.'s letter is ready than we just do casting. Thank you for your support.Debbie and Brielle > > > > Well, I'm sure you have all read about CT recommending a band > for > > > > Brielle. Such a hard decision when the chief neurosurgeon from > > St. > > > > s Hospital and a cranial facial > > specialist/neurosurgeon > > > at > > > > Children's Hospital of Philadelphia both feel she does not need > a > > > > band. The dr. from CHOP is calling me today to discuss this. > We > > > are > > > > seeing great results in PT (she is rolling, tolerating more > tummy > > > and > > > > has such great movement to the right side) and with the > > > cranialsacral > > > > therapy. We are working hard with repositioning and have only > > been > > > > doing it since May 1st. I feel like progress has been made. > We > > > are at > > > > the moment, going to hold off on the band and repo. for a few > > more > > > > weeks. We will travel to CT when she is 6 mos, revisit the > > > specialists > > > > and go from there. This was such a hard decision to make. Do > > you > > > > think I am being foolish? I know the results you all have had > > from > > > > your bands. Your input has helped so much. Her pictures from > > May > > > 1st > > > > and May 15th are under Brielle B, I think there has been > progress > > > what > > > > do you think? I'm scared to do the wrong thing. Thank you, > > > Debbie > > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Deb, No one here would be disappointed in you! No matter what you decide you have our support, 100%!!! You're doing what you think is best for your child and that's how it should be. I can't wait to see the pics. -- In Plagiocephaly , " Deborah B " <aguinesslover@h...> wrote: > Thankyou . I'll get the pics up asap. I'm not so good with > that camera, so I need my husband. I just don't you all to be > disappointed in me. I need you guys! This is the hardest decision > that I ever had to make and its not about me, its for the love of my > life, so I don't want to mess up. But after alot of tears, prayers > and thought, I think we have a good game plan and 6 mos isn't bad and > if insurance stuff is done and a dr.'s letter is ready than we just > do casting. Thank you for your support.Debbie and Brielle > > > > > > > > Well, I'm sure you have all read about CT recommending a band > > for > > > > > Brielle. Such a hard decision when the chief neurosurgeon > from > > > St. > > > > > s Hospital and a cranial facial > > > specialist/neurosurgeon > > > > at > > > > > Children's Hospital of Philadelphia both feel she does not > need > > a > > > > > band. The dr. from CHOP is calling me today to discuss > this. > > We > > > > are > > > > > seeing great results in PT (she is rolling, tolerating more > > tummy > > > > and > > > > > has such great movement to the right side) and with the > > > > cranialsacral > > > > > therapy. We are working hard with repositioning and have > only > > > been > > > > > doing it since May 1st. I feel like progress has been made. > > We > > > > are at > > > > > the moment, going to hold off on the band and repo. for a few > > > more > > > > > weeks. We will travel to CT when she is 6 mos, revisit the > > > > specialists > > > > > and go from there. This was such a hard decision to make. > Do > > > you > > > > > think I am being foolish? I know the results you all have > had > > > from > > > > > your bands. Your input has helped so much. Her pictures > from > > > May > > > > 1st > > > > > and May 15th are under Brielle B, I think there has been > > progress > > > > what > > > > > do you think? I'm scared to do the wrong thing. Thank you, > > > > Debbie > > > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Deb, No one here would be disappointed in you! No matter what you decide you have our support, 100%!!! You're doing what you think is best for your child and that's how it should be. I can't wait to see the pics. -- In Plagiocephaly , " Deborah B " <aguinesslover@h...> wrote: > Thankyou . I'll get the pics up asap. I'm not so good with > that camera, so I need my husband. I just don't you all to be > disappointed in me. I need you guys! This is the hardest decision > that I ever had to make and its not about me, its for the love of my > life, so I don't want to mess up. But after alot of tears, prayers > and thought, I think we have a good game plan and 6 mos isn't bad and > if insurance stuff is done and a dr.'s letter is ready than we just > do casting. Thank you for your support.Debbie and Brielle > > > > > > > > Well, I'm sure you have all read about CT recommending a band > > for > > > > > Brielle. Such a hard decision when the chief neurosurgeon > from > > > St. > > > > > s Hospital and a cranial facial > > > specialist/neurosurgeon > > > > at > > > > > Children's Hospital of Philadelphia both feel she does not > need > > a > > > > > band. The dr. from CHOP is calling me today to discuss > this. > > We > > > > are > > > > > seeing great results in PT (she is rolling, tolerating more > > tummy > > > > and > > > > > has such great movement to the right side) and with the > > > > cranialsacral > > > > > therapy. We are working hard with repositioning and have > only > > > been > > > > > doing it since May 1st. I feel like progress has been made. > > We > > > > are at > > > > > the moment, going to hold off on the band and repo. for a few > > > more > > > > > weeks. We will travel to CT when she is 6 mos, revisit the > > > > specialists > > > > > and go from there. This was such a hard decision to make. > Do > > > you > > > > > think I am being foolish? I know the results you all have > had > > > from > > > > > your bands. Your input has helped so much. Her pictures > from > > > May > > > > 1st > > > > > and May 15th are under Brielle B, I think there has been > > progress > > > > what > > > > > do you think? I'm scared to do the wrong thing. Thank you, > > > > Debbie > > > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Debbie Usually I encourage banding if the plagio is quite noticeable and the baby is 5/6/7 months as I know from personal experience it can be wonderful, but as you also know, I've looked at Brielle's photos and I really really think that her plagio is mild at best, and quite frankly is hardly noticeable at all. She just has no facial assymetry whatsoever, indeed her little face is one of the most symmetrical I have ever seen in a child and I've looked at lots of photos on here! I think with the great progress you are seeing with repo (every two weeks you have seen improvement over six weeks now) and with two pro-band docs saying why not keep with the repo and then re-evaluate as it really is mild, you are right to take their opinion into account. I think usually CT are very very reliable in their judgements, and would normally encourage parents to go with them, but on this one I have to say I think your judgement is correct. That's my opinion having seen the photos, but as you point out, you have to go with what you feel comfortable with- you certainly don't have to account for yourself to us, you must do what is right for you and Brielle, who by the way is also incredibly cute! Hannah (mum to Lucia, London, UK) Cranio grad > > > > > > Well, I'm sure you have all read about CT recommending a > band > > > for > > > > > > Brielle. Such a hard decision when the chief neurosurgeon > > from > > > > St. > > > > > > s Hospital and a cranial facial > > > > specialist/neurosurgeon > > > > > at > > > > > > Children's Hospital of Philadelphia both feel she does not > > need > > > a > > > > > > band. The dr. from CHOP is calling me today to discuss > > this. > > > We > > > > > are > > > > > > seeing great results in PT (she is rolling, tolerating more > > > tummy > > > > > and > > > > > > has such great movement to the right side) and with the > > > > > cranialsacral > > > > > > therapy. We are working hard with repositioning and have > > only > > > > been > > > > > > doing it since May 1st. I feel like progress has been > made. > > > We > > > > > are at > > > > > > the moment, going to hold off on the band and repo. for a > few > > > > more > > > > > > weeks. We will travel to CT when she is 6 mos, revisit the > > > > > specialists > > > > > > and go from there. This was such a hard decision to make. > > Do > > > > you > > > > > > think I am being foolish? I know the results you all have > > had > > > > from > > > > > > your bands. Your input has helped so much. Her pictures > > from > > > > May > > > > > 1st > > > > > > and May 15th are under Brielle B, I think there has been > > > progress > > > > > what > > > > > > do you think? I'm scared to do the wrong thing. Thank > you, > > > > > Debbie > > > > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Debbie Usually I encourage banding if the plagio is quite noticeable and the baby is 5/6/7 months as I know from personal experience it can be wonderful, but as you also know, I've looked at Brielle's photos and I really really think that her plagio is mild at best, and quite frankly is hardly noticeable at all. She just has no facial assymetry whatsoever, indeed her little face is one of the most symmetrical I have ever seen in a child and I've looked at lots of photos on here! I think with the great progress you are seeing with repo (every two weeks you have seen improvement over six weeks now) and with two pro-band docs saying why not keep with the repo and then re-evaluate as it really is mild, you are right to take their opinion into account. I think usually CT are very very reliable in their judgements, and would normally encourage parents to go with them, but on this one I have to say I think your judgement is correct. That's my opinion having seen the photos, but as you point out, you have to go with what you feel comfortable with- you certainly don't have to account for yourself to us, you must do what is right for you and Brielle, who by the way is also incredibly cute! Hannah (mum to Lucia, London, UK) Cranio grad > > > > > > Well, I'm sure you have all read about CT recommending a > band > > > for > > > > > > Brielle. Such a hard decision when the chief neurosurgeon > > from > > > > St. > > > > > > s Hospital and a cranial facial > > > > specialist/neurosurgeon > > > > > at > > > > > > Children's Hospital of Philadelphia both feel she does not > > need > > > a > > > > > > band. The dr. from CHOP is calling me today to discuss > > this. > > > We > > > > > are > > > > > > seeing great results in PT (she is rolling, tolerating more > > > tummy > > > > > and > > > > > > has such great movement to the right side) and with the > > > > > cranialsacral > > > > > > therapy. We are working hard with repositioning and have > > only > > > > been > > > > > > doing it since May 1st. I feel like progress has been > made. > > > We > > > > > are at > > > > > > the moment, going to hold off on the band and repo. for a > few > > > > more > > > > > > weeks. We will travel to CT when she is 6 mos, revisit the > > > > > specialists > > > > > > and go from there. This was such a hard decision to make. > > Do > > > > you > > > > > > think I am being foolish? I know the results you all have > > had > > > > from > > > > > > your bands. Your input has helped so much. Her pictures > > from > > > > May > > > > > 1st > > > > > > and May 15th are under Brielle B, I think there has been > > > progress > > > > > what > > > > > > do you think? I'm scared to do the wrong thing. Thank > you, > > > > > Debbie > > > > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Thankyou Hannah. I will try to get the pictures up this weekend for you all to look at. Your advice is wonderful, thankyou and I'm glad that you feel she is mild also, thankyou. Debbie and Brielle > > > > > > > Well, I'm sure you have all read about CT recommending a > > band > > > > for > > > > > > > Brielle. Such a hard decision when the chief > neurosurgeon > > > from > > > > > St. > > > > > > > s Hospital and a cranial facial > > > > > specialist/neurosurgeon > > > > > > at > > > > > > > Children's Hospital of Philadelphia both feel she does > not > > > need > > > > a > > > > > > > band. The dr. from CHOP is calling me today to discuss > > > this. > > > > We > > > > > > are > > > > > > > seeing great results in PT (she is rolling, tolerating > more > > > > tummy > > > > > > and > > > > > > > has such great movement to the right side) and with the > > > > > > cranialsacral > > > > > > > therapy. We are working hard with repositioning and > have > > > only > > > > > been > > > > > > > doing it since May 1st. I feel like progress has been > > made. > > > > We > > > > > > are at > > > > > > > the moment, going to hold off on the band and repo. for > a > > few > > > > > more > > > > > > > weeks. We will travel to CT when she is 6 mos, revisit > the > > > > > > specialists > > > > > > > and go from there. This was such a hard decision to > make. > > > Do > > > > > you > > > > > > > think I am being foolish? I know the results you all > have > > > had > > > > > from > > > > > > > your bands. Your input has helped so much. Her > pictures > > > from > > > > > May > > > > > > 1st > > > > > > > and May 15th are under Brielle B, I think there has been > > > > progress > > > > > > what > > > > > > > do you think? I'm scared to do the wrong thing. Thank > > you, > > > > > > Debbie > > > > > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Thankyou Hannah. I will try to get the pictures up this weekend for you all to look at. Your advice is wonderful, thankyou and I'm glad that you feel she is mild also, thankyou. Debbie and Brielle > > > > > > > Well, I'm sure you have all read about CT recommending a > > band > > > > for > > > > > > > Brielle. Such a hard decision when the chief > neurosurgeon > > > from > > > > > St. > > > > > > > s Hospital and a cranial facial > > > > > specialist/neurosurgeon > > > > > > at > > > > > > > Children's Hospital of Philadelphia both feel she does > not > > > need > > > > a > > > > > > > band. The dr. from CHOP is calling me today to discuss > > > this. > > > > We > > > > > > are > > > > > > > seeing great results in PT (she is rolling, tolerating > more > > > > tummy > > > > > > and > > > > > > > has such great movement to the right side) and with the > > > > > > cranialsacral > > > > > > > therapy. We are working hard with repositioning and > have > > > only > > > > > been > > > > > > > doing it since May 1st. I feel like progress has been > > made. > > > > We > > > > > > are at > > > > > > > the moment, going to hold off on the band and repo. for > a > > few > > > > > more > > > > > > > weeks. We will travel to CT when she is 6 mos, revisit > the > > > > > > specialists > > > > > > > and go from there. This was such a hard decision to > make. > > > Do > > > > > you > > > > > > > think I am being foolish? I know the results you all > have > > > had > > > > > from > > > > > > > your bands. Your input has helped so much. Her > pictures > > > from > > > > > May > > > > > > 1st > > > > > > > and May 15th are under Brielle B, I think there has been > > > > progress > > > > > > what > > > > > > > do you think? I'm scared to do the wrong thing. Thank > > you, > > > > > > Debbie > > > > > > > and Brielle (tort/plagio 4 1/2/ months) Quote Link to comment Share on other sites More sharing options...
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