Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Hi, I am so sorry that the medical community let you down when you made every effort to help her, even helmeting her at 2 years of age to glean every possible result. We do have a few members here, currently repo'ing or banding babies, who have older children with untreated plagiocephaly. I hope they will see your post and respond about their experience. We also have members whose babies had severe plagio, and were corrected to mild- moderate, approx. your daughter's current severity, through repositioning or banding. I hope they post to your search for support! We treated our daughter Remy's plagio with aggressive repositioning only. Although we got great results, Remy's head is not perfect by any means. She still has a small area of remaining flatness on the back, right side of her head, and she has slight bulges over both ears. In Remy's case, her hair hides both remaining problems well. There is another support group at for parents of babies over age 2 with untreated plagiocephaly, if you would be interested in joining. Here is the link to the group: OlderPlag/ Take care, Christie (Mom to Repo'd Remy) --- In Plagiocephaly , " frogsleap3 " <frogsleap3@y...> wrote: > My daughter, despite the fact that we began taking her to > specialists at 8 months of age [a neurosurgeon, several > pediatricians], was not correctly diagnosed with plagiocephaly. We > were told over and over that " it would straighten itself out... " It > was not until she was 2 years old that I discovered plagio online. > We went ahead and did the helmeting therapy despite the lack of hope > regarding results, and they were right-it didn't make any > difference. She has right-sided flatness with mild-moderate > [noticable to me!!] bulging on the left side of her head. She is > now almost 4, and is an absoutely beautful, bright child. However, > I worry constantly about her future, self-esteem and confidence, and > can't seem to get beyond my guilt for not having discovered this in > time...is there anyone out there with a similar experience? I'd > love to talk. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Hi and welcome to the group! I see Christie has given you the link to the older plagio support group. I truly hope your able to come to terms with this. Good Luck!! Dustie --- In Plagiocephaly , " frogsleap3 " <frogsleap3@y...> wrote: > My daughter, despite the fact that we began taking her to > specialists at 8 months of age [a neurosurgeon, several > pediatricians], was not correctly diagnosed with plagiocephaly. We > were told over and over that " it would straighten itself out... " It > was not until she was 2 years old that I discovered plagio online. > We went ahead and did the helmeting therapy despite the lack of hope > regarding results, and they were right-it didn't make any > difference. She has right-sided flatness with mild-moderate > [noticable to me!!] bulging on the left side of her head. She is > now almost 4, and is an absoutely beautful, bright child. However, > I worry constantly about her future, self-esteem and confidence, and > can't seem to get beyond my guilt for not having discovered this in > time...is there anyone out there with a similar experience? I'd > love to talk. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Not to be ignorant - I am new to all this - what did agressive repositioning entail? Thank you for your patience.redlocks2003 <redlocks@...> wrote: Hi,I am so sorry that the medical community let you down when you made every effort to help her, even helmeting her at 2 years of age to glean every possible result. We do have a few members here, currently repo'ing or banding babies, who have older children with untreated plagiocephaly. I hope they will see your post and respond about their experience. We also have members whose babies had severe plagio, and were corrected to mild-moderate, approx. your daughter's current severity, through repositioning or banding. I hope they post to your search for support!We treated our daughter Remy's plagio with aggressive repositioning only. Although we got great results, Remy's head is not perfect by any means. She still has a small area of remaining flatness on the back, right side of her head, and she has slight bulges over both ears. In Remy's case, her hair hides both remaining problems well.There is another support group at for parents of babies over age 2 with untreated plagiocephaly, if you would be interested in joining. Here is the link to the group:OlderPlag/Take care,Christie (Mom to Repo'd Remy)> My daughter, despite the fact that we began taking her to > specialists at 8 months of age [a neurosurgeon, several > pediatricians], was not correctly diagnosed with plagiocephaly. We > were told over and over that "it would straighten itself out..." It > was not until she was 2 years old that I discovered plagio online. > We went ahead and did the helmeting therapy despite the lack of hope > regarding results, and they were right-it didn't make any > difference. She has right-sided flatness with mild-moderate > [noticable to me!!] bulging on the left side of her head. She is > now almost 4, and is an absoutely beautful, bright child. However, > I worry constantly about her future, self-esteem and confidence, and > can't seem to get beyond my guilt for not having discovered this in > time...is there anyone out there with a similar experience? I'd > love to talk. Thank you.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Hi, Welcome to the group. I'm sorry to hear of yet another parent who was let down by the medical community. There is another group for parents just like you. All of them have an older child with plagio. You should check it out: OlderPlag/ --- In Plagiocephaly , " frogsleap3 " <frogsleap3@y...> wrote: > My daughter, despite the fact that we began taking her to > specialists at 8 months of age [a neurosurgeon, several > pediatricians], was not correctly diagnosed with plagiocephaly. We > were told over and over that " it would straighten itself out... " It > was not until she was 2 years old that I discovered plagio online. > We went ahead and did the helmeting therapy despite the lack of hope > regarding results, and they were right-it didn't make any > difference. She has right-sided flatness with mild-moderate > [noticable to me!!] bulging on the left side of her head. She is > now almost 4, and is an absoutely beautful, bright child. However, > I worry constantly about her future, self-esteem and confidence, and > can't seem to get beyond my guilt for not having discovered this in > time...is there anyone out there with a similar experience? I'd > love to talk. Thank you. Quote Link to comment Share on other sites More sharing options...
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