Guest guest Posted April 8, 2000 Report Share Posted April 8, 2000 ....That is a sad fact! There will be so many more children left untreated even now unless these crazy drs change and start being a bit more concerned. There must be some way we can all make a difference in a childs life(besides our own). I will be writting a letter to the head chiefton were my kids were born. Another person I may look up would be my lamaze teacher. Belinda (Indiana) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2000 Report Share Posted April 8, 2000 Hello C , my name is Shane s , and my wife Jill regularly gets the E-mails from the Plagio group. I work in Pediatric Plastic Surgery , and I can't help but notice that the girl in this story seems to have problems unrelated to plagiocephaly , rather , she sounds like she has hemifacial microsomia . If you have a way of contacting them , you may want to advise them to see a Pediatric Plastic Surgeon. Thanks ----- Original Message ----- From: C. Plagiocephaly Sent: Saturday, April 08, 2000 3:43 AM Subject: Too late... Well, it's late and I reaallllyyy need to go to bed. But, I wanted to relay something I saw today that was sad. We went to Oak Brook today for an adjustment. I was 2 hours late (of course-stupid traffic/time change/pick your excuse), so we sat in one of the rooms for a while until it was our turn. Kay was talking with a couple who had a 17 month old little girl. They were there for an evaluation. The back of the little girl's head wasn't noticeably flat (she came in and visited with Grace for a bit), but her facial features were uneven. Not so much that you would stare, not by any measure. But just enough where you would smile at her and think, "what is kind of striking on this child?" One eye was a little higher, one cheek and jaw more prominent. You all are familiar with the features. What was sad was, Kay had to tell the parents their daughter was too old to get much, if any, correction in her facial asymmetry. She kept reassuring the parents that their daughter was beautiful and the unevenness was very mild. She left them to talk about it and came in to see Grace in the meantime. It sounded as though the parents left still mulling over going ahead with the DOC band. The mom was kind of jerkily gathering up the daughter's things, like her joints were stiff, and trying to keep her head facing towards the ceiling. I've done that too, when I don't want the tears to run down my face. I felt so bad. It made me want to go out there and betray the fact I've been eavesdropping, and tell them their daughter really was a beautiful child and the difference of her features would only make her more so! But, at the same time I felt guilty. Reassurances from me would sound hollow. After all, MY daughter would, in a few short months, have the DOC band behind her and her head and face fairly squared away. So, I didn't say anything. But, it was eating at me and I feel so bad for that mom. And I guess I wanted to drag you into it. But, there you go. Now, good night. C./subscribe/Plagiocephaly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2000 Report Share Posted April 8, 2000 Thank you Shane. I will definitely call Kay on Monday. The little girl's ears were normal (if unevenly placed). When a child has hemifacial microsomia, does it always affect the ear? You have started me thinking, though. Now that I'm more awake, it doesn't make sense that Positional Plagio would cause an actual shift in the eye orbits (causing one to actually be higher than the other). If the mother were reading my banal dissection of her daughters features, I would be so ashamed. C./subscribe/Plagiocephaly ----- Original Message ----- From: Shane & Jill Plagiocephalyegroups Sent: Saturday, April 08, 2000 11:44 AM Subject: Re: Too late... Hello C , my name is Shane s , and my wife Jill regularly gets the E-mails from the Plagio group. I work in Pediatric Plastic Surgery , and I can't help but notice that the girl in this story seems to have problems unrelated to plagiocephaly , rather , she sounds like she has hemifacial microsomia . If you have a way of contacting them , you may want to advise them to see a Pediatric Plastic Surgeon. Thanks ----- Original Message ----- From: C. Plagiocephaly Sent: Saturday, April 08, 2000 3:43 AM Subject: Too late... Well, it's late and I reaallllyyy need to go to bed. But, I wanted to relay something I saw today that was sad. We went to Oak Brook today for an adjustment. I was 2 hours late (of course-stupid traffic/time change/pick your excuse), so we sat in one of the rooms for a while until it was our turn. Kay was talking with a couple who had a 17 month old little girl. They were there for an evaluation. The back of the little girl's head wasn't noticeably flat (she came in and visited with Grace for a bit), but her facial features were uneven. Not so much that you would stare, not by any measure. But just enough where you would smile at her and think, "what is kind of striking on this child?" One eye was a little higher, one cheek and jaw more prominent. You all are familiar with the features. What was sad was, Kay had to tell the parents their daughter was too old to get much, if any, correction in her facial asymmetry. She kept reassuring the parents that their daughter was beautiful and the unevenness was very mild. She left them to talk about it and came in to see Grace in the meantime. It sounded as though the parents left still mulling over going ahead with the DOC band. The mom was kind of jerkily gathering up the daughter's things, like her joints were stiff, and trying to keep her head facing towards the ceiling. I've done that too, when I don't want the tears to run down my face. I felt so bad. It made me want to go out there and betray the fact I've been eavesdropping, and tell them their daughter really was a beautiful child and the difference of her features would only make her more so! But, at the same time I felt guilty. Reassurances from me would sound hollow. After all, MY daughter would, in a few short months, have the DOC band behind her and her head and face fairly squared away. So, I didn't say anything. But, it was eating at me and I feel so bad for that mom. And I guess I wanted to drag you into it. But, there you go. Now, good night. C./subscribe/Plagiocephaly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2000 Report Share Posted April 8, 2000 There is a so-called syndrome called Goldenhar's , which includes one-sided facial and ear deformities, but it is not a routine part of hemifacial microsomia. Hemifacial microsomia is manifested by distortions of one side of the face , which MAY cause distortion , or at least when you look at the child , of the appearance of the eye. More importantly , the facial bones ( maxilla , upper jaw / Mandible , lower jaw / and zygoma , cheek bone ) are involved , as well as a malocclusion ( open bite or lack of proper alignment when biting down ) . The ear may or may not be distorted. Ear distortion in the absence of actual microtia ( absent or deformed ear shape) can be part and parcel of the musculoskeletal changes that occur with torticollis and/or deformational plagiocephaly. SHANE ----- Original Message ----- From: C. Plagiocephalyegroups Sent: Saturday, April 08, 2000 1:29 PM Subject: Re: Too late... Thank you Shane. I will definitely call Kay on Monday. The little girl's ears were normal (if unevenly placed). When a child has hemifacial microsomia, does it always affect the ear? You have started me thinking, though. Now that I'm more awake, it doesn't make sense that Positional Plagio would cause an actual shift in the eye orbits (causing one to actually be higher than the other). If the mother were reading my banal dissection of her daughters features, I would be so ashamed. C./subscribe/Plagiocephaly ----- Original Message ----- From: Shane & Jill Plagiocephalyegroups Sent: Saturday, April 08, 2000 11:44 AM Subject: Re: Too late... Hello C , my name is Shane s , and my wife Jill regularly gets the E-mails from the Plagio group. I work in Pediatric Plastic Surgery , and I can't help but notice that the girl in this story seems to have problems unrelated to plagiocephaly , rather , she sounds like she has hemifacial microsomia . If you have a way of contacting them , you may want to advise them to see a Pediatric Plastic Surgeon. Thanks ----- Original Message ----- From: C. Plagiocephaly Sent: Saturday, April 08, 2000 3:43 AM Subject: Too late... Well, it's late and I reaallllyyy need to go to bed. But, I wanted to relay something I saw today that was sad. We went to Oak Brook today for an adjustment. I was 2 hours late (of course-stupid traffic/time change/pick your excuse), so we sat in one of the rooms for a while until it was our turn. Kay was talking with a couple who had a 17 month old little girl. They were there for an evaluation. The back of the little girl's head wasn't noticeably flat (she came in and visited with Grace for a bit), but her facial features were uneven. Not so much that you would stare, not by any measure. But just enough where you would smile at her and think, "what is kind of striking on this child?" One eye was a little higher, one cheek and jaw more prominent. You all are familiar with the features. What was sad was, Kay had to tell the parents their daughter was too old to get much, if any, correction in her facial asymmetry. She kept reassuring the parents that their daughter was beautiful and the unevenness was very mild. She left them to talk about it and came in to see Grace in the meantime. It sounded as though the parents left still mulling over going ahead with the DOC band. The mom was kind of jerkily gathering up the daughter's things, like her joints were stiff, and trying to keep her head facing towards the ceiling. I've done that too, when I don't want the tears to run down my face. I felt so bad. It made me want to go out there and betray the fact I've been eavesdropping, and tell them their daughter really was a beautiful child and the difference of her features would only make her more so! But, at the same time I felt guilty. Reassurances from me would sound hollow. After all, MY daughter would, in a few short months, have the DOC band behind her and her head and face fairly squared away. So, I didn't say anything. But, it was eating at me and I feel so bad for that mom. And I guess I wanted to drag you into it. But, there you go. Now, good night. C./subscribe/Plagiocephaly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2000 Report Share Posted April 9, 2000 Hemifacial microsomia does not necessarily affect the ear, though defects of the ear such as microtia ( absent or SEVERELY deformed outer ear ) are part of what is known as Goldenhars syndrome. Rather than be worried whether your or another's child has hemifacial microsomia , have their facial concerns looked at by their Peds , or if you're concerned about their jaw , have them evaluated by a Pediatric Plastic or Maxillofacial Specialist to rule this out . There are multiple reasons for distortion of the jaw , including soft tissue problems of the cheek , which may make one cheek look more full than the other , thus making it seem to be a smaller jaw. Always bring any concerns up to the child's Peds MD , and if you feel patronized if your concerns are easily dismissed , insist on seeing a Specialist, as only they can affirm or refute a condition as specific as Hemifacial Microsomia. Thanks.....SHANE P.S- I've read shane's posts and I'm afraid that some of his reply's may come across a bit harsh.I've even told him this but he say's I'm being silly.I just want to say that sometimes he may *seem* that way-but he really is not trying to be. He just gets to technical sometimes. ~Jill ...Shanes silly wife ) ----- Original Message ----- From: Diane!!! Plagiocephalyegroups Sent: Saturday, April 08, 2000 11:59 PM Subject: Re: Too late... I'd also like to know if it always affects the ear. My son has torticollis and his jaw appears smaller on one side, as well as eye asymmetry (could look that way because of the innercanthus fold), but his ears are very much in line and not misshapen in any way. thanks, Diane " C." wrote: Thank you Shane. I will definitely call Kay on Monday. The little girl's ears were normal (if unevenly placed). When a child has hemifacial microsomia, does it always affect the ear? You have started me thinking, though. Now that I'm more awake, it doesn't make sense that Positional Plagio would cause an actual shift in the eye orbits (causing one to actually be higher than the other). If the mother were reading my banal dissection of her daughters features, I would be so ashamed. C. /subscribe/Plagiocephaly ----- Original Message ----- From: Shane & Jill Plagiocephalyegroups Sent: Saturday, April 08, 2000 11:44 AM Subject: Re: Too late... Hello C , my name is Shane s , and my wife Jill regularly gets the E-mails from the Plagio group. I work in Pediatric Plastic Surgery , and I can't help but notice that the girl in this story seems to have problems unrelated to plagiocephaly , rather , she sounds like she has hemifacial microsomia . If you have a way of contacting them , you may want to advise them to see a Pediatric Plastic Surgeon. Thanks ----- Original Message ----- From: C. Plagiocephaly Sent: Saturday, April 08, 2000 3:43 AM Subject: Too late... Well, it's late and I reaallllyyy need to go to bed. But, I wanted to relay something I saw today that was sad. We went to Oak Brook today for an adjustment. I was 2 hours late (of course-stupid traffic/time change/pick your excuse), so we sat in one of the rooms for a while until it was our turn. Kay was talking with a couple who had a 17 month old little girl. They were there for an evaluation. The back of the little girl's head wasn't noticeably flat (she came in and visited with Grace for a bit), but her facial features were uneven. Not so much that you would stare, not by any measure. But just enough where you would smile at her and think, "what is kind of striking on this child?" One eye was a little higher, one cheek and jaw more prominent. You all are familiar with the features. What was sad was, Kay had to tell the parents their daughter was too old to get much, if any, correction in her facial asymmetry. She kept reassuring the parents that their daughter was beautiful and the unevenness was very mild. She left them to talk about it and came in to see Grace in the meantime. It sounded as though the parents left still mulling over going ahead with the DOC band. The mom was kind of jerkily gathering up the daughter's things, like her joints were stiff, and trying to keep her head facing towards the ceiling. I've done that too, when I don't want the tears to run down my face. I felt so bad. It made me want to go out there and betray the fact I've been eavesdropping, and tell them their daughter really was a beautiful child and the difference of her features would only make her more so! But, at the same time I felt guilty. Reassurances from me would sound hollow. After all, MY daughter would, in a few short months, have the DOC band behind her and her head and face fairly squared away. So, I didn't say anything. But, it was eating at me and I feel so bad for that mom. And I guess I wanted to drag you into it. But, there you go. Now, good night. C. /subscribe/Plagiocephaly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2000 Report Share Posted April 9, 2000 OH! I understood Goldenhar's Syndrome and hemifacial microsomia to stem from similar problems. A vascular disturbance during fetal development. So, I jumped to the conclusion microtia was a common manifestation. Thank you for the lesson! C./subscribe/Plagiocephaly ----- Original Message ----- From: Shane & Jill Plagiocephalyegroups Sent: Saturday, April 08, 2000 3:26 PM Subject: Re: Too late... There is a so-called syndrome called Goldenhar's , which includes one-sided facial and ear deformities, but it is not a routine part of hemifacial microsomia. Hemifacial microsomia is manifested by distortions of one side of the face , which MAY cause distortion , or at least when you look at the child , of the appearance of the eye. More importantly , the facial bones ( maxilla , upper jaw / Mandible , lower jaw / and zygoma , cheek bone ) are involved , as well as a malocclusion ( open bite or lack of proper alignment when biting down ) . The ear may or may not be distorted. Ear distortion in the absence of actual microtia ( absent or deformed ear shape) can be part and parcel of the musculoskeletal changes that occur with torticollis and/or deformational plagiocephaly. SHANE ----- Original Message ----- From: C. Plagiocephalyegroups Sent: Saturday, April 08, 2000 1:29 PM Subject: Re: Too late... Thank you Shane. I will definitely call Kay on Monday. The little girl's ears were normal (if unevenly placed). When a child has hemifacial microsomia, does it always affect the ear? You have started me thinking, though. Now that I'm more awake, it doesn't make sense that Positional Plagio would cause an actual shift in the eye orbits (causing one to actually be higher than the other). If the mother were reading my banal dissection of her daughters features, I would be so ashamed. C./subscribe/Plagiocephaly ----- Original Message ----- From: Shane & Jill Plagiocephalyegroups Sent: Saturday, April 08, 2000 11:44 AM Subject: Re: Too late... Hello C , my name is Shane s , and my wife Jill regularly gets the E-mails from the Plagio group. I work in Pediatric Plastic Surgery , and I can't help but notice that the girl in this story seems to have problems unrelated to plagiocephaly , rather , she sounds like she has hemifacial microsomia . If you have a way of contacting them , you may want to advise them to see a Pediatric Plastic Surgeon. Thanks ----- Original Message ----- From: C. Plagiocephaly Sent: Saturday, April 08, 2000 3:43 AM Subject: Too late... Well, it's late and I reaallllyyy need to go to bed. But, I wanted to relay something I saw today that was sad. We went to Oak Brook today for an adjustment. I was 2 hours late (of course-stupid traffic/time change/pick your excuse), so we sat in one of the rooms for a while until it was our turn. Kay was talking with a couple who had a 17 month old little girl. They were there for an evaluation. The back of the little girl's head wasn't noticeably flat (she came in and visited with Grace for a bit), but her facial features were uneven. Not so much that you would stare, not by any measure. But just enough where you would smile at her and think, "what is kind of striking on this child?" One eye was a little higher, one cheek and jaw more prominent. You all are familiar with the features. What was sad was, Kay had to tell the parents their daughter was too old to get much, if any, correction in her facial asymmetry. She kept reassuring the parents that their daughter was beautiful and the unevenness was very mild. She left them to talk about it and came in to see Grace in the meantime. It sounded as though the parents left still mulling over going ahead with the DOC band. The mom was kind of jerkily gathering up the daughter's things, like her joints were stiff, and trying to keep her head facing towards the ceiling. I've done that too, when I don't want the tears to run down my face. I felt so bad. It made me want to go out there and betray the fact I've been eavesdropping, and tell them their daughter really was a beautiful child and the difference of her features would only make her more so! But, at the same time I felt guilty. Reassurances from me would sound hollow. After all, MY daughter would, in a few short months, have the DOC band behind her and her head and face fairly squared away. So, I didn't say anything. But, it was eating at me and I feel so bad for that mom. And I guess I wanted to drag you into it. But, there you go. Now, good night. C./subscribe/Plagiocephaly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2000 Report Share Posted April 9, 2000 Silly Jill I, for one, don't have a problem with Shane's delivery of his information. Sometimes a cold, technical look at the information is what is needed. If you get too emotional about some of this, you end up thinking your kid has every syndrome and deformity known to man! Nope, we need to hear the facts. And I'm very happy Shane is willing to give them to us. THANKS! C./subscribe/Plagiocephaly ----- Original Message ----- From: Shane & Jill Plagiocephalyegroups Sent: Saturday, April 08, 2000 9:16 PM Subject: Re: Too late... Hemifacial microsomia does not necessarily affect the ear, though defects of the ear such as microtia ( absent or SEVERELY deformed outer ear ) are part of what is known as Goldenhars syndrome. Rather than be worried whether your or another's child has hemifacial microsomia , have their facial concerns looked at by their Peds , or if you're concerned about their jaw , have them evaluated by a Pediatric Plastic or Maxillofacial Specialist to rule this out . There are multiple reasons for distortion of the jaw , including soft tissue problems of the cheek , which may make one cheek look more full than the other , thus making it seem to be a smaller jaw. Always bring any concerns up to the child's Peds MD , and if you feel patronized if your concerns are easily dismissed , insist on seeing a Specialist, as only they can affirm or refute a condition as specific as Hemifacial Microsomia. Thanks.....SHANE P.S- I've read shane's posts and I'm afraid that some of his reply's may come across a bit harsh.I've even told him this but he say's I'm being silly.I just want to say that sometimes he may *seem* that way-but he really is not trying to be. He just gets to technical sometimes. ~Jill ...Shanes silly wife ) ----- Original Message ----- From: Diane!!! Plagiocephalyegroups Sent: Saturday, April 08, 2000 11:59 PM Subject: Re: Too late... I'd also like to know if it always affects the ear. My son has torticollis and his jaw appears smaller on one side, as well as eye asymmetry (could look that way because of the innercanthus fold), but his ears are very much in line and not misshapen in any way. thanks, Diane " C." wrote: Thank you Shane. I will definitely call Kay on Monday. The little girl's ears were normal (if unevenly placed). When a child has hemifacial microsomia, does it always affect the ear? You have started me thinking, though. Now that I'm more awake, it doesn't make sense that Positional Plagio would cause an actual shift in the eye orbits (causing one to actually be higher than the other). If the mother were reading my banal dissection of her daughters features, I would be so ashamed. C. /subscribe/Plagiocephaly ----- Original Message ----- From: Shane & Jill Plagiocephalyegroups Sent: Saturday, April 08, 2000 11:44 AM Subject: Re: Too late... Hello C , my name is Shane s , and my wife Jill regularly gets the E-mails from the Plagio group. I work in Pediatric Plastic Surgery , and I can't help but notice that the girl in this story seems to have problems unrelated to plagiocephaly , rather , she sounds like she has hemifacial microsomia . If you have a way of contacting them , you may want to advise them to see a Pediatric Plastic Surgeon. Thanks ----- Original Message ----- From: C. Plagiocephaly Sent: Saturday, April 08, 2000 3:43 AM Subject: Too late... Well, it's late and I reaallllyyy need to go to bed. But, I wanted to relay something I saw today that was sad. We went to Oak Brook today for an adjustment. I was 2 hours late (of course-stupid traffic/time change/pick your excuse), so we sat in one of the rooms for a while until it was our turn. Kay was talking with a couple who had a 17 month old little girl. They were there for an evaluation. The back of the little girl's head wasn't noticeably flat (she came in and visited with Grace for a bit), but her facial features were uneven. Not so much that you would stare, not by any measure. But just enough where you would smile at her and think, "what is kind of striking on this child?" One eye was a little higher, one cheek and jaw more prominent. You all are familiar with the features. What was sad was, Kay had to tell the parents their daughter was too old to get much, if any, correction in her facial asymmetry. She kept reassuring the parents that their daughter was beautiful and the unevenness was very mild. She left them to talk about it and came in to see Grace in the meantime. It sounded as though the parents left still mulling over going ahead with the DOC band. The mom was kind of jerkily gathering up the daughter's things, like her joints were stiff, and trying to keep her head facing towards the ceiling. I've done that too, when I don't want the tears to run down my face. I felt so bad. It made me want to go out there and betray the fact I've been eavesdropping, and tell them their daughter really was a beautiful child and the difference of her features would only make her more so! But, at the same time I felt guilty. Reassurances from me would sound hollow. After all, MY daughter would, in a few short months, have the DOC band behind her and her head and face fairly squared away. So, I didn't say anything. But, it was eating at me and I feel so bad for that mom. And I guess I wanted to drag you into it. But, there you go. Now, good night. C. /subscribe/Plagiocephaly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2000 Report Share Posted April 9, 2000 I'd also like to know if it always affects the ear. My son has torticollis and his jaw appears smaller on one side, as well as eye asymmetry (could look that way because of the innercanthus fold), but his ears are very much in line and not misshapen in any way. thanks, Diane " C." wrote: Thank you Shane. I will definitely call Kay on Monday. The little girl's ears were normal (if unevenly placed). When a child has hemifacial microsomia, does it always affect the ear? You have started me thinking, though. Now that I'm more awake, it doesn't make sense that Positional Plagio would cause an actual shift in the eye orbits (causing one to actually be higher than the other). If the mother were reading my banal dissection of her daughters features, I would be so ashamed. C. /subscribe/Plagiocephaly ----- Original Message ----- From: Shane & Jill Plagiocephalyegroups Sent: Saturday, April 08, 2000 11:44 AM Subject: Re: Too late... Hello C , my name is Shane s , and my wife Jill regularly gets the E-mails from the Plagio group. I work in Pediatric Plastic Surgery , and I can't help but notice that the girl in this story seems to have problems unrelated to plagiocephaly , rather , she sounds like she has hemifacial microsomia . If you have a way of contacting them , you may want to advise them to see a Pediatric Plastic Surgeon. Thanks ----- Original Message ----- From: C. Plagiocephaly Sent: Saturday, April 08, 2000 3:43 AM Subject: Too late... Well, it's late and I reaallllyyy need to go to bed. But, I wanted to relay something I saw today that was sad. We went to Oak Brook today for an adjustment. I was 2 hours late (of course-stupid traffic/time change/pick your excuse), so we sat in one of the rooms for a while until it was our turn. Kay was talking with a couple who had a 17 month old little girl. They were there for an evaluation. The back of the little girl's head wasn't noticeably flat (she came in and visited with Grace for a bit), but her facial features were uneven. Not so much that you would stare, not by any measure. But just enough where you would smile at her and think, "what is kind of striking on this child?" One eye was a little higher, one cheek and jaw more prominent. You all are familiar with the features. What was sad was, Kay had to tell the parents their daughter was too old to get much, if any, correction in her facial asymmetry. She kept reassuring the parents that their daughter was beautiful and the unevenness was very mild. She left them to talk about it and came in to see Grace in the meantime. It sounded as though the parents left still mulling over going ahead with the DOC band. The mom was kind of jerkily gathering up the daughter's things, like her joints were stiff, and trying to keep her head facing towards the ceiling. I've done that too, when I don't want the tears to run down my face. I felt so bad. It made me want to go out there and betray the fact I've been eavesdropping, and tell them their daughter really was a beautiful child and the difference of her features would only make her more so! But, at the same time I felt guilty. Reassurances from me would sound hollow. After all, MY daughter would, in a few short months, have the DOC band behind her and her head and face fairly squared away. So, I didn't say anything. But, it was eating at me and I feel so bad for that mom. And I guess I wanted to drag you into it. But, there you go. Now, good night. C. /subscribe/Plagiocephaly Quote Link to comment Share on other sites More sharing options...
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