Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 We had our evaluation at CT in Charlotte yesterday. It has been a longggg week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday morning in Atlanta (~1 hour each way), so there was already a lot of traveling going on... and after she finished yesterday morning, we headed straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then headed home. We got back really late and then I had to scramble around all morning getting 'the sister' to preschool and Mia to back to back therapy. I need a long NAP! Anyway, everything went fine at CT. It was actually really nice to SEE what I have been THINKING that I was seeing in photos and measurements. It makes me feel like I'm not just crazy. Mia really made them earn their keep, though. She has some sensory issues and really doesn't like being touched, especially her head.. so she screamed hysterically the entire time and all they were doing was trying to get photos and measurements! It made things very challenging. I was shocked that they even got the photos that they did because she barely stopped screaming the entire consult, and we were there for close to 2 hours! I was also worried that because she was so upset, the pictures wouldn't show her 'true' Torticollis, but they did for the most part. It's a bit worse in real life, but they saw that 'in person' - so it really doesn't matter. Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so concerned and I can't say that we would band. In fact, I can almost certainly say that we wouldn't. She will have hair that will mostly cover it, and it isn't severe by any means. It's to the right, so it's difficult to get good photos of, and it's a bit worse than it appears - but not by much. They said that the flatness straight across is mostly because of her fontanelle that is still open, and that it's something we should watch. But. And there's always a 'but', right? Because of the Torticollis/Plagiocephaly, she has some significant asymmetry going on.. which is what I was really concerned about going in. I had definitely noticed that her right ear seemed shifted forward.. but I had a hard time differentiating what was 'real' and what was her mommy over-analyzing things. So it was really comforting to have someone else see it, too. So my biggest concerns were her right ear being more forward than the left and her left eye seeming a bit smaller/weighed down (because there is more 'head' on that side). And those things were confirmed. The left side of her forehead is flatter than the right and her right ear/eye/cheek are anterior to the left. One side of her cheek/jaw is also shifted, but I can't recall which side. I want to say that it's the right, but I'm not sure. And for those reasons, they think that she absolutely needs a band. Clearly, it's a cosmetic issue... I don't really want her to be insecure about having her hair up because one ear is closer to her face than the other.. or because one eye is smaller. It would also make things like getting glasses that fit complicated. And it could absolutely cause jaw issues later... I've had my fair share, including braces as an adult - so that's not something we need. So I left the visit pretty certain that we would go ahead with it. But I still have some hestiations. I talked to her SLP (speech/feeding therapist) about it this morning and found out that she had Torticollis as a child, including surgery in the first grade to loosen the muscle! I had no idea! She said that she still has issues with finding glasses that fit on her ears and nose correctly, but that otherwise it doesn't bother her much - and she looks 'normal' to me. She seemed to agree with my outlook (that I stole from someone here! thank you, it's helped tremendously!) that we will never regret doing it, but may regret not doing it. I also asked her OT what she thought, and she seemed to agree also... though she gasped at the pricetag (and insisted that there were cheaper options) and she also said that usually kids that they see there with helmets have much more severe Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be too concerned about her flatness. It's the facial shift that really concerns me. She recommended that I ask her PT what she thought.. since she knows much more about Torticollis, but her PT is usually all rainbows and sunshine and writes most things off because they could be worse , so I don't think her opinion will really alter mine. So while I was pleased with our appointment for the most part, I still have some concerns/questions. If anyone has any insight, please share! 1) What ARE the other options, outside of CT? I know that there are other companies, but after researching it a bit - it seemed like CT was much more reputable and had better success. Are the other companies/types of bands significantly cheaper? The price won't hold us back if she needs it (it's $3k for us since we're military), but if it's like 'buying the name brand even though the store brand works fine', I'd like to know. I don't think that's the case, but I want to ask anyway! Cranial bands are a Tricare exclusion, so I'm not sure it's worth the trouble in appealing them a hundred times. 2) Can facial asymmetry ever correct itself without a band? Since Mia has developmental delays, she is not yet sitting and probably won't be anytime soon. She does spend a lot of time on her tummy, but the Tort/Plagio/Asymmetry has definitely worsened even with that. 3) If she does a band and her facial asymmetry corrects, how common is it to have it occur again after removing the band? 4) Could someone help me understand her measurements? I can't remember which mean what! Traditional Cranial Vault Asymmetry: 5 fzR-euL: 138 fzL-euR: 133 Cranial Vault Asymmetry: 8 fzR-OcpL: 148 fzL-OcpR: 140 Skull Base Asymmetry: 10 sn-tL: 83 sn:tR: 73 Also, when you have your DSi photos done, do you usually notice that the measurements are the same as the manual ones, better, or worse? I think that's it. Other than the inevitable, 'if you were in my shoes, what would you do?' question! I am uploading her scans under M shortly. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 Generally speaking, the top 3 most used band types (DOC, Star and Hanger) usually run between 3000-3600. There are some independant helmet companies/orthos that might run cheaper, and there are sometimes Star or Hanger orthos that cut breaks if there is no insurance coverage (though that is VERY rare). I know it is a steep price, and we were lucky to have 75% of ours covered by insurance, but when you keep in mind that it includes everything (the scan, custom fabrication, and every office visit - even in-between visits for unforeseen issues), it really isn't more than a doctor's office or specialist would charge for their office visits (when the majority of those are covered by insurance and we only pay co-pays, I think we lose sight of just how much doctors charge for stuff). Based on just her numbers, yes, it seems like her plagio is mild-moderate, but I do see your concern in her asymmetry because her skull base is 10mm off (that is the ears and lower part of the head). The asymmetry is the hardest and usually last to correct, so I think you definitely need to go the helmet route. My son wore 2 DOCBands and still had asymmetry after graduation, but only because he wasn't banded until 17 months old and was growing much slower. If you band her now, you have a better chance of correcting the asym (maybe not 100%, but my son went from 15mm to 6mm for his skull base, so younger babies should see some correction for sure). I've never heard of facial asym getting worse again after graduating from the band. If it corrects, it should be fine afterwards. My son's has gotten slightly better as he's gotten older, not his ears, but his eye and cheek asym has improved, with increased muscle tone in his face. I've been on this board for over a year and have NEVER heard of Tricare paying for a helmet ever. I feel bad that the military can't provide better coverage in that area. Where are you located again? You would just need to do a internet search to see if you have any other helmet options in your area. Again, with the amount of time I've been on this board, I've never heard a bad thing about Cranial Tech's DOCBand. I actually could have gotten a STARBand locally, but travelled almost 3 hours to CT because I was certain they would be able to help my son (who was older). Other bands, it just depends, they are supposed to work just as well, but if you end up going to an inexperienced ortho, you could come out of it worse than you went in (it's not a common thing, but it's definitely happened quite a few times that I've heard of). If you do find other options in your area, I would suggest posting them to see if anyone else has gone there and what experiences they had. (or you can do a search of old messages). The DSI scan does not take measurements at all. It's just a 3D image of the head, done before and after treatment. The hand measurements are the only numbers you'll see at CT, and they don't really put that much weight into the numbers anyway. They make a " headsicle " mold of the baby's head that you will see at every visit, so you can remember what they started as and see where they've made improvement. They do things more visually there. I tried to answer everything. Hope that helps! Jake-2.5 (DOCBand Grad 9/08) Jordan-5 > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday > morning in Atlanta (~1 hour each way), so there was already a lot of > traveling going on... and after she finished yesterday morning, we headed > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then > headed home. We got back really late and then I had to scramble around all > morning getting 'the sister' to preschool and Mia to back to back therapy. I > need a long NAP! > > Anyway, everything went fine at CT. It was actually really nice to SEE what > I have been THINKING that I was seeing in photos and measurements. It makes > me feel like I'm not just crazy. Mia really made them earn their keep, > though. She has some sensory issues and really doesn't like being touched, > especially her head.. so she screamed hysterically the entire time and all > they were doing was trying to get photos and measurements! It made things > very challenging. I was shocked that they even got the photos that they did > because she barely stopped screaming the entire consult, and we were there > for close to 2 hours! I was also worried that because she was so upset, the > pictures wouldn't show her 'true' Torticollis, but they did for the most > part. It's a bit worse in real life, but they saw that 'in person' - so it > really doesn't matter. > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > concerned and I can't say that we would band. In fact, I can almost > certainly say that we wouldn't. She will have hair that will mostly cover > it, and it isn't severe by any means. It's to the right, so it's difficult > to get good photos of, and it's a bit worse than it appears - but not by > much. They said that the flatness straight across is mostly because of her > fontanelle that is still open, and that it's something we should watch. > > But. And there's always a 'but', right? Because of the > Torticollis/Plagiocephaly, she has some significant asymmetry going on.. > which is what I was really concerned about going in. I had definitely > noticed that her right ear seemed shifted forward.. but I had a hard time > differentiating what was 'real' and what was her mommy over-analyzing > things. So it was really comforting to have someone else see it, too. So my > biggest concerns were her right ear being more forward than the left and her > left eye seeming a bit smaller/weighed down (because there is more 'head' on > that side). And those things were confirmed. The left side of her forehead > is flatter than the right and her right ear/eye/cheek are anterior to the > left. One side of her cheek/jaw is also shifted, but I can't recall which > side. I want to say that it's the right, but I'm not sure. > > And for those reasons, they think that she absolutely needs a band. Clearly, > it's a cosmetic issue... I don't really want her to be insecure about having > her hair up because one ear is closer to her face than the other.. or > because one eye is smaller. It would also make things like getting glasses > that fit complicated. And it could absolutely cause jaw issues later... I've > had my fair share, including braces as an adult - so that's not something we > need. So I left the visit pretty certain that we would go ahead with it. > > But I still have some hestiations. I talked to her SLP (speech/feeding > therapist) about it this morning and found out that she had Torticollis as a > child, including surgery in the first grade to loosen the muscle! I had no > idea! She said that she still has issues with finding glasses that fit on > her ears and nose correctly, but that otherwise it doesn't bother her much - > and she looks 'normal' to me. She seemed to agree with my outlook (that I > stole from someone here! thank you, it's helped tremendously!) that we will > never regret doing it, but may regret not doing it. I also asked her OT what > she thought, and she seemed to agree also... though she gasped at the > pricetag (and insisted that there were cheaper options) and she also said > that usually kids that they see there with helmets have much more severe > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be > too concerned about her flatness. It's the facial shift that really concerns > me. She recommended that I ask her PT what she thought.. since she knows > much more about Torticollis, but her PT is usually all rainbows and sunshine > and writes most things off because they *could* be worse , so I don't think > her opinion will really alter mine. > > So while I was pleased with our appointment for the most part, I still have > some concerns/questions. If anyone has any insight, please share! > > 1) What ARE the other options, outside of CT? I know that there are other > companies, but after researching it a bit - it seemed like CT was much more > reputable and had better success. Are the other companies/types of bands > significantly cheaper? The price won't hold us back if she needs it (it's > $3k for us since we're military), but if it's like 'buying the name brand > even though the store brand works fine', I'd like to know. I don't think > that's the case, but I want to ask anyway! Cranial bands are a Tricare > exclusion, so I'm not sure it's worth the trouble in appealing them a > hundred times. > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > developmental delays, she is not yet sitting and probably won't be anytime > soon. She does spend a lot of time on her tummy, but the > Tort/Plagio/Asymmetry has definitely worsened even with that. > > 3) If she does a band and her facial asymmetry corrects, how common is it to > have it occur again after removing the band? > > 4) Could someone help me understand her measurements? I can't remember which > mean what! > > Traditional Cranial Vault Asymmetry: 5 > fzR-euL: 138 > fzL-euR: 133 > > Cranial Vault Asymmetry: 8 > fzR-OcpL: 148 > fzL-OcpR: 140 > > Skull Base Asymmetry: 10 > sn-tL: 83 > sn:tR: 73 > > Also, when you have your DSi photos done, do you usually notice that the > measurements are the same as the manual ones, better, or worse? > > I think that's it. Other than the inevitable, 'if you were in my shoes, what > would you do?' question! I am uploading her scans under M shortly. > > Kim > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 , Thank you so much for your response! I really appreciate it. I'm laughing at 'headsicle', ha!! We traveled to CT because I repeatedly read exactly what you mentioned.. and I figured that it made more sense to start with 'the best' than end up with 'the best'. I'd rather not waste time/money using someone closer if we'll end up with less success in the end. You're right, it totally sucks that Tricare won't cover it. I think it's ridiculous that any insurance won't, actually. We've had to jump through some hoops, but they've ultimately covered all of her specialists, tests, therapy, special formula, etc. So this is the first time that we've dealt with then outright refusing to cover something. I had braces as an adult a few years ago, so I'm just trying to look at this like I did that. I have never regretted my decision to do that, even though some may consider it 'cosmetic', and I'm sure we won't regret this decision, either. But if we don't do it and her asymmetry does not correct or worsens, I'll always wonder 'what if' - but then it will be too late. They did say that we can use Angel Flight, but I'm not sure if it would just make things more complicated. Has anyone done that? While the drive wouldn't be fun, it could be worse. We will find our where we're moving next tomorrow.. if it's to Norfolk, there is a CT about the same distance as what we would be traveling now. If it's San Diego, there's one there. Anywhere else may be a bit tricky, so we'll see. There is a Hanger somewhere near here, I think.. but I've read a lot of negative experiences about them. I am sure that there are plenty of people who think other brands are just as good as CT, but CT seems to be the most consistent - from what I've researched. Thanks for the clarification on the DSi, I forgot that it was just digital photographs compiled into a 'headsicle' - for some reason I thought that the 3-D model would also give measurements, so it made me wonder how close they would be to manual measurements. The skull base measurement is from ear to ear across the back of the head? So where you see her pen outline in the second set of photos, that's where the 10mm are 'missing', right? Or am I misunderstanding you? These measurements are a little (lot!) confusing! Kim > > > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday > > morning in Atlanta (~1 hour each way), so there was already a lot of > > traveling going on... and after she finished yesterday morning, we headed > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then > > headed home. We got back really late and then I had to scramble around all > > morning getting 'the sister' to preschool and Mia to back to back therapy. I > > need a long NAP! > > > > Anyway, everything went fine at CT. It was actually really nice to SEE what > > I have been THINKING that I was seeing in photos and measurements. It makes > > me feel like I'm not just crazy. Mia really made them earn their keep, > > though. She has some sensory issues and really doesn't like being touched, > > especially her head.. so she screamed hysterically the entire time and all > > they were doing was trying to get photos and measurements! It made things > > very challenging. I was shocked that they even got the photos that they did > > because she barely stopped screaming the entire consult, and we were there > > for close to 2 hours! I was also worried that because she was so upset, the > > pictures wouldn't show her 'true' Torticollis, but they did for the most > > part. It's a bit worse in real life, but they saw that 'in person' - so it > > really doesn't matter. > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > > concerned and I can't say that we would band. In fact, I can almost > > certainly say that we wouldn't. She will have hair that will mostly cover > > it, and it isn't severe by any means. It's to the right, so it's difficult > > to get good photos of, and it's a bit worse than it appears - but not by > > much. They said that the flatness straight across is mostly because of her > > fontanelle that is still open, and that it's something we should watch. > > > > But. And there's always a 'but', right? Because of the > > Torticollis/Plagiocephaly, she has some significant asymmetry going on.. > > which is what I was really concerned about going in. I had definitely > > noticed that her right ear seemed shifted forward.. but I had a hard time > > differentiating what was 'real' and what was her mommy over-analyzing > > things. So it was really comforting to have someone else see it, too. So my > > biggest concerns were her right ear being more forward than the left and her > > left eye seeming a bit smaller/weighed down (because there is more 'head' on > > that side). And those things were confirmed. The left side of her forehead > > is flatter than the right and her right ear/eye/cheek are anterior to the > > left. One side of her cheek/jaw is also shifted, but I can't recall which > > side. I want to say that it's the right, but I'm not sure. > > > > And for those reasons, they think that she absolutely needs a band. Clearly, > > it's a cosmetic issue... I don't really want her to be insecure about having > > her hair up because one ear is closer to her face than the other.. or > > because one eye is smaller. It would also make things like getting glasses > > that fit complicated. And it could absolutely cause jaw issues later... I've > > had my fair share, including braces as an adult - so that's not something we > > need. So I left the visit pretty certain that we would go ahead with it. > > > > But I still have some hestiations. I talked to her SLP (speech/feeding > > therapist) about it this morning and found out that she had Torticollis as a > > child, including surgery in the first grade to loosen the muscle! I had no > > idea! She said that she still has issues with finding glasses that fit on > > her ears and nose correctly, but that otherwise it doesn't bother her much - > > and she looks 'normal' to me. She seemed to agree with my outlook (that I > > stole from someone here! thank you, it's helped tremendously!) that we will > > never regret doing it, but may regret not doing it. I also asked her OT what > > she thought, and she seemed to agree also... though she gasped at the > > pricetag (and insisted that there were cheaper options) and she also said > > that usually kids that they see there with helmets have much more severe > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be > > too concerned about her flatness. It's the facial shift that really concerns > > me. She recommended that I ask her PT what she thought.. since she knows > > much more about Torticollis, but her PT is usually all rainbows and sunshine > > and writes most things off because they *could* be worse , so I don't think > > her opinion will really alter mine. > > > > So while I was pleased with our appointment for the most part, I still have > > some concerns/questions. If anyone has any insight, please share! > > > > 1) What ARE the other options, outside of CT? I know that there are other > > companies, but after researching it a bit - it seemed like CT was much more > > reputable and had better success. Are the other companies/types of bands > > significantly cheaper? The price won't hold us back if she needs it (it's > > $3k for us since we're military), but if it's like 'buying the name brand > > even though the store brand works fine', I'd like to know. I don't think > > that's the case, but I want to ask anyway! Cranial bands are a Tricare > > exclusion, so I'm not sure it's worth the trouble in appealing them a > > hundred times. > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > > developmental delays, she is not yet sitting and probably won't be anytime > > soon. She does spend a lot of time on her tummy, but the > > Tort/Plagio/Asymmetry has definitely worsened even with that. > > > > 3) If she does a band and her facial asymmetry corrects, how common is it to > > have it occur again after removing the band? > > > > 4) Could someone help me understand her measurements? I can't remember which > > mean what! > > > > Traditional Cranial Vault Asymmetry: 5 > > fzR-euL: 138 > > fzL-euR: 133 > > > > Cranial Vault Asymmetry: 8 > > fzR-OcpL: 148 > > fzL-OcpR: 140 > > > > Skull Base Asymmetry: 10 > > sn-tL: 83 > > sn:tR: 73 > > > > Also, when you have your DSi photos done, do you usually notice that the > > measurements are the same as the manual ones, better, or worse? > > > > I think that's it. Other than the inevitable, 'if you were in my shoes, what > > would you do?' question! I am uploading her scans under M shortly. > > > > Kim > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 Sorry, I hadn't even looked at her photostudy when I first responded, I was simply going by the numbers you posted in your message. What stuck out to me there, was that the highest number was in her skull base, and " typically " the cranial vault numbers will be higher or equal to the skull base, not less than, so that jumped out to me there. The skull base asym is the difference of each side measured nose to ear (nose to right ear minus nose to left ear, or vice versa). So in her photostudy, the one where she's lying down, looking up her nose, and the pen marks are showing the misalignment in her ears...that's the 10mm of asym in her skull base. As the ears shift into alignment, that number will go down. At least two people on the board have used Angel Flights, so hopefully they'll tell you their experiences. Hopefully you'll end up in San Diego and it won't be an issue! Good luck! Jake-2.5 (DOCBand Grad 9/08) Jordan-5 > > > > > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg > > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday > > > morning in Atlanta (~1 hour each way), so there was already a lot of > > > traveling going on... and after she finished yesterday morning, we headed > > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then > > > headed home. We got back really late and then I had to scramble around all > > > morning getting 'the sister' to preschool and Mia to back to back therapy. I > > > need a long NAP! > > > > > > Anyway, everything went fine at CT. It was actually really nice to SEE what > > > I have been THINKING that I was seeing in photos and measurements. It makes > > > me feel like I'm not just crazy. Mia really made them earn their keep, > > > though. She has some sensory issues and really doesn't like being touched, > > > especially her head.. so she screamed hysterically the entire time and all > > > they were doing was trying to get photos and measurements! It made things > > > very challenging. I was shocked that they even got the photos that they did > > > because she barely stopped screaming the entire consult, and we were there > > > for close to 2 hours! I was also worried that because she was so upset, the > > > pictures wouldn't show her 'true' Torticollis, but they did for the most > > > part. It's a bit worse in real life, but they saw that 'in person' - so it > > > really doesn't matter. > > > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > > > concerned and I can't say that we would band. In fact, I can almost > > > certainly say that we wouldn't. She will have hair that will mostly cover > > > it, and it isn't severe by any means. It's to the right, so it's difficult > > > to get good photos of, and it's a bit worse than it appears - but not by > > > much. They said that the flatness straight across is mostly because of her > > > fontanelle that is still open, and that it's something we should watch. > > > > > > But. And there's always a 'but', right? Because of the > > > Torticollis/Plagiocephaly, she has some significant asymmetry going on.. > > > which is what I was really concerned about going in. I had definitely > > > noticed that her right ear seemed shifted forward.. but I had a hard time > > > differentiating what was 'real' and what was her mommy over-analyzing > > > things. So it was really comforting to have someone else see it, too. So my > > > biggest concerns were her right ear being more forward than the left and her > > > left eye seeming a bit smaller/weighed down (because there is more 'head' on > > > that side). And those things were confirmed. The left side of her forehead > > > is flatter than the right and her right ear/eye/cheek are anterior to the > > > left. One side of her cheek/jaw is also shifted, but I can't recall which > > > side. I want to say that it's the right, but I'm not sure. > > > > > > And for those reasons, they think that she absolutely needs a band. Clearly, > > > it's a cosmetic issue... I don't really want her to be insecure about having > > > her hair up because one ear is closer to her face than the other.. or > > > because one eye is smaller. It would also make things like getting glasses > > > that fit complicated. And it could absolutely cause jaw issues later... I've > > > had my fair share, including braces as an adult - so that's not something we > > > need. So I left the visit pretty certain that we would go ahead with it. > > > > > > But I still have some hestiations. I talked to her SLP (speech/feeding > > > therapist) about it this morning and found out that she had Torticollis as a > > > child, including surgery in the first grade to loosen the muscle! I had no > > > idea! She said that she still has issues with finding glasses that fit on > > > her ears and nose correctly, but that otherwise it doesn't bother her much - > > > and she looks 'normal' to me. She seemed to agree with my outlook (that I > > > stole from someone here! thank you, it's helped tremendously!) that we will > > > never regret doing it, but may regret not doing it. I also asked her OT what > > > she thought, and she seemed to agree also... though she gasped at the > > > pricetag (and insisted that there were cheaper options) and she also said > > > that usually kids that they see there with helmets have much more severe > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be > > > too concerned about her flatness. It's the facial shift that really concerns > > > me. She recommended that I ask her PT what she thought.. since she knows > > > much more about Torticollis, but her PT is usually all rainbows and sunshine > > > and writes most things off because they *could* be worse , so I don't think > > > her opinion will really alter mine. > > > > > > So while I was pleased with our appointment for the most part, I still have > > > some concerns/questions. If anyone has any insight, please share! > > > > > > 1) What ARE the other options, outside of CT? I know that there are other > > > companies, but after researching it a bit - it seemed like CT was much more > > > reputable and had better success. Are the other companies/types of bands > > > significantly cheaper? The price won't hold us back if she needs it (it's > > > $3k for us since we're military), but if it's like 'buying the name brand > > > even though the store brand works fine', I'd like to know. I don't think > > > that's the case, but I want to ask anyway! Cranial bands are a Tricare > > > exclusion, so I'm not sure it's worth the trouble in appealing them a > > > hundred times. > > > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > > > developmental delays, she is not yet sitting and probably won't be anytime > > > soon. She does spend a lot of time on her tummy, but the > > > Tort/Plagio/Asymmetry has definitely worsened even with that. > > > > > > 3) If she does a band and her facial asymmetry corrects, how common is it to > > > have it occur again after removing the band? > > > > > > 4) Could someone help me understand her measurements? I can't remember which > > > mean what! > > > > > > Traditional Cranial Vault Asymmetry: 5 > > > fzR-euL: 138 > > > fzL-euR: 133 > > > > > > Cranial Vault Asymmetry: 8 > > > fzR-OcpL: 148 > > > fzL-OcpR: 140 > > > > > > Skull Base Asymmetry: 10 > > > sn-tL: 83 > > > sn:tR: 73 > > > > > > Also, when you have your DSi photos done, do you usually notice that the > > > measurements are the same as the manual ones, better, or worse? > > > > > > I think that's it. Other than the inevitable, 'if you were in my shoes, what > > > would you do?' question! I am uploading her scans under M shortly. > > > > > > Kim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 I use angel flights weeklySent via BlackBerry from T-MobileFrom: "" Date: Thu, 16 Apr 2009 19:42:37 -0000<Plagiocephaly >Subject: Re: Mia's Evaluation/Pictures Sorry, I hadn't even looked at her photostudy when I first responded, I was simply going by the numbers you posted in your message. What stuck out to me there, was that the highest number was in her skull base, and " typically " the cranial vault numbers will be higher or equal to the skull base, not less than, so that jumped out to me there. The skull base asym is the difference of each side measured nose to ear (nose to right ear minus nose to left ear, or vice versa). So in her photostudy, the one where she's lying down, looking up her nose, and the pen marks are showing the misalignment in her ears...that's the 10mm of asym in her skull base. As the ears shift into alignment, that number will go down. At least two people on the board have used Angel Flights, so hopefully they'll tell you their experiences. Hopefully you'll end up in San Diego and it won't be an issue! Good luck! Jake-2.5 (DOCBand Grad 9/08) Jordan-5 > > > > > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg > > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday > > > morning in Atlanta (~1 hour each way), so there was already a lot of > > > traveling going on... and after she finished yesterday morning, we headed > > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then > > > headed home. We got back really late and then I had to scramble around all > > > morning getting 'the sister' to preschool and Mia to back to back therapy. I > > > need a long NAP! > > > > > > Anyway, everything went fine at CT. It was actually really nice to SEE what > > > I have been THINKING that I was seeing in photos and measurements. It makes > > > me feel like I'm not just crazy. Mia really made them earn their keep, > > > though. She has some sensory issues and really doesn't like being touched, > > > especially her head.. so she screamed hysterically the entire time and all > > > they were doing was trying to get photos and measurements! It made things > > > very challenging. I was shocked that they even got the photos that they did > > > because she barely stopped screaming the entire consult, and we were there > > > for close to 2 hours! I was also worried that because she was so upset, the > > > pictures wouldn't show her 'true' Torticollis, but they did for the most > > > part. It's a bit worse in real life, but they saw that 'in person' - so it > > > really doesn't matter. > > > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > > > concerned and I can't say that we would band. In fact, I can almost > > > certainly say that we wouldn't. She will have hair that will mostly cover > > > it, and it isn't severe by any means. It's to the right, so it's difficult > > > to get good photos of, and it's a bit worse than it appears - but not by > > > much. They said that the flatness straight across is mostly because of her > > > fontanelle that is still open, and that it's something we should watch. > > > > > > But. And there's always a 'but', right? Because of the > > > Torticollis/Plagiocephaly, she has some significant asymmetry going on.. > > > which is what I was really concerned about going in. I had definitely > > > noticed that her right ear seemed shifted forward.. but I had a hard time > > > differentiating what was 'real' and what was her mommy over-analyzing > > > things. So it was really comforting to have someone else see it, too. So my > > > biggest concerns were her right ear being more forward than the left and her > > > left eye seeming a bit smaller/weighed down (because there is more 'head' on > > > that side). And those things were confirmed. The left side of her forehead > > > is flatter than the right and her right ear/eye/cheek are anterior to the > > > left. One side of her cheek/jaw is also shifted, but I can't recall which > > > side. I want to say that it's the right, but I'm not sure. > > > > > > And for those reasons, they think that she absolutely needs a band. Clearly, > > > it's a cosmetic issue... I don't really want her to be insecure about having > > > her hair up because one ear is closer to her face than the other.. or > > > because one eye is smaller. It would also make things like getting glasses > > > that fit complicated. And it could absolutely cause jaw issues later... I've > > > had my fair share, including braces as an adult - so that's not something we > > > need. So I left the visit pretty certain that we would go ahead with it. > > > > > > But I still have some hestiations. I talked to her SLP (speech/feeding > > > therapist) about it this morning and found out that she had Torticollis as a > > > child, including surgery in the first grade to loosen the muscle! I had no > > > idea! She said that she still has issues with finding glasses that fit on > > > her ears and nose correctly, but that otherwise it doesn't bother her much - > > > and she looks 'normal' to me. She seemed to agree with my outlook (that I > > > stole from someone here! thank you, it's helped tremendously!) that we will > > > never regret doing it, but may regret not doing it. I also asked her OT what > > > she thought, and she seemed to agree also... though she gasped at the > > > pricetag (and insisted that there were cheaper options) and she also said > > > that usually kids that they see there with helmets have much more severe > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be > > > too concerned about her flatness. It's the facial shift that really concerns > > > me. She recommended that I ask her PT what she thought.. since she knows > > > much more about Torticollis, but her PT is usually all rainbows and sunshine > > > and writes most things off because they *could* be worse , so I don't think > > > her opinion will really alter mine. > > > > > > So while I was pleased with our appointment for the most part, I still have > > > some concerns/questions. If anyone has any insight, please share! > > > > > > 1) What ARE the other options, outside of CT? I know that there are other > > > companies, but after researching it a bit - it seemed like CT was much more > > > reputable and had better success. Are the other companies/types of bands > > > significantly cheaper? The price won't hold us back if she needs it (it's > > > $3k for us since we're military), but if it's like 'buying the name brand > > > even though the store brand works fine', I'd like to know. I don't think > > > that's the case, but I want to ask anyway! Cranial bands are a Tricare > > > exclusion, so I'm not sure it's worth the trouble in appealing them a > > > hundred times. > > > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > > > developmental delays, she is not yet sitting and probably won't be anytime > > > soon. She does spend a lot of time on her tummy, but the > > > Tort/Plagio/Asymmetry has definitely worsened even with that. > > > > > > 3) If she does a band and her facial asymmetry corrects, how common is it to > > > have it occur again after removing the band? > > > > > > 4) Could someone help me understand her measurements? I can't remember which > > > mean what! > > > > > > Traditional Cranial Vault Asymmetry: 5 > > > fzR-euL: 138 > > > fzL-euR: 133 > > > > > > Cranial Vault Asymmetry: 8 > > > fzR-OcpL: 148 > > > fzL-OcpR: 140 > > > > > > Skull Base Asymmetry: 10 > > > sn-tL: 83 > > > sn:tR: 73 > > > > > > Also, when you have your DSi photos done, do you usually notice that the > > > measurements are the same as the manual ones, better, or worse? > > > > > > I think that's it. Other than the inevitable, 'if you were in my shoes, what > > > would you do?' question! I am uploading her scans under M shortly. > > > > > > Kim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 Do you mind sharing how well it works for you? When you get there, do you take a taxi or rent a car? Is it easy to get flights back or do you often have to stay overnight? Do the flights depart/arrive near you or at a major airport? Kim On Thu, Apr 16, 2009 at 4:49 PM, <mommy2jaylina@...> wrote: I use angel flights weekly Sent via BlackBerry from T-Mobile From: " " Date: Thu, 16 Apr 2009 19:42:37 -0000<Plagiocephaly >Subject: Re: Mia's Evaluation/Pictures Sorry, I hadn't even looked at her photostudy when I first responded, I was simply going by the numbers you posted in your message. What stuck out to me there, was that the highest number was in her skull base, and " typically " the cranial vault numbers will be higher or equal to the skull base, not less than, so that jumped out to me there. The skull base asym is the difference of each side measured nose to ear (nose to right ear minus nose to left ear, or vice versa). So in her photostudy, the one where she's lying down, looking up her nose, and the pen marks are showing the misalignment in her ears...that's the 10mm of asym in her skull base. As the ears shift into alignment, that number will go down. At least two people on the board have used Angel Flights, so hopefully they'll tell you their experiences. Hopefully you'll end up in San Diego and it won't be an issue!Good luck!Jake-2.5 (DOCBand Grad 9/08) Jordan-5 > > >> > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg> > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday> > > morning in Atlanta (~1 hour each way), so there was already a lot of > > > traveling going on... and after she finished yesterday morning, we headed> > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then> > > headed home. We got back really late and then I had to scramble around all > > > morning getting 'the sister' to preschool and Mia to back to back therapy. I> > > need a long NAP!> > > > > > Anyway, everything went fine at CT. It was actually really nice to SEE what > > > I have been THINKING that I was seeing in photos and measurements. It makes> > > me feel like I'm not just crazy. Mia really made them earn their keep,> > > though. She has some sensory issues and really doesn't like being touched, > > > especially her head.. so she screamed hysterically the entire time and all> > > they were doing was trying to get photos and measurements! It made things> > > very challenging. I was shocked that they even got the photos that they did > > > because she barely stopped screaming the entire consult, and we were there> > > for close to 2 hours! I was also worried that because she was so upset, the> > > pictures wouldn't show her 'true' Torticollis, but they did for the most > > > part. It's a bit worse in real life, but they saw that 'in person' - so it> > > really doesn't matter.> > > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > > > concerned and I can't say that we would band. In fact, I can almost> > > certainly say that we wouldn't. She will have hair that will mostly cover> > > it, and it isn't severe by any means. It's to the right, so it's difficult > > > to get good photos of, and it's a bit worse than it appears - but not by> > > much. They said that the flatness straight across is mostly because of her> > > fontanelle that is still open, and that it's something we should watch. > > > > > > But. And there's always a 'but', right? Because of the> > > Torticollis/Plagiocephaly, she has some significant asymmetry going on..> > > which is what I was really concerned about going in. I had definitely > > > noticed that her right ear seemed shifted forward.. but I had a hard time> > > differentiating what was 'real' and what was her mommy over-analyzing> > > things. So it was really comforting to have someone else see it, too. So my > > > biggest concerns were her right ear being more forward than the left and her> > > left eye seeming a bit smaller/weighed down (because there is more 'head' on> > > that side). And those things were confirmed. The left side of her forehead > > > is flatter than the right and her right ear/eye/cheek are anterior to the> > > left. One side of her cheek/jaw is also shifted, but I can't recall which> > > side. I want to say that it's the right, but I'm not sure. > > > > > > And for those reasons, they think that she absolutely needs a band. Clearly,> > > it's a cosmetic issue... I don't really want her to be insecure about having> > > her hair up because one ear is closer to her face than the other.. or > > > because one eye is smaller. It would also make things like getting glasses> > > that fit complicated. And it could absolutely cause jaw issues later... I've> > > had my fair share, including braces as an adult - so that's not something we > > > need. So I left the visit pretty certain that we would go ahead with it.> > > > > > But I still have some hestiations. I talked to her SLP (speech/feeding> > > therapist) about it this morning and found out that she had Torticollis as a > > > child, including surgery in the first grade to loosen the muscle! I had no> > > idea! She said that she still has issues with finding glasses that fit on> > > her ears and nose correctly, but that otherwise it doesn't bother her much - > > > and she looks 'normal' to me. She seemed to agree with my outlook (that I> > > stole from someone here! thank you, it's helped tremendously!) that we will> > > never regret doing it, but may regret not doing it. I also asked her OT what > > > she thought, and she seemed to agree also... though she gasped at the> > > pricetag (and insisted that there were cheaper options) and she also said> > > that usually kids that they see there with helmets have much more severe > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be> > > too concerned about her flatness. It's the facial shift that really concerns> > > me. She recommended that I ask her PT what she thought.. since she knows > > > much more about Torticollis, but her PT is usually all rainbows and sunshine> > > and writes most things off because they *could* be worse , so I don't think> > > her opinion will really alter mine. > > > > > > So while I was pleased with our appointment for the most part, I still have> > > some concerns/questions. If anyone has any insight, please share!> > > > > > 1) What ARE the other options, outside of CT? I know that there are other > > > companies, but after researching it a bit - it seemed like CT was much more> > > reputable and had better success. Are the other companies/types of bands> > > significantly cheaper? The price won't hold us back if she needs it (it's > > > $3k for us since we're military), but if it's like 'buying the name brand> > > even though the store brand works fine', I'd like to know. I don't think> > > that's the case, but I want to ask anyway! Cranial bands are a Tricare > > > exclusion, so I'm not sure it's worth the trouble in appealing them a> > > hundred times.> > > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > > > developmental delays, she is not yet sitting and probably won't be anytime> > > soon. She does spend a lot of time on her tummy, but the> > > Tort/Plagio/Asymmetry has definitely worsened even with that. > > > > > > 3) If she does a band and her facial asymmetry corrects, how common is it to> > > have it occur again after removing the band?> > > > > > 4) Could someone help me understand her measurements? I can't remember which > > > mean what!> > > > > > Traditional Cranial Vault Asymmetry: 5> > > fzR-euL: 138> > > fzL-euR: 133> > > > > > Cranial Vault Asymmetry: 8 > > > fzR-OcpL: 148> > > fzL-OcpR: 140> > > > > > Skull Base Asymmetry: 10> > > sn-tL: 83> > > sn:tR: 73> > > > > > Also, when you have your DSi photos done, do you usually notice that the > > > measurements are the same as the manual ones, better, or worse?> > > > > > I think that's it. Other than the inevitable, 'if you were in my shoes, what> > > would you do?' question! I am uploading her scans under M shortly. > > > > > > Kim> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 Hey! You will always stay over night. Our appointments are always on Mondays. So our flights are always Sunday morning. We stay over night, go to our 7 am appt at CT and meet the pilot at the airport at 10 am. We usually take a taxi, and when we do stay over night we stay at the Mc house. The pilots never fly out of major airports, they always fly from the smaller ones which, can be semi near the normal airports. The planes are small usuallly 4 seats, so taking a stroller is a no. Which really sucks. But, you do what you have to do. My son is so used to it by now. All the pilots are so nice! Angel flights has been greatSent via BlackBerry from T-MobileFrom: K S Date: Thu, 16 Apr 2009 17:17:33 -0500<Plagiocephaly >Subject: Re: Re: Mia's Evaluation/Pictures Do you mind sharing how well it works for you? When you get there, do you take a taxi or rent a car? Is it easy to get flights back or do you often have to stay overnight? Do the flights depart/arrive near you or at a major airport? KimOn Thu, Apr 16, 2009 at 4:49 PM, <mommy2jaylinaaol> wrote:I use angel flights weekly Sent via BlackBerry from T-MobileFrom: " " Date: Thu, 16 Apr 2009 19:42:37 -0000<Plagiocephaly >Subject: Re: Mia's Evaluation/Pictures Sorry, I hadn't even looked at her photostudy when I first responded, I was simply going by the numbers you posted in your message. What stuck out to me there, was that the highest number was in her skull base, and " typically " the cranial vault numbers will be higher or equal to the skull base, not less than, so that jumped out to me there.The skull base asym is the difference of each side measured nose to ear (nose to right ear minus nose to left ear, or vice versa). So in her photostudy, the one where she's lying down, looking up her nose, and the pen marks are showing the misalignment in her ears...that's the 10mm of asym in her skull base. As the ears shift into alignment, that number will go down. At least two people on the board have used Angel Flights, so hopefully they'll tell you their experiences. Hopefully you'll end up in San Diego and it won't be an issue!Good luck!Jake-2.5 (DOCBand Grad 9/08) Jordan-5 > > >> > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg> > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday> > > morning in Atlanta (~1 hour each way), so there was already a lot of > > > traveling going on... and after she finished yesterday morning, we headed> > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then> > > headed home. We got back really late and then I had to scramble around all > > > morning getting 'the sister' to preschool and Mia to back to back therapy. I> > > need a long NAP!> > > > > > Anyway, everything went fine at CT. It was actually really nice to SEE what > > > I have been THINKING that I was seeing in photos and measurements. It makes> > > me feel like I'm not just crazy. Mia really made them earn their keep,> > > though. She has some sensory issues and really doesn't like being touched, > > > especially her head.. so she screamed hysterically the entire time and all> > > they were doing was trying to get photos and measurements! It made things> > > very challenging. I was shocked that they even got the photos that they did > > > because she barely stopped screaming the entire consult, and we were there> > > for close to 2 hours! I was also worried that because she was so upset, the> > > pictures wouldn't show her 'true' Torticollis, but they did for the most > > > part. It's a bit worse in real life, but they saw that 'in person' - so it> > > really doesn't matter.> > > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > > > concerned and I can't say that we would band. In fact, I can almost> > > certainly say that we wouldn't. She will have hair that will mostly cover> > > it, and it isn't severe by any means. It's to the right, so it's difficult > > > to get good photos of, and it's a bit worse than it appears - but not by> > > much. They said that the flatness straight across is mostly because of her> > > fontanelle that is still open, and that it's something we should watch. > > > > > > But. And there's always a 'but', right? Because of the> > > Torticollis/Plagiocephaly, she has some significant asymmetry going on..> > > which is what I was really concerned about going in. I had definitely > > > noticed that her right ear seemed shifted forward.. but I had a hard time> > > differentiating what was 'real' and what was her mommy over-analyzing> > > things. So it was really comforting to have someone else see it, too. So my > > > biggest concerns were her right ear being more forward than the left and her> > > left eye seeming a bit smaller/weighed down (because there is more 'head' on> > > that side). And those things were confirmed. The left side of her forehead > > > is flatter than the right and her right ear/eye/cheek are anterior to the> > > left. One side of her cheek/jaw is also shifted, but I can't recall which> > > side. I want to say that it's the right, but I'm not sure. > > > > > > And for those reasons, they think that she absolutely needs a band. Clearly,> > > it's a cosmetic issue... I don't really want her to be insecure about having> > > her hair up because one ear is closer to her face than the other.. or > > > because one eye is smaller. It would also make things like getting glasses> > > that fit complicated. And it could absolutely cause jaw issues later... I've> > > had my fair share, including braces as an adult - so that's not something we > > > need. So I left the visit pretty certain that we would go ahead with it.> > > > > > But I still have some hestiations. I talked to her SLP (speech/feeding> > > therapist) about it this morning and found out that she had Torticollis as a > > > child, including surgery in the first grade to loosen the muscle! I had no> > > idea! She said that she still has issues with finding glasses that fit on> > > her ears and nose correctly, but that otherwise it doesn't bother her much - > > > and she looks 'normal' to me. She seemed to agree with my outlook (that I> > > stole from someone here! thank you, it's helped tremendously!) that we will> > > never regret doing it, but may regret not doing it. I also asked her OT what > > > she thought, and she seemed to agree also... though she gasped at the> > > pricetag (and insisted that there were cheaper options) and she also said> > > that usually kids that they see there with helmets have much more severe > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be> > > too concerned about her flatness. It's the facial shift that really concerns> > > me. She recommended that I ask her PT what she thought.. since she knows > > > much more about Torticollis, but her PT is usually all rainbows and sunshine> > > and writes most things off because they *could* be worse , so I don't think> > > her opinion will really alter mine. > > > > > > So while I was pleased with our appointment for the most part, I still have> > > some concerns/questions. If anyone has any insight, please share!> > > > > > 1) What ARE the other options, outside of CT? I know that there are other > > > companies, but after researching it a bit - it seemed like CT was much more> > > reputable and had better success. Are the other companies/types of bands> > > significantly cheaper? The price won't hold us back if she needs it (it's > > > $3k for us since we're military), but if it's like 'buying the name brand> > > even though the store brand works fine', I'd like to know. I don't think> > > that's the case, but I want to ask anyway! Cranial bands are a Tricare > > > exclusion, so I'm not sure it's worth the trouble in appealing them a> > > hundred times.> > > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > > > developmental delays, she is not yet sitting and probably won't be anytime> > > soon. She does spend a lot of time on her tummy, but the> > > Tort/Plagio/Asymmetry has definitely worsened even with that. > > > > > > 3) If she does a band and her facial asymmetry corrects, how common is it to> > > have it occur again after removing the band?> > > > > > 4) Could someone help me understand her measurements? I can't remember which > > > mean what!> > > > > > Traditional Cranial Vault Asymmetry: 5> > > fzR-euL: 138> > > fzL-euR: 133> > > > > > Cranial Vault Asymmetry: 8 > > > fzR-OcpL: 148> > > fzL-OcpR: 140> > > > > > Skull Base Asymmetry: 10> > > sn-tL: 83> > > sn:tR: 73> > > > > > Also, when you have your DSi photos done, do you usually notice that the > > > measurements are the same as the manual ones, better, or worse?> > > > > > I think that's it. Other than the inevitable, 'if you were in my shoes, what> > > would you do?' question! I am uploading her scans under M shortly. > > > > > > Kim> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 , You're a genius as far as I'm concerned ). Thank you for explaining that! Kim On Thu, Apr 16, 2009 at 2:42 PM, <nwilkens2275@...> wrote: Sorry, I hadn't even looked at her photostudy when I first responded, I was simply going by the numbers you posted in your message. What stuck out to me there, was that the highest number was in her skull base, and " typically " the cranial vault numbers will be higher or equal to the skull base, not less than, so that jumped out to me there. The skull base asym is the difference of each side measured nose to ear (nose to right ear minus nose to left ear, or vice versa). So in her photostudy, the one where she's lying down, looking up her nose, and the pen marks are showing the misalignment in her ears...that's the 10mm of asym in her skull base. As the ears shift into alignment, that number will go down. At least two people on the board have used Angel Flights, so hopefully they'll tell you their experiences. Hopefully you'll end up in San Diego and it won't be an issue!Good luck! Jake-2.5 (DOCBand Grad 9/08)Jordan-5 > > >> > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg> > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday> > > morning in Atlanta (~1 hour each way), so there was already a lot of > > > traveling going on... and after she finished yesterday morning, we headed> > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then> > > headed home. We got back really late and then I had to scramble around all > > > morning getting 'the sister' to preschool and Mia to back to back therapy. I> > > need a long NAP!> > > > > > Anyway, everything went fine at CT. It was actually really nice to SEE what > > > I have been THINKING that I was seeing in photos and measurements. It makes> > > me feel like I'm not just crazy. Mia really made them earn their keep,> > > though. She has some sensory issues and really doesn't like being touched, > > > especially her head.. so she screamed hysterically the entire time and all> > > they were doing was trying to get photos and measurements! It made things> > > very challenging. I was shocked that they even got the photos that they did > > > because she barely stopped screaming the entire consult, and we were there> > > for close to 2 hours! I was also worried that because she was so upset, the> > > pictures wouldn't show her 'true' Torticollis, but they did for the most > > > part. It's a bit worse in real life, but they saw that 'in person' - so it> > > really doesn't matter.> > > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > > > concerned and I can't say that we would band. In fact, I can almost> > > certainly say that we wouldn't. She will have hair that will mostly cover> > > it, and it isn't severe by any means. It's to the right, so it's difficult > > > to get good photos of, and it's a bit worse than it appears - but not by> > > much. They said that the flatness straight across is mostly because of her> > > fontanelle that is still open, and that it's something we should watch. > > > > > > But. And there's always a 'but', right? Because of the> > > Torticollis/Plagiocephaly, she has some significant asymmetry going on..> > > which is what I was really concerned about going in. I had definitely > > > noticed that her right ear seemed shifted forward.. but I had a hard time> > > differentiating what was 'real' and what was her mommy over-analyzing> > > things. So it was really comforting to have someone else see it, too. So my > > > biggest concerns were her right ear being more forward than the left and her> > > left eye seeming a bit smaller/weighed down (because there is more 'head' on> > > that side). And those things were confirmed. The left side of her forehead > > > is flatter than the right and her right ear/eye/cheek are anterior to the> > > left. One side of her cheek/jaw is also shifted, but I can't recall which> > > side. I want to say that it's the right, but I'm not sure. > > > > > > And for those reasons, they think that she absolutely needs a band. Clearly,> > > it's a cosmetic issue... I don't really want her to be insecure about having> > > her hair up because one ear is closer to her face than the other.. or > > > because one eye is smaller. It would also make things like getting glasses> > > that fit complicated. And it could absolutely cause jaw issues later... I've> > > had my fair share, including braces as an adult - so that's not something we > > > need. So I left the visit pretty certain that we would go ahead with it.> > > > > > But I still have some hestiations. I talked to her SLP (speech/feeding> > > therapist) about it this morning and found out that she had Torticollis as a > > > child, including surgery in the first grade to loosen the muscle! I had no> > > idea! She said that she still has issues with finding glasses that fit on> > > her ears and nose correctly, but that otherwise it doesn't bother her much - > > > and she looks 'normal' to me. She seemed to agree with my outlook (that I> > > stole from someone here! thank you, it's helped tremendously!) that we will> > > never regret doing it, but may regret not doing it. I also asked her OT what > > > she thought, and she seemed to agree also... though she gasped at the> > > pricetag (and insisted that there were cheaper options) and she also said> > > that usually kids that they see there with helmets have much more severe > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be> > > too concerned about her flatness. It's the facial shift that really concerns> > > me. She recommended that I ask her PT what she thought.. since she knows > > > much more about Torticollis, but her PT is usually all rainbows and sunshine> > > and writes most things off because they *could* be worse , so I don't think> > > her opinion will really alter mine. > > > > > > So while I was pleased with our appointment for the most part, I still have> > > some concerns/questions. If anyone has any insight, please share!> > > > > > 1) What ARE the other options, outside of CT? I know that there are other > > > companies, but after researching it a bit - it seemed like CT was much more> > > reputable and had better success. Are the other companies/types of bands> > > significantly cheaper? The price won't hold us back if she needs it (it's > > > $3k for us since we're military), but if it's like 'buying the name brand> > > even though the store brand works fine', I'd like to know. I don't think> > > that's the case, but I want to ask anyway! Cranial bands are a Tricare > > > exclusion, so I'm not sure it's worth the trouble in appealing them a> > > hundred times.> > > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > > > developmental delays, she is not yet sitting and probably won't be anytime> > > soon. She does spend a lot of time on her tummy, but the> > > Tort/Plagio/Asymmetry has definitely worsened even with that. > > > > > > 3) If she does a band and her facial asymmetry corrects, how common is it to> > > have it occur again after removing the band?> > > > > > 4) Could someone help me understand her measurements? I can't remember which > > > mean what!> > > > > > Traditional Cranial Vault Asymmetry: 5> > > fzR-euL: 138> > > fzL-euR: 133> > > > > > Cranial Vault Asymmetry: 8 > > > fzR-OcpL: 148> > > fzL-OcpR: 140> > > > > > Skull Base Asymmetry: 10> > > sn-tL: 83> > > sn:tR: 73> > > > > > Also, when you have your DSi photos done, do you usually notice that the > > > measurements are the same as the manual ones, better, or worse?> > > > > > I think that's it. Other than the inevitable, 'if you were in my shoes, what> > > would you do?' question! I am uploading her scans under M shortly. > > > > > > Kim> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 I really appreciate all of the information. I'll have to talk with my husband about it. How far is CT from you? Kim On Thu, Apr 16, 2009 at 6:18 PM, <mommy2jaylina@...> wrote: Hey! You will always stay over night. Our appointments are always on Mondays. So our flights are always Sunday morning. We stay over night, go to our 7 am appt at CT and meet the pilot at the airport at 10 am. We usually take a taxi, and when we do stay over night we stay at the Mc house. The pilots never fly out of major airports, they always fly from the smaller ones which, can be semi near the normal airports. The planes are small usuallly 4 seats, so taking a stroller is a no. Which really sucks. But, you do what you have to do. My son is so used to it by now. All the pilots are so nice! Angel flights has been great Sent via BlackBerry from T-Mobile From: K S Date: Thu, 16 Apr 2009 17:17:33 -0500<Plagiocephaly >Subject: Re: Re: Mia's Evaluation/Pictures Do you mind sharing how well it works for you? When you get there, do you take a taxi or rent a car? Is it easy to get flights back or do you often have to stay overnight? Do the flights depart/arrive near you or at a major airport? Kim On Thu, Apr 16, 2009 at 4:49 PM, <mommy2jaylina@...> wrote: I use angel flights weekly Sent via BlackBerry from T-Mobile From: " " Date: Thu, 16 Apr 2009 19:42:37 -0000<Plagiocephaly >Subject: Re: Mia's Evaluation/Pictures Sorry, I hadn't even looked at her photostudy when I first responded, I was simply going by the numbers you posted in your message. What stuck out to me there, was that the highest number was in her skull base, and " typically " the cranial vault numbers will be higher or equal to the skull base, not less than, so that jumped out to me there. The skull base asym is the difference of each side measured nose to ear (nose to right ear minus nose to left ear, or vice versa). So in her photostudy, the one where she's lying down, looking up her nose, and the pen marks are showing the misalignment in her ears...that's the 10mm of asym in her skull base. As the ears shift into alignment, that number will go down. At least two people on the board have used Angel Flights, so hopefully they'll tell you their experiences. Hopefully you'll end up in San Diego and it won't be an issue!Good luck!Jake-2.5 (DOCBand Grad 9/08) Jordan-5 > > >> > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg> > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday> > > morning in Atlanta (~1 hour each way), so there was already a lot of > > > traveling going on... and after she finished yesterday morning, we headed> > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then> > > headed home. We got back really late and then I had to scramble around all > > > morning getting 'the sister' to preschool and Mia to back to back therapy. I> > > need a long NAP!> > > > > > Anyway, everything went fine at CT. It was actually really nice to SEE what > > > I have been THINKING that I was seeing in photos and measurements. It makes> > > me feel like I'm not just crazy. Mia really made them earn their keep,> > > though. She has some sensory issues and really doesn't like being touched, > > > especially her head.. so she screamed hysterically the entire time and all> > > they were doing was trying to get photos and measurements! It made things> > > very challenging. I was shocked that they even got the photos that they did > > > because she barely stopped screaming the entire consult, and we were there> > > for close to 2 hours! I was also worried that because she was so upset, the> > > pictures wouldn't show her 'true' Torticollis, but they did for the most > > > part. It's a bit worse in real life, but they saw that 'in person' - so it> > > really doesn't matter.> > > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > > > concerned and I can't say that we would band. In fact, I can almost> > > certainly say that we wouldn't. She will have hair that will mostly cover> > > it, and it isn't severe by any means. It's to the right, so it's difficult > > > to get good photos of, and it's a bit worse than it appears - but not by> > > much. They said that the flatness straight across is mostly because of her> > > fontanelle that is still open, and that it's something we should watch. > > > > > > But. And there's always a 'but', right? Because of the> > > Torticollis/Plagiocephaly, she has some significant asymmetry going on..> > > which is what I was really concerned about going in. I had definitely > > > noticed that her right ear seemed shifted forward.. but I had a hard time> > > differentiating what was 'real' and what was her mommy over-analyzing> > > things. So it was really comforting to have someone else see it, too. So my > > > biggest concerns were her right ear being more forward than the left and her> > > left eye seeming a bit smaller/weighed down (because there is more 'head' on> > > that side). And those things were confirmed. The left side of her forehead > > > is flatter than the right and her right ear/eye/cheek are anterior to the> > > left. One side of her cheek/jaw is also shifted, but I can't recall which> > > side. I want to say that it's the right, but I'm not sure. > > > > > > And for those reasons, they think that she absolutely needs a band. Clearly,> > > it's a cosmetic issue... I don't really want her to be insecure about having> > > her hair up because one ear is closer to her face than the other.. or > > > because one eye is smaller. It would also make things like getting glasses> > > that fit complicated. And it could absolutely cause jaw issues later... I've> > > had my fair share, including braces as an adult - so that's not something we > > > need. So I left the visit pretty certain that we would go ahead with it.> > > > > > But I still have some hestiations. I talked to her SLP (speech/feeding> > > therapist) about it this morning and found out that she had Torticollis as a > > > child, including surgery in the first grade to loosen the muscle! I had no> > > idea! She said that she still has issues with finding glasses that fit on> > > her ears and nose correctly, but that otherwise it doesn't bother her much - > > > and she looks 'normal' to me. She seemed to agree with my outlook (that I> > > stole from someone here! thank you, it's helped tremendously!) that we will> > > never regret doing it, but may regret not doing it. I also asked her OT what > > > she thought, and she seemed to agree also... though she gasped at the> > > pricetag (and insisted that there were cheaper options) and she also said> > > that usually kids that they see there with helmets have much more severe > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be> > > too concerned about her flatness. It's the facial shift that really concerns> > > me. She recommended that I ask her PT what she thought.. since she knows > > > much more about Torticollis, but her PT is usually all rainbows and sunshine> > > and writes most things off because they *could* be worse , so I don't think> > > her opinion will really alter mine. > > > > > > So while I was pleased with our appointment for the most part, I still have> > > some concerns/questions. If anyone has any insight, please share!> > > > > > 1) What ARE the other options, outside of CT? I know that there are other > > > companies, but after researching it a bit - it seemed like CT was much more> > > reputable and had better success. Are the other companies/types of bands> > > significantly cheaper? The price won't hold us back if she needs it (it's > > > $3k for us since we're military), but if it's like 'buying the name brand> > > even though the store brand works fine', I'd like to know. I don't think> > > that's the case, but I want to ask anyway! Cranial bands are a Tricare > > > exclusion, so I'm not sure it's worth the trouble in appealing them a> > > hundred times.> > > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > > > developmental delays, she is not yet sitting and probably won't be anytime> > > soon. She does spend a lot of time on her tummy, but the> > > Tort/Plagio/Asymmetry has definitely worsened even with that. > > > > > > 3) If she does a band and her facial asymmetry corrects, how common is it to> > > have it occur again after removing the band?> > > > > > 4) Could someone help me understand her measurements? I can't remember which > > > mean what!> > > > > > Traditional Cranial Vault Asymmetry: 5> > > fzR-euL: 138> > > fzL-euR: 133> > > > > > Cranial Vault Asymmetry: 8 > > > fzR-OcpL: 148> > > fzL-OcpR: 140> > > > > > Skull Base Asymmetry: 10> > > sn-tL: 83> > > sn:tR: 73> > > > > > Also, when you have your DSi photos done, do you usually notice that the > > > measurements are the same as the manual ones, better, or worse?> > > > > > I think that's it. Other than the inevitable, 'if you were in my shoes, what> > > would you do?' question! I am uploading her scans under M shortly. > > > > > > Kim> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 I live in.Colorado and CT is in Arizona so its a few states away! Its crazy. But we would not be able to afford all this travel if it weren't for angel flightsSent via BlackBerry from T-MobileFrom: K S Date: Thu, 16 Apr 2009 20:36:58 -0500<Plagiocephaly >Subject: Re: Re: Mia's Evaluation/Pictures I really appreciate all of the information. I'll have to talk with my husband about it. How far is CT from you? KimOn Thu, Apr 16, 2009 at 6:18 PM, <mommy2jaylinaaol> wrote:Hey! You will always stay over night. Our appointments are always on Mondays. So our flights are always Sunday morning. We stay over night, go to our 7 am appt at CT and meet the pilot at the airport at 10 am. We usually take a taxi, and when we do stay over night we stay at the Mc house. The pilots never fly out of major airports, they always fly from the smaller ones which, can be semi near the normal airports. The planes are small usuallly 4 seats, so taking a stroller is a no. Which really sucks. But, you do what you have to do. My son is so used to it by now. All the pilots are so nice! Angel flights has been great Sent via BlackBerry from T-MobileFrom: K S Date: Thu, 16 Apr 2009 17:17:33 -0500<Plagiocephaly >Subject: Re: Re: Mia's Evaluation/Pictures Do you mind sharing how well it works for you? When you get there, do you take a taxi or rent a car? Is it easy to get flights back or do you often have to stay overnight? Do the flights depart/arrive near you or at a major airport? KimOn Thu, Apr 16, 2009 at 4:49 PM, <mommy2jaylinaaol> wrote:I use angel flights weekly Sent via BlackBerry from T-MobileFrom: " " Date: Thu, 16 Apr 2009 19:42:37 -0000<Plagiocephaly >Subject: Re: Mia's Evaluation/Pictures Sorry, I hadn't even looked at her photostudy when I first responded, I was simply going by the numbers you posted in your message. What stuck out to me there, was that the highest number was in her skull base, and " typically " the cranial vault numbers will be higher or equal to the skull base, not less than, so that jumped out to me there.The skull base asym is the difference of each side measured nose to ear (nose to right ear minus nose to left ear, or vice versa). So in her photostudy, the one where she's lying down, looking up her nose, and the pen marks are showing the misalignment in her ears...that's the 10mm of asym in her skull base. As the ears shift into alignment, that number will go down. At least two people on the board have used Angel Flights, so hopefully they'll tell you their experiences. Hopefully you'll end up in San Diego and it won't be an issue!Good luck!Jake-2.5 (DOCBand Grad 9/08) Jordan-5 > > >> > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg> > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday> > > morning in Atlanta (~1 hour each way), so there was already a lot of > > > traveling going on... and after she finished yesterday morning, we headed> > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then> > > headed home. We got back really late and then I had to scramble around all > > > morning getting 'the sister' to preschool and Mia to back to back therapy. I> > > need a long NAP!> > > > > > Anyway, everything went fine at CT. It was actually really nice to SEE what > > > I have been THINKING that I was seeing in photos and measurements. It makes> > > me feel like I'm not just crazy. Mia really made them earn their keep,> > > though. She has some sensory issues and really doesn't like being touched, > > > especially her head.. so she screamed hysterically the entire time and all> > > they were doing was trying to get photos and measurements! It made things> > > very challenging. I was shocked that they even got the photos that they did > > > because she barely stopped screaming the entire consult, and we were there> > > for close to 2 hours! I was also worried that because she was so upset, the> > > pictures wouldn't show her 'true' Torticollis, but they did for the most > > > part. It's a bit worse in real life, but they saw that 'in person' - so it> > > really doesn't matter.> > > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > > > concerned and I can't say that we would band. In fact, I can almost> > > certainly say that we wouldn't. She will have hair that will mostly cover> > > it, and it isn't severe by any means. It's to the right, so it's difficult > > > to get good photos of, and it's a bit worse than it appears - but not by> > > much. They said that the flatness straight across is mostly because of her> > > fontanelle that is still open, and that it's something we should watch. > > > > > > But. And there's always a 'but', right? Because of the> > > Torticollis/Plagiocephaly, she has some significant asymmetry going on..> > > which is what I was really concerned about going in. I had definitely > > > noticed that her right ear seemed shifted forward.. but I had a hard time> > > differentiating what was 'real' and what was her mommy over-analyzing> > > things. So it was really comforting to have someone else see it, too. So my > > > biggest concerns were her right ear being more forward than the left and her> > > left eye seeming a bit smaller/weighed down (because there is more 'head' on> > > that side). And those things were confirmed. The left side of her forehead > > > is flatter than the right and her right ear/eye/cheek are anterior to the> > > left. One side of her cheek/jaw is also shifted, but I can't recall which> > > side. I want to say that it's the right, but I'm not sure. > > > > > > And for those reasons, they think that she absolutely needs a band. Clearly,> > > it's a cosmetic issue... I don't really want her to be insecure about having> > > her hair up because one ear is closer to her face than the other.. or > > > because one eye is smaller. It would also make things like getting glasses> > > that fit complicated. And it could absolutely cause jaw issues later... I've> > > had my fair share, including braces as an adult - so that's not something we > > > need. So I left the visit pretty certain that we would go ahead with it.> > > > > > But I still have some hestiations. I talked to her SLP (speech/feeding> > > therapist) about it this morning and found out that she had Torticollis as a > > > child, including surgery in the first grade to loosen the muscle! I had no> > > idea! She said that she still has issues with finding glasses that fit on> > > her ears and nose correctly, but that otherwise it doesn't bother her much - > > > and she looks 'normal' to me. She seemed to agree with my outlook (that I> > > stole from someone here! thank you, it's helped tremendously!) that we will> > > never regret doing it, but may regret not doing it. I also asked her OT what > > > she thought, and she seemed to agree also... though she gasped at the> > > pricetag (and insisted that there were cheaper options) and she also said> > > that usually kids that they see there with helmets have much more severe > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be> > > too concerned about her flatness. It's the facial shift that really concerns> > > me. She recommended that I ask her PT what she thought.. since she knows > > > much more about Torticollis, but her PT is usually all rainbows and sunshine> > > and writes most things off because they *could* be worse , so I don't think> > > her opinion will really alter mine. > > > > > > So while I was pleased with our appointment for the most part, I still have> > > some concerns/questions. If anyone has any insight, please share!> > > > > > 1) What ARE the other options, outside of CT? I know that there are other > > > companies, but after researching it a bit - it seemed like CT was much more> > > reputable and had better success. Are the other companies/types of bands> > > significantly cheaper? The price won't hold us back if she needs it (it's > > > $3k for us since we're military), but if it's like 'buying the name brand> > > even though the store brand works fine', I'd like to know. I don't think> > > that's the case, but I want to ask anyway! Cranial bands are a Tricare > > > exclusion, so I'm not sure it's worth the trouble in appealing them a> > > hundred times.> > > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > > > developmental delays, she is not yet sitting and probably won't be anytime> > > soon. She does spend a lot of time on her tummy, but the> > > Tort/Plagio/Asymmetry has definitely worsened even with that. > > > > > > 3) If she does a band and her facial asymmetry corrects, how common is it to> > > have it occur again after removing the band?> > > > > > 4) Could someone help me understand her measurements? I can't remember which > > > mean what!> > > > > > Traditional Cranial Vault Asymmetry: 5> > > fzR-euL: 138> > > fzL-euR: 133> > > > > > Cranial Vault Asymmetry: 8 > > > fzR-OcpL: 148> > > fzL-OcpR: 140> > > > > > Skull Base Asymmetry: 10> > > sn-tL: 83> > > sn:tR: 73> > > > > > Also, when you have your DSi photos done, do you usually notice that the > > > measurements are the same as the manual ones, better, or worse?> > > > > > I think that's it. Other than the inevitable, 'if you were in my shoes, what> > > would you do?' question! I am uploading her scans under M shortly. > > > > > > Kim> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 Hello Kim:We are one of the families who used Angel Flight. Our trip was 350 miles by car, so about 6+ hrs each way. Angel Flight would take us there in about 2 to 2 1/2 hrs, all depending on winds and speed of particular aircraft. Our pilots would wait for us at the airport to take us back that same day. We always rented a car to get to the clinic, but found out (on our very last flight, alas) that there are also " Earth Angels " who will take care of ground transportation. There are lots of wonderful people out there!!! Maybe one of the members of this group would volunteer his/her services for your transport. Make sure you take a carseat (a smallish one, I don't think most of the aircraft would accomodate anything like a Brittax). There seems to be no law for child restraint in a small aircraft, but an active baby can be hard to contain and you don't want to distract the pilot. Best of luck to you and your precious little one,HeidrunProud Grandma to Aiden (graduated August 08) and Abbey On Fri, Apr 17, 2009 at 6:20 AM, <nwilkens2275@...> wrote: Well, shucks...Glad I could help! Jake-2.5 (DOCBand Grad 9/08) Jordan-5 > > > > > > > > > > We had our evaluation at CT in Charlotte yesterday. It has been a > > longggg > > > > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to > > Wednesday > > > > > morning in Atlanta (~1 hour each way), so there was already a lot of > > > > > traveling going on... and after she finished yesterday morning, we > > headed > > > > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and > > then > > > > > headed home. We got back really late and then I had to scramble > > around all > > > > > morning getting 'the sister' to preschool and Mia to back to back > > therapy. I > > > > > need a long NAP! > > > > > > > > > > Anyway, everything went fine at CT. It was actually really nice to > > SEE what > > > > > I have been THINKING that I was seeing in photos and measurements. It > > makes > > > > > me feel like I'm not just crazy. Mia really made them earn their > > keep, > > > > > though. She has some sensory issues and really doesn't like being > > touched, > > > > > especially her head.. so she screamed hysterically the entire time > > and all > > > > > they were doing was trying to get photos and measurements! It made > > things > > > > > very challenging. I was shocked that they even got the photos that > > they did > > > > > because she barely stopped screaming the entire consult, and we were > > there > > > > > for close to 2 hours! I was also worried that because she was so > > upset, the > > > > > pictures wouldn't show her 'true' Torticollis, but they did for the > > most > > > > > part. It's a bit worse in real life, but they saw that 'in person' - > > so it > > > > > really doesn't matter. > > > > > > > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't > > be so > > > > > concerned and I can't say that we would band. In fact, I can almost > > > > > certainly say that we wouldn't. She will have hair that will mostly > > cover > > > > > it, and it isn't severe by any means. It's to the right, so it's > > difficult > > > > > to get good photos of, and it's a bit worse than it appears - but not > > by > > > > > much. They said that the flatness straight across is mostly because > > of her > > > > > fontanelle that is still open, and that it's something we should > > watch. > > > > > > > > > > But. And there's always a 'but', right? Because of the > > > > > Torticollis/Plagiocephaly, she has some significant asymmetry going > > on.. > > > > > which is what I was really concerned about going in. I had definitely > > > > > noticed that her right ear seemed shifted forward.. but I had a hard > > time > > > > > differentiating what was 'real' and what was her mommy over-analyzing > > > > > things. So it was really comforting to have someone else see it, too. > > So my > > > > > biggest concerns were her right ear being more forward than the left > > and her > > > > > left eye seeming a bit smaller/weighed down (because there is more > > 'head' on > > > > > that side). And those things were confirmed. The left side of her > > forehead > > > > > is flatter than the right and her right ear/eye/cheek are anterior to > > the > > > > > left. One side of her cheek/jaw is also shifted, but I can't recall > > which > > > > > side. I want to say that it's the right, but I'm not sure. > > > > > > > > > > And for those reasons, they think that she absolutely needs a band. > > Clearly, > > > > > it's a cosmetic issue... I don't really want her to be insecure about > > having > > > > > her hair up because one ear is closer to her face than the other.. or > > > > > because one eye is smaller. It would also make things like getting > > glasses > > > > > that fit complicated. And it could absolutely cause jaw issues > > later... I've > > > > > had my fair share, including braces as an adult - so that's not > > something we > > > > > need. So I left the visit pretty certain that we would go ahead with > > it. > > > > > > > > > > But I still have some hestiations. I talked to her SLP > > (speech/feeding > > > > > therapist) about it this morning and found out that she had > > Torticollis as a > > > > > child, including surgery in the first grade to loosen the muscle! I > > had no > > > > > idea! She said that she still has issues with finding glasses that > > fit on > > > > > her ears and nose correctly, but that otherwise it doesn't bother her > > much - > > > > > and she looks 'normal' to me. She seemed to agree with my outlook > > (that I > > > > > stole from someone here! thank you, it's helped tremendously!) that > > we will > > > > > never regret doing it, but may regret not doing it. I also asked her > > OT what > > > > > she thought, and she seemed to agree also... though she gasped at the > > > > > pricetag (and insisted that there were cheaper options) and she also > > said > > > > > that usually kids that they see there with helmets have much more > > severe > > > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I > > wouldn't be > > > > > too concerned about her flatness. It's the facial shift that really > > concerns > > > > > me. She recommended that I ask her PT what she thought.. since she > > knows > > > > > much more about Torticollis, but her PT is usually all rainbows and > > sunshine > > > > > and writes most things off because they *could* be worse , so I don't > > think > > > > > her opinion will really alter mine. > > > > > > > > > > So while I was pleased with our appointment for the most part, I > > still have > > > > > some concerns/questions. If anyone has any insight, please share! > > > > > > > > > > 1) What ARE the other options, outside of CT? I know that there are > > other > > > > > companies, but after researching it a bit - it seemed like CT was > > much more > > > > > reputable and had better success. Are the other companies/types of > > bands > > > > > significantly cheaper? The price won't hold us back if she needs it > > (it's > > > > > $3k for us since we're military), but if it's like 'buying the name > > brand > > > > > even though the store brand works fine', I'd like to know. I don't > > think > > > > > that's the case, but I want to ask anyway! Cranial bands are a > > Tricare > > > > > exclusion, so I'm not sure it's worth the trouble in appealing them a > > > > > hundred times. > > > > > > > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia > > has > > > > > developmental delays, she is not yet sitting and probably won't be > > anytime > > > > > soon. She does spend a lot of time on her tummy, but the > > > > > Tort/Plagio/Asymmetry has definitely worsened even with that. > > > > > > > > > > 3) If she does a band and her facial asymmetry corrects, how common > > is it to > > > > > have it occur again after removing the band? > > > > > > > > > > 4) Could someone help me understand her measurements? I can't > > remember which > > > > > mean what! > > > > > > > > > > Traditional Cranial Vault Asymmetry: 5 > > > > > fzR-euL: 138 > > > > > fzL-euR: 133 > > > > > > > > > > Cranial Vault Asymmetry: 8 > > > > > fzR-OcpL: 148 > > > > > fzL-OcpR: 140 > > > > > > > > > > Skull Base Asymmetry: 10 > > > > > sn-tL: 83 > > > > > sn:tR: 73 > > > > > > > > > > Also, when you have your DSi photos done, do you usually notice that > > the > > > > > measurements are the same as the manual ones, better, or worse? > > > > > > > > > > I think that's it. Other than the inevitable, 'if you were in my > > shoes, what > > > > > would you do?' question! I am uploading her scans under M shortly. > > > > > > > > > > Kim > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 Thanks so much for sharing! It's 198 miles one way for us, so about 3 1/2 hours. I'm trying to decide if Angel Flight would be worth it for us or if it would make things more difficult. I think that we'll probably just end up driving since my husband won't always be able to take off from work for full day trips like that (Navy). I have another daughter (4) who I will need to take with me, and I'm assuming that you can't do that with Angel Flight - though I'm not sure. I had never heard of Earth Angels, how neat is that! Mia has her DSi scheduled for next Friday, so it looks like many trips in our future! Kim On Fri, Apr 17, 2009 at 10:28 AM, Heidrun Benbrook <hrbenbrook@...> wrote: Hello Kim:We are one of the families who used Angel Flight. Our trip was 350 miles by car, so about 6+ hrs each way. Angel Flight would take us there in about 2 to 2 1/2 hrs, all depending on winds and speed of particular aircraft. Our pilots would wait for us at the airport to take us back that same day. We always rented a car to get to the clinic, but found out (on our very last flight, alas) that there are also " Earth Angels " who will take care of ground transportation. There are lots of wonderful people out there!!! Maybe one of the members of this group would volunteer his/her services for your transport. Make sure you take a carseat (a smallish one, I don't think most of the aircraft would accomodate anything like a Brittax). There seems to be no law for child restraint in a small aircraft, but an active baby can be hard to contain and you don't want to distract the pilot. Best of luck to you and your precious little one,HeidrunProud Grandma to Aiden (graduated August 08) and Abbey On Fri, Apr 17, 2009 at 6:20 AM, <nwilkens2275@...> wrote: Well, shucks...Glad I could help! Jake-2.5 (DOCBand Grad 9/08)Jordan-5> > > > >> > > > > We had our evaluation at CT in Charlotte yesterday. It has been a> > longggg> > > > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to > > Wednesday> > > > > morning in Atlanta (~1 hour each way), so there was already a lot of> > > > > traveling going on... and after she finished yesterday morning, we> > headed > > > > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and> > then> > > > > headed home. We got back really late and then I had to scramble> > around all > > > > > morning getting 'the sister' to preschool and Mia to back to back> > therapy. I> > > > > need a long NAP!> > > > >> > > > > Anyway, everything went fine at CT. It was actually really nice to > > SEE what> > > > > I have been THINKING that I was seeing in photos and measurements. It> > makes> > > > > me feel like I'm not just crazy. Mia really made them earn their > > keep,> > > > > though. She has some sensory issues and really doesn't like being> > touched,> > > > > especially her head.. so she screamed hysterically the entire time > > and all> > > > > they were doing was trying to get photos and measurements! It made> > things> > > > > very challenging. I was shocked that they even got the photos that > > they did> > > > > because she barely stopped screaming the entire consult, and we were> > there> > > > > for close to 2 hours! I was also worried that because she was so > > upset, the> > > > > pictures wouldn't show her 'true' Torticollis, but they did for the> > most> > > > > part. It's a bit worse in real life, but they saw that 'in person' - > > so it> > > > > really doesn't matter.> > > > >> > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't> > be so > > > > > concerned and I can't say that we would band. In fact, I can almost> > > > > certainly say that we wouldn't. She will have hair that will mostly> > cover> > > > > it, and it isn't severe by any means. It's to the right, so it's > > difficult> > > > > to get good photos of, and it's a bit worse than it appears - but not> > by> > > > > much. They said that the flatness straight across is mostly because > > of her> > > > > fontanelle that is still open, and that it's something we should> > watch.> > > > >> > > > > But. And there's always a 'but', right? Because of the > > > > > Torticollis/Plagiocephaly, she has some significant asymmetry going> > on..> > > > > which is what I was really concerned about going in. I had definitely> > > > > noticed that her right ear seemed shifted forward.. but I had a hard > > time> > > > > differentiating what was 'real' and what was her mommy over-analyzing> > > > > things. So it was really comforting to have someone else see it, too. > > So my> > > > > biggest concerns were her right ear being more forward than the left> > and her> > > > > left eye seeming a bit smaller/weighed down (because there is more > > 'head' on> > > > > that side). And those things were confirmed. The left side of her> > forehead> > > > > is flatter than the right and her right ear/eye/cheek are anterior to > > the> > > > > left. One side of her cheek/jaw is also shifted, but I can't recall> > which> > > > > side. I want to say that it's the right, but I'm not sure. > > > > >> > > > > And for those reasons, they think that she absolutely needs a band.> > Clearly,> > > > > it's a cosmetic issue... I don't really want her to be insecure about > > having> > > > > her hair up because one ear is closer to her face than the other.. or> > > > > because one eye is smaller. It would also make things like getting> > glasses > > > > > that fit complicated. And it could absolutely cause jaw issues> > later... I've> > > > > had my fair share, including braces as an adult - so that's not> > something we > > > > > need. So I left the visit pretty certain that we would go ahead with> > it.> > > > >> > > > > But I still have some hestiations. I talked to her SLP > > (speech/feeding> > > > > therapist) about it this morning and found out that she had> > Torticollis as a> > > > > child, including surgery in the first grade to loosen the muscle! I > > had no> > > > > idea! She said that she still has issues with finding glasses that> > fit on> > > > > her ears and nose correctly, but that otherwise it doesn't bother her > > much -> > > > > and she looks 'normal' to me. She seemed to agree with my outlook> > (that I> > > > > stole from someone here! thank you, it's helped tremendously!) that > > we will> > > > > never regret doing it, but may regret not doing it. I also asked her> > OT what> > > > > she thought, and she seemed to agree also... though she gasped at the > > > > > pricetag (and insisted that there were cheaper options) and she also> > said> > > > > that usually kids that they see there with helmets have much more> > severe > > > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I> > wouldn't be> > > > > too concerned about her flatness. It's the facial shift that really > > concerns> > > > > me. She recommended that I ask her PT what she thought.. since she> > knows> > > > > much more about Torticollis, but her PT is usually all rainbows and > > sunshine> > > > > and writes most things off because they *could* be worse , so I don't> > think> > > > > her opinion will really alter mine.> > > > > > > > > > So while I was pleased with our appointment for the most part, I> > still have> > > > > some concerns/questions. If anyone has any insight, please share!> > > > > > > > > > 1) What ARE the other options, outside of CT? I know that there are> > other> > > > > companies, but after researching it a bit - it seemed like CT was> > much more > > > > > reputable and had better success. Are the other companies/types of> > bands> > > > > significantly cheaper? The price won't hold us back if she needs it> > (it's > > > > > $3k for us since we're military), but if it's like 'buying the name> > brand> > > > > even though the store brand works fine', I'd like to know. I don't > > think> > > > > that's the case, but I want to ask anyway! Cranial bands are a> > Tricare> > > > > exclusion, so I'm not sure it's worth the trouble in appealing them a > > > > > hundred times.> > > > >> > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia> > has> > > > > developmental delays, she is not yet sitting and probably won't be > > anytime> > > > > soon. She does spend a lot of time on her tummy, but the> > > > > Tort/Plagio/Asymmetry has definitely worsened even with that.> > > > > > > > > > 3) If she does a band and her facial asymmetry corrects, how common> > is it to> > > > > have it occur again after removing the band?> > > > >> > > > > 4) Could someone help me understand her measurements? I can't > > remember which> > > > > mean what!> > > > >> > > > > Traditional Cranial Vault Asymmetry: 5> > > > > fzR-euL: 138> > > > > fzL-euR: 133 > > > > >> > > > > Cranial Vault Asymmetry: 8> > > > > fzR-OcpL: 148> > > > > fzL-OcpR: 140> > > > >> > > > > Skull Base Asymmetry: 10 > > > > > sn-tL: 83> > > > > sn:tR: 73> > > > >> > > > > Also, when you have your DSi photos done, do you usually notice that> > the> > > > > measurements are the same as the manual ones, better, or worse? > > > > >> > > > > I think that's it. Other than the inevitable, 'if you were in my> > shoes, what> > > > > would you do?' question! I am uploading her scans under M shortly. > > > > >> > > > > Kim> > > > >> > > >> > >> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 My four year old goes. And it would not be necessary for your husband to go, its nice to have company, but I'd rather fly alone than drive lol. Good luck with your choiceSent via BlackBerry from T-MobileFrom: K S Date: Fri, 17 Apr 2009 15:39:13 -0500<Plagiocephaly >Subject: Re: Re: Mia's Evaluation/Pictures Thanks so much for sharing! It's 198 miles one way for us, so about 3 1/2 hours. I'm trying to decide if Angel Flight would be worth it for us or if it would make things more difficult. I think that we'll probably just end up driving since my husband won't always be able to take off from work for full day trips like that (Navy). I have another daughter (4) who I will need to take with me, and I'm assuming that you can't do that with Angel Flight - though I'm not sure. I had never heard of Earth Angels, how neat is that! Mia has her DSi scheduled for next Friday, so it looks like many trips in our future! KimOn Fri, Apr 17, 2009 at 10:28 AM, Heidrun Benbrook <hrbenbrookgmail> wrote:Hello Kim:We are one of the families who used Angel Flight. Our trip was 350 miles by car, so about 6+ hrs each way. Angel Flight would take us there in about 2 to 2 1/2 hrs, all depending on winds and speed of particular aircraft. Our pilots would wait for us at the airport to take us back that same day. We always rented a car to get to the clinic, but found out (on our very last flight, alas) that there are also " Earth Angels " who will take care of ground transportation. There are lots of wonderful people out there!!! Maybe one of the members of this group would volunteer his/her services for your transport. Make sure you take a carseat (a smallish one, I don't think most of the aircraft would accomodate anything like a Brittax). There seems to be no law for child restraint in a small aircraft, but an active baby can be hard to contain and you don't want to distract the pilot. Best of luck to you and your precious little one,HeidrunProud Grandma to Aiden (graduated August 08) and Abbey On Fri, Apr 17, 2009 at 6:20 AM, <nwilkens2275 > wrote:Well, shucks...Glad I could help! :)Jake-2.5 (DOCBand Grad 9/08)Jordan-5> > > > >> > > > > We had our evaluation at CT in Charlotte yesterday. It has been a> > longggg> > > > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to > > Wednesday> > > > > morning in Atlanta (~1 hour each way), so there was already a lot of> > > > > traveling going on... and after she finished yesterday morning, we> > headed > > > > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and> > then> > > > > headed home. We got back really late and then I had to scramble> > around all > > > > > morning getting 'the sister' to preschool and Mia to back to back> > therapy. I> > > > > need a long NAP!> > > > >> > > > > Anyway, everything went fine at CT. It was actually really nice to > > SEE what> > > > > I have been THINKING that I was seeing in photos and measurements. It> > makes> > > > > me feel like I'm not just crazy. Mia really made them earn their > > keep,> > > > > though. She has some sensory issues and really doesn't like being> > touched,> > > > > especially her head.. so she screamed hysterically the entire time > > and all> > > > > they were doing was trying to get photos and measurements! It made> > things> > > > > very challenging. I was shocked that they even got the photos that > > they did> > > > > because she barely stopped screaming the entire consult, and we were> > there> > > > > for close to 2 hours! I was also worried that because she was so > > upset, the> > > > > pictures wouldn't show her 'true' Torticollis, but they did for the> > most> > > > > part. It's a bit worse in real life, but they saw that 'in person' - > > so it> > > > > really doesn't matter.> > > > >> > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't> > be so > > > > > concerned and I can't say that we would band. In fact, I can almost> > > > > certainly say that we wouldn't. She will have hair that will mostly> > cover> > > > > it, and it isn't severe by any means. It's to the right, so it's > > difficult> > > > > to get good photos of, and it's a bit worse than it appears - but not> > by> > > > > much. They said that the flatness straight across is mostly because > > of her> > > > > fontanelle that is still open, and that it's something we should> > watch.> > > > >> > > > > But. And there's always a 'but', right? Because of the > > > > > Torticollis/Plagiocephaly, she has some significant asymmetry going> > on..> > > > > which is what I was really concerned about going in. I had definitely> > > > > noticed that her right ear seemed shifted forward.. but I had a hard > > time> > > > > differentiating what was 'real' and what was her mommy over-analyzing> > > > > things. So it was really comforting to have someone else see it, too. > > So my> > > > > biggest concerns were her right ear being more forward than the left> > and her> > > > > left eye seeming a bit smaller/weighed down (because there is more > > 'head' on> > > > > that side). And those things were confirmed. The left side of her> > forehead> > > > > is flatter than the right and her right ear/eye/cheek are anterior to > > the> > > > > left. One side of her cheek/jaw is also shifted, but I can't recall> > which> > > > > side. I want to say that it's the right, but I'm not sure. > > > > >> > > > > And for those reasons, they think that she absolutely needs a band.> > Clearly,> > > > > it's a cosmetic issue... I don't really want her to be insecure about > > having> > > > > her hair up because one ear is closer to her face than the other.. or> > > > > because one eye is smaller. It would also make things like getting> > glasses > > > > > that fit complicated. And it could absolutely cause jaw issues> > later... I've> > > > > had my fair share, including braces as an adult - so that's not> > something we > > > > > need. So I left the visit pretty certain that we would go ahead with> > it.> > > > >> > > > > But I still have some hestiations. I talked to her SLP > > (speech/feeding> > > > > therapist) about it this morning and found out that she had> > Torticollis as a> > > > > child, including surgery in the first grade to loosen the muscle! I > > had no> > > > > idea! She said that she still has issues with finding glasses that> > fit on> > > > > her ears and nose correctly, but that otherwise it doesn't bother her > > much -> > > > > and she looks 'normal' to me. She seemed to agree with my outlook> > (that I> > > > > stole from someone here! thank you, it's helped tremendously!) that > > we will> > > > > never regret doing it, but may regret not doing it. I also asked her> > OT what> > > > > she thought, and she seemed to agree also... though she gasped at the > > > > > pricetag (and insisted that there were cheaper options) and she also> > said> > > > > that usually kids that they see there with helmets have much more> > severe > > > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I> > wouldn't be> > > > > too concerned about her flatness. It's the facial shift that really > > concerns> > > > > me. She recommended that I ask her PT what she thought.. since she> > knows> > > > > much more about Torticollis, but her PT is usually all rainbows and > > sunshine> > > > > and writes most things off because they *could* be worse , so I don't> > think> > > > > her opinion will really alter mine.> > > > > > > > > > So while I was pleased with our appointment for the most part, I> > still have> > > > > some concerns/questions. If anyone has any insight, please share!> > > > > > > > > > 1) What ARE the other options, outside of CT? I know that there are> > other> > > > > companies, but after researching it a bit - it seemed like CT was> > much more > > > > > reputable and had better success. Are the other companies/types of> > bands> > > > > significantly cheaper? The price won't hold us back if she needs it> > (it's > > > > > $3k for us since we're military), but if it's like 'buying the name> > brand> > > > > even though the store brand works fine', I'd like to know. I don't > > think> > > > > that's the case, but I want to ask anyway! Cranial bands are a> > Tricare> > > > > exclusion, so I'm not sure it's worth the trouble in appealing them a > > > > > hundred times.> > > > >> > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia> > has> > > > > developmental delays, she is not yet sitting and probably won't be > > anytime> > > > > soon. She does spend a lot of time on her tummy, but the> > > > > Tort/Plagio/Asymmetry has definitely worsened even with that.> > > > > > > > > > 3) If she does a band and her facial asymmetry corrects, how common> > is it to> > > > > have it occur again after removing the band?> > > > >> > > > > 4) Could someone help me understand her measurements? I can't > > remember which> > > > > mean what!> > > > >> > > > > Traditional Cranial Vault Asymmetry: 5> > > > > fzR-euL: 138> > > > > fzL-euR: 133 > > > > >> > > > > Cranial Vault Asymmetry: 8> > > > > fzR-OcpL: 148> > > > > fzL-OcpR: 140> > > > >> > > > > Skull Base Asymmetry: 10 > > > > > sn-tL: 83> > > > > sn:tR: 73> > > > >> > > > > Also, when you have your DSi photos done, do you usually notice that> > the> > > > > measurements are the same as the manual ones, better, or worse? > > > > >> > > > > I think that's it. Other than the inevitable, 'if you were in my> > shoes, what> > > > > would you do?' question! I am uploading her scans under M shortly. > > > > >> > > > > Kim> > > > >> > > >> > >> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 Oh, really? I just assumed that they wouldn't allow siblings! How long does the approval process take? Kim On Fri, Apr 17, 2009 at 5:05 PM, <mommy2jaylina@...> wrote: My four year old goes. And it would not be necessary for your husband to go, its nice to have company, but I'd rather fly alone than drive lol. Good luck with your choice Sent via BlackBerry from T-Mobile From: K S Date: Fri, 17 Apr 2009 15:39:13 -0500 <Plagiocephaly >Subject: Re: Re: Mia's Evaluation/Pictures Thanks so much for sharing! It's 198 miles one way for us, so about 3 1/2 hours. I'm trying to decide if Angel Flight would be worth it for us or if it would make things more difficult. I think that we'll probably just end up driving since my husband won't always be able to take off from work for full day trips like that (Navy). I have another daughter (4) who I will need to take with me, and I'm assuming that you can't do that with Angel Flight - though I'm not sure. I had never heard of Earth Angels, how neat is that! Mia has her DSi scheduled for next Friday, so it looks like many trips in our future! Kim On Fri, Apr 17, 2009 at 10:28 AM, Heidrun Benbrook <hrbenbrook@...> wrote: Hello Kim:We are one of the families who used Angel Flight. Our trip was 350 miles by car, so about 6+ hrs each way. Angel Flight would take us there in about 2 to 2 1/2 hrs, all depending on winds and speed of particular aircraft. Our pilots would wait for us at the airport to take us back that same day. We always rented a car to get to the clinic, but found out (on our very last flight, alas) that there are also " Earth Angels " who will take care of ground transportation. There are lots of wonderful people out there!!! Maybe one of the members of this group would volunteer his/her services for your transport. Make sure you take a carseat (a smallish one, I don't think most of the aircraft would accomodate anything like a Brittax). There seems to be no law for child restraint in a small aircraft, but an active baby can be hard to contain and you don't want to distract the pilot. Best of luck to you and your precious little one,HeidrunProud Grandma to Aiden (graduated August 08) and Abbey On Fri, Apr 17, 2009 at 6:20 AM, <nwilkens2275@...> wrote: Well, shucks...Glad I could help! Jake-2.5 (DOCBand Grad 9/08)Jordan-5> > > > >> > > > > We had our evaluation at CT in Charlotte yesterday. It has been a> > longggg> > > > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to > > Wednesday> > > > > morning in Atlanta (~1 hour each way), so there was already a lot of> > > > > traveling going on... and after she finished yesterday morning, we> > headed > > > > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and> > then> > > > > headed home. We got back really late and then I had to scramble> > around all > > > > > morning getting 'the sister' to preschool and Mia to back to back> > therapy. I> > > > > need a long NAP!> > > > >> > > > > Anyway, everything went fine at CT. It was actually really nice to > > SEE what> > > > > I have been THINKING that I was seeing in photos and measurements. It> > makes> > > > > me feel like I'm not just crazy. Mia really made them earn their > > keep,> > > > > though. She has some sensory issues and really doesn't like being> > touched,> > > > > especially her head.. so she screamed hysterically the entire time > > and all> > > > > they were doing was trying to get photos and measurements! It made> > things> > > > > very challenging. I was shocked that they even got the photos that > > they did> > > > > because she barely stopped screaming the entire consult, and we were> > there> > > > > for close to 2 hours! I was also worried that because she was so > > upset, the> > > > > pictures wouldn't show her 'true' Torticollis, but they did for the> > most> > > > > part. It's a bit worse in real life, but they saw that 'in person' - > > so it> > > > > really doesn't matter.> > > > >> > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't> > be so > > > > > concerned and I can't say that we would band. In fact, I can almost> > > > > certainly say that we wouldn't. She will have hair that will mostly> > cover> > > > > it, and it isn't severe by any means. It's to the right, so it's > > difficult> > > > > to get good photos of, and it's a bit worse than it appears - but not> > by> > > > > much. They said that the flatness straight across is mostly because > > of her> > > > > fontanelle that is still open, and that it's something we should> > watch.> > > > >> > > > > But. And there's always a 'but', right? Because of the > > > > > Torticollis/Plagiocephaly, she has some significant asymmetry going> > on..> > > > > which is what I was really concerned about going in. I had definitely> > > > > noticed that her right ear seemed shifted forward.. but I had a hard > > time> > > > > differentiating what was 'real' and what was her mommy over-analyzing> > > > > things. So it was really comforting to have someone else see it, too. > > So my> > > > > biggest concerns were her right ear being more forward than the left> > and her> > > > > left eye seeming a bit smaller/weighed down (because there is more > > 'head' on> > > > > that side). And those things were confirmed. The left side of her> > forehead> > > > > is flatter than the right and her right ear/eye/cheek are anterior to > > the> > > > > left. One side of her cheek/jaw is also shifted, but I can't recall> > which> > > > > side. I want to say that it's the right, but I'm not sure. > > > > >> > > > > And for those reasons, they think that she absolutely needs a band.> > Clearly,> > > > > it's a cosmetic issue... I don't really want her to be insecure about > > having> > > > > her hair up because one ear is closer to her face than the other.. or> > > > > because one eye is smaller. It would also make things like getting> > glasses > > > > > that fit complicated. And it could absolutely cause jaw issues> > later... I've> > > > > had my fair share, including braces as an adult - so that's not> > something we > > > > > need. So I left the visit pretty certain that we would go ahead with> > it.> > > > >> > > > > But I still have some hestiations. I talked to her SLP > > (speech/feeding> > > > > therapist) about it this morning and found out that she had> > Torticollis as a> > > > > child, including surgery in the first grade to loosen the muscle! I > > had no> > > > > idea! She said that she still has issues with finding glasses that> > fit on> > > > > her ears and nose correctly, but that otherwise it doesn't bother her > > much -> > > > > and she looks 'normal' to me. She seemed to agree with my outlook> > (that I> > > > > stole from someone here! thank you, it's helped tremendously!) that > > we will> > > > > never regret doing it, but may regret not doing it. I also asked her> > OT what> > > > > she thought, and she seemed to agree also... though she gasped at the > > > > > pricetag (and insisted that there were cheaper options) and she also> > said> > > > > that usually kids that they see there with helmets have much more> > severe > > > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I> > wouldn't be> > > > > too concerned about her flatness. It's the facial shift that really > > concerns> > > > > me. She recommended that I ask her PT what she thought.. since she> > knows> > > > > much more about Torticollis, but her PT is usually all rainbows and > > sunshine> > > > > and writes most things off because they *could* be worse , so I don't> > think> > > > > her opinion will really alter mine.> > > > > > > > > > So while I was pleased with our appointment for the most part, I> > still have> > > > > some concerns/questions. If anyone has any insight, please share!> > > > > > > > > > 1) What ARE the other options, outside of CT? I know that there are> > other> > > > > companies, but after researching it a bit - it seemed like CT was> > much more > > > > > reputable and had better success. Are the other companies/types of> > bands> > > > > significantly cheaper? The price won't hold us back if she needs it> > (it's > > > > > $3k for us since we're military), but if it's like 'buying the name> > brand> > > > > even though the store brand works fine', I'd like to know. I don't > > think> > > > > that's the case, but I want to ask anyway! Cranial bands are a> > Tricare> > > > > exclusion, so I'm not sure it's worth the trouble in appealing them a > > > > > hundred times.> > > > >> > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia> > has> > > > > developmental delays, she is not yet sitting and probably won't be > > anytime> > > > > soon. She does spend a lot of time on her tummy, but the> > > > > Tort/Plagio/Asymmetry has definitely worsened even with that.> > > > > > > > > > 3) If she does a band and her facial asymmetry corrects, how common> > is it to> > > > > have it occur again after removing the band?> > > > >> > > > > 4) Could someone help me understand her measurements? I can't > > remember which> > > > > mean what!> > > > >> > > > > Traditional Cranial Vault Asymmetry: 5> > > > > fzR-euL: 138> > > > > fzL-euR: 133 > > > > >> > > > > Cranial Vault Asymmetry: 8> > > > > fzR-OcpL: 148> > > > > fzL-OcpR: 140> > > > >> > > > > Skull Base Asymmetry: 10 > > > > > sn-tL: 83> > > > > sn:tR: 73> > > > >> > > > > Also, when you have your DSi photos done, do you usually notice that> > the> > > > > measurements are the same as the manual ones, better, or worse? > > > > >> > > > > I think that's it. Other than the inevitable, 'if you were in my> > shoes, what> > > > > would you do?' question! I am uploading her scans under M shortly. > > > > >> > > > > Kim> > > > >> > > >> > >> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 My doc faxed the papers and I got a call in. 3 daysSent via BlackBerry from T-MobileFrom: K S Date: Fri, 17 Apr 2009 18:42:38 -0500<Plagiocephaly >Subject: Re: Re: Mia's Evaluation/Pictures Oh, really? I just assumed that they wouldn't allow siblings! How long does the approval process take? KimOn Fri, Apr 17, 2009 at 5:05 PM, <mommy2jaylinaaol> wrote:My four year old goes. And it would not be necessary for your husband to go, its nice to have company, but I'd rather fly alone than drive lol. Good luck with your choice Sent via BlackBerry from T-MobileFrom: K S Date: Fri, 17 Apr 2009 15:39:13 -0500 <Plagiocephaly >Subject: Re: Re: Mia's Evaluation/PicturesThanks so much for sharing! It's 198 miles one way for us, so about 3 1/2 hours. I'm trying to decide if Angel Flight would be worth it for us or if it would make things more difficult. I think that we'll probably just end up driving since my husband won't always be able to take off from work for full day trips like that (Navy). I have another daughter (4) who I will need to take with me, and I'm assuming that you can't do that with Angel Flight - though I'm not sure. I had never heard of Earth Angels, how neat is that! Mia has her DSi scheduled for next Friday, so it looks like many trips in our future! KimOn Fri, Apr 17, 2009 at 10:28 AM, Heidrun Benbrook <hrbenbrookgmail> wrote:Hello Kim:We are one of the families who used Angel Flight. Our trip was 350 miles by car, so about 6+ hrs each way. Angel Flight would take us there in about 2 to 2 1/2 hrs, all depending on winds and speed of particular aircraft. Our pilots would wait for us at the airport to take us back that same day. We always rented a car to get to the clinic, but found out (on our very last flight, alas) that there are also " Earth Angels " who will take care of ground transportation. There are lots of wonderful people out there!!! Maybe one of the members of this group would volunteer his/her services for your transport. Make sure you take a carseat (a smallish one, I don't think most of the aircraft would accomodate anything like a Brittax). There seems to be no law for child restraint in a small aircraft, but an active baby can be hard to contain and you don't want to distract the pilot. Best of luck to you and your precious little one,HeidrunProud Grandma to Aiden (graduated August 08) and Abbey On Fri, Apr 17, 2009 at 6:20 AM, <nwilkens2275 > wrote:Well, shucks...Glad I could help! :)Jake-2.5 (DOCBand Grad 9/08)Jordan-5> > > > >> > > > > We had our evaluation at CT in Charlotte yesterday. It has been a> > longggg> > > > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to > > Wednesday> > > > > morning in Atlanta (~1 hour each way), so there was already a lot of> > > > > traveling going on... and after she finished yesterday morning, we> > headed > > > > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and> > then> > > > > headed home. We got back really late and then I had to scramble> > around all > > > > > morning getting 'the sister' to preschool and Mia to back to back> > therapy. I> > > > > need a long NAP!> > > > >> > > > > Anyway, everything went fine at CT. It was actually really nice to > > SEE what> > > > > I have been THINKING that I was seeing in photos and measurements. It> > makes> > > > > me feel like I'm not just crazy. Mia really made them earn their > > keep,> > > > > though. She has some sensory issues and really doesn't like being> > touched,> > > > > especially her head.. so she screamed hysterically the entire time > > and all> > > > > they were doing was trying to get photos and measurements! It made> > things> > > > > very challenging. I was shocked that they even got the photos that > > they did> > > > > because she barely stopped screaming the entire consult, and we were> > there> > > > > for close to 2 hours! I was also worried that because she was so > > upset, the> > > > > pictures wouldn't show her 'true' Torticollis, but they did for the> > most> > > > > part. It's a bit worse in real life, but they saw that 'in person' - > > so it> > > > > really doesn't matter.> > > > >> > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't> > be so > > > > > concerned and I can't say that we would band. In fact, I can almost> > > > > certainly say that we wouldn't. She will have hair that will mostly> > cover> > > > > it, and it isn't severe by any means. It's to the right, so it's > > difficult> > > > > to get good photos of, and it's a bit worse than it appears - but not> > by> > > > > much. They said that the flatness straight across is mostly because > > of her> > > > > fontanelle that is still open, and that it's something we should> > watch.> > > > >> > > > > But. And there's always a 'but', right? Because of the > > > > > Torticollis/Plagiocephaly, she has some significant asymmetry going> > on..> > > > > which is what I was really concerned about going in. I had definitely> > > > > noticed that her right ear seemed shifted forward.. but I had a hard > > time> > > > > differentiating what was 'real' and what was her mommy over-analyzing> > > > > things. So it was really comforting to have someone else see it, too. > > So my> > > > > biggest concerns were her right ear being more forward than the left> > and her> > > > > left eye seeming a bit smaller/weighed down (because there is more > > 'head' on> > > > > that side). And those things were confirmed. The left side of her> > forehead> > > > > is flatter than the right and her right ear/eye/cheek are anterior to > > the> > > > > left. One side of her cheek/jaw is also shifted, but I can't recall> > which> > > > > side. I want to say that it's the right, but I'm not sure. > > > > >> > > > > And for those reasons, they think that she absolutely needs a band.> > Clearly,> > > > > it's a cosmetic issue... I don't really want her to be insecure about > > having> > > > > her hair up because one ear is closer to her face than the other.. or> > > > > because one eye is smaller. It would also make things like getting> > glasses > > > > > that fit complicated. And it could absolutely cause jaw issues> > later... I've> > > > > had my fair share, including braces as an adult - so that's not> > something we > > > > > need. So I left the visit pretty certain that we would go ahead with> > it.> > > > >> > > > > But I still have some hestiations. I talked to her SLP > > (speech/feeding> > > > > therapist) about it this morning and found out that she had> > Torticollis as a> > > > > child, including surgery in the first grade to loosen the muscle! I > > had no> > > > > idea! She said that she still has issues with finding glasses that> > fit on> > > > > her ears and nose correctly, but that otherwise it doesn't bother her > > much -> > > > > and she looks 'normal' to me. She seemed to agree with my outlook> > (that I> > > > > stole from someone here! thank you, it's helped tremendously!) that > > we will> > > > > never regret doing it, but may regret not doing it. I also asked her> > OT what> > > > > she thought, and she seemed to agree also... though she gasped at the > > > > > pricetag (and insisted that there were cheaper options) and she also> > said> > > > > that usually kids that they see there with helmets have much more> > severe > > > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I> > wouldn't be> > > > > too concerned about her flatness. It's the facial shift that really > > concerns> > > > > me. She recommended that I ask her PT what she thought.. since she> > knows> > > > > much more about Torticollis, but her PT is usually all rainbows and > > sunshine> > > > > and writes most things off because they *could* be worse , so I don't> > think> > > > > her opinion will really alter mine.> > > > > > > > > > So while I was pleased with our appointment for the most part, I> > still have> > > > > some concerns/questions. If anyone has any insight, please share!> > > > > > > > > > 1) What ARE the other options, outside of CT? I know that there are> > other> > > > > companies, but after researching it a bit - it seemed like CT was> > much more > > > > > reputable and had better success. Are the other companies/types of> > bands> > > > > significantly cheaper? The price won't hold us back if she needs it> > (it's > > > > > $3k for us since we're military), but if it's like 'buying the name> > brand> > > > > even though the store brand works fine', I'd like to know. I don't > > think> > > > > that's the case, but I want to ask anyway! Cranial bands are a> > Tricare> > > > > exclusion, so I'm not sure it's worth the trouble in appealing them a > > > > > hundred times.> > > > >> > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia> > has> > > > > developmental delays, she is not yet sitting and probably won't be > > anytime> > > > > soon. She does spend a lot of time on her tummy, but the> > > > > Tort/Plagio/Asymmetry has definitely worsened even with that.> > > > > > > > > > 3) If she does a band and her facial asymmetry corrects, how common> > is it to> > > > > have it occur again after removing the band?> > > > >> > > > > 4) Could someone help me understand her measurements? I can't > > remember which> > > > > mean what!> > > > >> > > > > Traditional Cranial Vault Asymmetry: 5> > > > > fzR-euL: 138> > > > > fzL-euR: 133 > > > > >> > > > > Cranial Vault Asymmetry: 8> > > > > fzR-OcpL: 148> > > > > fzL-OcpR: 140> > > > >> > > > > Skull Base Asymmetry: 10 > > > > > sn-tL: 83> > > > > sn:tR: 73> > > > >> > > > > Also, when you have your DSi photos done, do you usually notice that> > the> > > > > measurements are the same as the manual ones, better, or worse? > > > > >> > > > > I think that's it. Other than the inevitable, 'if you were in my> > shoes, what> > > > > would you do?' question! I am uploading her scans under M shortly. > > > > >> > > > > Kim> > > > >> > > >> > >> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 Last year, a close friend got Tricare to reimburse about 90%, but she submitted a letter, pictures and medical necessity letter AFTER the whole process was done. She just got reimburse about year later. Hope you can go her route, as I already got a denial, Annie > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg > week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday > morning in Atlanta (~1 hour each way), so there was already a lot of > traveling going on... and after she finished yesterday morning, we headed > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then > headed home. We got back really late and then I had to scramble around all > morning getting 'the sister' to preschool and Mia to back to back therapy. I > need a long NAP! > > Anyway, everything went fine at CT. It was actually really nice to SEE what > I have been THINKING that I was seeing in photos and measurements. It makes > me feel like I'm not just crazy. Mia really made them earn their keep, > though. She has some sensory issues and really doesn't like being touched, > especially her head.. so she screamed hysterically the entire time and all > they were doing was trying to get photos and measurements! It made things > very challenging. I was shocked that they even got the photos that they did > because she barely stopped screaming the entire consult, and we were there > for close to 2 hours! I was also worried that because she was so upset, the > pictures wouldn't show her 'true' Torticollis, but they did for the most > part. It's a bit worse in real life, but they saw that 'in person' - so it > really doesn't matter. > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so > concerned and I can't say that we would band. In fact, I can almost > certainly say that we wouldn't. She will have hair that will mostly cover > it, and it isn't severe by any means. It's to the right, so it's difficult > to get good photos of, and it's a bit worse than it appears - but not by > much. They said that the flatness straight across is mostly because of her > fontanelle that is still open, and that it's something we should watch. > > But. And there's always a 'but', right? Because of the > Torticollis/Plagiocephaly, she has some significant asymmetry going on.. > which is what I was really concerned about going in. I had definitely > noticed that her right ear seemed shifted forward.. but I had a hard time > differentiating what was 'real' and what was her mommy over-analyzing > things. So it was really comforting to have someone else see it, too. So my > biggest concerns were her right ear being more forward than the left and her > left eye seeming a bit smaller/weighed down (because there is more 'head' on > that side). And those things were confirmed. The left side of her forehead > is flatter than the right and her right ear/eye/cheek are anterior to the > left. One side of her cheek/jaw is also shifted, but I can't recall which > side. I want to say that it's the right, but I'm not sure. > > And for those reasons, they think that she absolutely needs a band. Clearly, > it's a cosmetic issue... I don't really want her to be insecure about having > her hair up because one ear is closer to her face than the other.. or > because one eye is smaller. It would also make things like getting glasses > that fit complicated. And it could absolutely cause jaw issues later... I've > had my fair share, including braces as an adult - so that's not something we > need. So I left the visit pretty certain that we would go ahead with it. > > But I still have some hestiations. I talked to her SLP (speech/feeding > therapist) about it this morning and found out that she had Torticollis as a > child, including surgery in the first grade to loosen the muscle! I had no > idea! She said that she still has issues with finding glasses that fit on > her ears and nose correctly, but that otherwise it doesn't bother her much - > and she looks 'normal' to me. She seemed to agree with my outlook (that I > stole from someone here! thank you, it's helped tremendously!) that we will > never regret doing it, but may regret not doing it. I also asked her OT what > she thought, and she seemed to agree also... though she gasped at the > pricetag (and insisted that there were cheaper options) and she also said > that usually kids that they see there with helmets have much more severe > Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be > too concerned about her flatness. It's the facial shift that really concerns > me. She recommended that I ask her PT what she thought.. since she knows > much more about Torticollis, but her PT is usually all rainbows and sunshine > and writes most things off because they *could* be worse , so I don't think > her opinion will really alter mine. > > So while I was pleased with our appointment for the most part, I still have > some concerns/questions. If anyone has any insight, please share! > > 1) What ARE the other options, outside of CT? I know that there are other > companies, but after researching it a bit - it seemed like CT was much more > reputable and had better success. Are the other companies/types of bands > significantly cheaper? The price won't hold us back if she needs it (it's > $3k for us since we're military), but if it's like 'buying the name brand > even though the store brand works fine', I'd like to know. I don't think > that's the case, but I want to ask anyway! Cranial bands are a Tricare > exclusion, so I'm not sure it's worth the trouble in appealing them a > hundred times. > > 2) Can facial asymmetry ever correct itself without a band? Since Mia has > developmental delays, she is not yet sitting and probably won't be anytime > soon. She does spend a lot of time on her tummy, but the > Tort/Plagio/Asymmetry has definitely worsened even with that. > > 3) If she does a band and her facial asymmetry corrects, how common is it to > have it occur again after removing the band? > > 4) Could someone help me understand her measurements? I can't remember which > mean what! > > Traditional Cranial Vault Asymmetry: 5 > fzR-euL: 138 > fzL-euR: 133 > > Cranial Vault Asymmetry: 8 > fzR-OcpL: 148 > fzL-OcpR: 140 > > Skull Base Asymmetry: 10 > sn-tL: 83 > sn:tR: 73 > > Also, when you have your DSi photos done, do you usually notice that the > measurements are the same as the manual ones, better, or worse? > > I think that's it. Other than the inevitable, 'if you were in my shoes, what > would you do?' question! I am uploading her scans under M shortly. > > Kim > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 Thanks for sharing, Annie! On Sat, Apr 18, 2009 at 1:14 AM, ambloved <ambloved@...> wrote: Last year, a close friend got Tricare to reimburse about 90%, but she submitted a letter, pictures and medical necessity letter AFTER the whole process was done. She just got reimburse about year later. Hope you can go her route, as I already got a denial, Annie > > We had our evaluation at CT in Charlotte yesterday. It has been a longggg> week! Mia was having a repeat pH Study (Reflux) from Tuesday to Wednesday> morning in Atlanta (~1 hour each way), so there was already a lot of > traveling going on... and after she finished yesterday morning, we headed> straight to Charlotte (~3 1/2 hours each way) for her evaluation, and then> headed home. We got back really late and then I had to scramble around all > morning getting 'the sister' to preschool and Mia to back to back therapy. I> need a long NAP!> > Anyway, everything went fine at CT. It was actually really nice to SEE what> I have been THINKING that I was seeing in photos and measurements. It makes > me feel like I'm not just crazy. Mia really made them earn their keep,> though. She has some sensory issues and really doesn't like being touched,> especially her head.. so she screamed hysterically the entire time and all > they were doing was trying to get photos and measurements! It made things> very challenging. I was shocked that they even got the photos that they did> because she barely stopped screaming the entire consult, and we were there > for close to 2 hours! I was also worried that because she was so upset, the> pictures wouldn't show her 'true' Torticollis, but they did for the most> part. It's a bit worse in real life, but they saw that 'in person' - so it > really doesn't matter.> > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't be so> concerned and I can't say that we would band. In fact, I can almost> certainly say that we wouldn't. She will have hair that will mostly cover > it, and it isn't severe by any means. It's to the right, so it's difficult> to get good photos of, and it's a bit worse than it appears - but not by> much. They said that the flatness straight across is mostly because of her > fontanelle that is still open, and that it's something we should watch.> > But. And there's always a 'but', right? Because of the> Torticollis/Plagiocephaly, she has some significant asymmetry going on.. > which is what I was really concerned about going in. I had definitely> noticed that her right ear seemed shifted forward.. but I had a hard time> differentiating what was 'real' and what was her mommy over-analyzing > things. So it was really comforting to have someone else see it, too. So my> biggest concerns were her right ear being more forward than the left and her> left eye seeming a bit smaller/weighed down (because there is more 'head' on > that side). And those things were confirmed. The left side of her forehead> is flatter than the right and her right ear/eye/cheek are anterior to the> left. One side of her cheek/jaw is also shifted, but I can't recall which > side. I want to say that it's the right, but I'm not sure.> > And for those reasons, they think that she absolutely needs a band. Clearly,> it's a cosmetic issue... I don't really want her to be insecure about having > her hair up because one ear is closer to her face than the other.. or> because one eye is smaller. It would also make things like getting glasses> that fit complicated. And it could absolutely cause jaw issues later... I've > had my fair share, including braces as an adult - so that's not something we> need. So I left the visit pretty certain that we would go ahead with it.> > But I still have some hestiations. I talked to her SLP (speech/feeding > therapist) about it this morning and found out that she had Torticollis as a> child, including surgery in the first grade to loosen the muscle! I had no> idea! She said that she still has issues with finding glasses that fit on > her ears and nose correctly, but that otherwise it doesn't bother her much -> and she looks 'normal' to me. She seemed to agree with my outlook (that I> stole from someone here! thank you, it's helped tremendously!) that we will > never regret doing it, but may regret not doing it. I also asked her OT what> she thought, and she seemed to agree also... though she gasped at the> pricetag (and insisted that there were cheaper options) and she also said > that usually kids that they see there with helmets have much more severe> Plagiocephaly. Again, if she didn't have the facial asymmetry, I wouldn't be> too concerned about her flatness. It's the facial shift that really concerns > me. She recommended that I ask her PT what she thought.. since she knows> much more about Torticollis, but her PT is usually all rainbows and sunshine> and writes most things off because they *could* be worse , so I don't think > her opinion will really alter mine.> > So while I was pleased with our appointment for the most part, I still have> some concerns/questions. If anyone has any insight, please share!> > 1) What ARE the other options, outside of CT? I know that there are other > companies, but after researching it a bit - it seemed like CT was much more> reputable and had better success. Are the other companies/types of bands> significantly cheaper? The price won't hold us back if she needs it (it's > $3k for us since we're military), but if it's like 'buying the name brand> even though the store brand works fine', I'd like to know. I don't think> that's the case, but I want to ask anyway! Cranial bands are a Tricare > exclusion, so I'm not sure it's worth the trouble in appealing them a> hundred times.> > 2) Can facial asymmetry ever correct itself without a band? Since Mia has> developmental delays, she is not yet sitting and probably won't be anytime > soon. She does spend a lot of time on her tummy, but the> Tort/Plagio/Asymmetry has definitely worsened even with that.> > 3) If she does a band and her facial asymmetry corrects, how common is it to > have it occur again after removing the band?> > 4) Could someone help me understand her measurements? I can't remember which> mean what!> > Traditional Cranial Vault Asymmetry: 5 > fzR-euL: 138> fzL-euR: 133> > Cranial Vault Asymmetry: 8> fzR-OcpL: 148> fzL-OcpR: 140> > Skull Base Asymmetry: 10> sn-tL: 83> sn:tR: 73> > Also, when you have your DSi photos done, do you usually notice that the > measurements are the same as the manual ones, better, or worse?> > I think that's it. Other than the inevitable, 'if you were in my shoes, what> would you do?' question! I am uploading her scans under M shortly. > > Kim> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.