Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Hi Sofie! Welcome to the group and congratulations on your twin boys! I hope that we are able to answer some of your questions. In the PHOTOS section of the group, there is a BEFORE AND AFTER folder of photos of group members' babies that you may want to take a look at to see the various head shapes and degrees of severity. In the LINKS section of the group, there is a SEVERITY ASSESSMENT folder, which contains information on what varying degrees of plagiocephaly (flat on one side of the back of the head), brachycephaly (flat all across the back of the head), and scaphocephaly (elongated headshape from front to back) look like. Treatment can include aggressive repositioning or helmeting/banding. Niels is young enough to perhaps benefit from aggressive repositioning, which is an exhausting, 24 hours a day, 7 day a week job, where the baby is kept off of his flat area. You mentioned that Niels is back-sleeping on his flat area, and you also mentioned a sling used during the day... is the back of his head against the fabric of the sling? Successful nighttime repo is critical to seeing results from aggressive repo. You would need definitely get Niels up off of his flat area, maybe turning his head to the side a bit, at nighttime. If you are interested in giving aggressive repo a try, you can go to the LINKS section of the group, REPOSITIONING folder, as well as the FILES section of the group, REPO HEADQUARTERS for some ideas, tips, products, studies, etc. Repo doesn't work for a lot of babies, but can work to improve headshape for some. We were able to use aggressive repo only to treat our daughter Remy's plagio/brachy - her progress photos are in the PHOTOS section, B & A photos, REPOSITIONED folder if you are interested in seeing what severity we were dealing with. The majority of group members helmeted or banded their babies to treat plagio. They are very knowledgeable and helpful on all issues associated with banding treatment, and can help you every step of the way if you pursue it with your son. I am not familiar of what might be available in your geographic area. We maintain a HELMET/BAND DATABASE in the DATABASE section of the group that list helmet/band facilities, if you would like to take a look at what we know about. We do have several currently active members seeking treatment in Europe with Dr. Blecher, who treats babies with the band in England and Germany. He is very hightly regarded and recommended, and his contact info is listed in the Database for Germany and England. I will do some internet searching to see if there is any treatment near you -- if you find a facility near you, would you post it? I could add it to the DATABASE for any future members seeking help in that part of the world. In the U.S., babies may see a variety of doctors, one of which must write a prescription for helmeting/banding. The pediatrician can write it, or may refer the baby to a pediatric neuro, neuro, plastic surgeon, etc. for evaluation and, in turn, a prescription. At times, it can take weeks to months to get through all of the appointments and into an actual band. I have no idea what you would go through, timewise or procedure wise, to get to the band. Sometimes the lack of knowledge about plagio treatment causes us to have to work backward, as in find a facility with the helmet, and then find a treatment-knowledgeable specialist who will recommend it. It is very understandable to be overwhelmed with all of the info here at the site. We are here to help, so please feel free to ask questions about any of your concerns!! Take care, Christie (Mom to Repo'd Remy) > Hi, > > I am completely new to all of this and just did a fair bit of > researching before I arrived at this Group. I delivered my twin boys > 4 months ago and they are both healthy and growing nicely. We are > Belgians but have been living in the UAE, Dubai for almost 6 years > where my husband works at the airport. > > My first born Niels, has a very odd shaped back head. It is > completely flat, in fact I have never seen a baby with a flat head > as bad as mine, he also has a very large head. I have been to a > neurosurgeon once because my baby cried a lot and he thought it > might be brain damage, also because of the large head and fontanel > but the scan came back clear, he is completely healthy. > > Niels is a very good sleeper but as you already guessed, only sleeps > on his back and refuses to sleep otherwise. We exercise a lot, on > his belly, side, walk around in the sling during the day but somehow > I thinkthat won't give him a round shaped head. > > My questions and concerns are the following: > > > How bad is bad? Can I see some pictures of other baby's heads so I > can compare? > > > Everyone talks about helmets, do I really need this for my son? > > > What kind of doctor should I go and consult about this? > > > Do you know of any doctors in Dubai? > > > I'm overwhelmed and also panicked by the tons of information on this > site, I hope all will be okay with my boy, I don't want him to be > teased later on in life with his flat head. > > > > Thanks in advance for your help, > > > > Kind regards, > > > > Sofie > Dubai Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Hi Sofie, I see that Christie has already helped you in answering the questions you have so far. I just wanted to welcome you to the group!! Please keep us posted on your son. mom to Makenna LLUMC helmet grad. > Hi, > > I am completely new to all of this and just did a fair bit of > researching before I arrived at this Group. I delivered my twin boys > 4 months ago and they are both healthy and growing nicely. We are > Belgians but have been living in the UAE, Dubai for almost 6 years > where my husband works at the airport. > > My first born Niels, has a very odd shaped back head. It is > completely flat, in fact I have never seen a baby with a flat head > as bad as mine, he also has a very large head. I have been to a > neurosurgeon once because my baby cried a lot and he thought it > might be brain damage, also because of the large head and fontanel > but the scan came back clear, he is completely healthy. > > Niels is a very good sleeper but as you already guessed, only sleeps > on his back and refuses to sleep otherwise. We exercise a lot, on > his belly, side, walk around in the sling during the day but somehow > I thinkthat won't give him a round shaped head. > > My questions and concerns are the following: > > > How bad is bad? Can I see some pictures of other baby's heads so I > can compare? > > > Everyone talks about helmets, do I really need this for my son? > > > What kind of doctor should I go and consult about this? > > > Do you know of any doctors in Dubai? > > > I'm overwhelmed and also panicked by the tons of information on this > site, I hope all will be okay with my boy, I don't want him to be > teased later on in life with his flat head. > > > > Thanks in advance for your help, > > > > Kind regards, > > > > Sofie > Dubai Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Hi Sofie and welcome to the group! I look forward to getting to know you. Dustie > > > Hi, > > > > I am completely new to all of this and just did a fair bit of > > researching before I arrived at this Group. I delivered my twin > boys > > 4 months ago and they are both healthy and growing nicely. We are > > Belgians but have been living in the UAE, Dubai for almost 6 years > > where my husband works at the airport. > > > > My first born Niels, has a very odd shaped back head. It is > > completely flat, in fact I have never seen a baby with a flat head > > as bad as mine, he also has a very large head. I have been to a > > neurosurgeon once because my baby cried a lot and he thought it > > might be brain damage, also because of the large head and fontanel > > but the scan came back clear, he is completely healthy. > > > > Niels is a very good sleeper but as you already guessed, only > sleeps > > on his back and refuses to sleep otherwise. We exercise a lot, on > > his belly, side, walk around in the sling during the day but > somehow > > I thinkthat won't give him a round shaped head. > > > > My questions and concerns are the following: > > > > > > How bad is bad? Can I see some pictures of other baby's heads so I > > can compare? > > > > > > Everyone talks about helmets, do I really need this for my son? > > > > > > What kind of doctor should I go and consult about this? > > > > > > Do you know of any doctors in Dubai? > > > > > > I'm overwhelmed and also panicked by the tons of information on > this > > site, I hope all will be okay with my boy, I don't want him to be > > teased later on in life with his flat head. > > > > > > > > Thanks in advance for your help, > > > > > > > > Kind regards, > > > > > > > > Sofie > > Dubai Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Hi and welcome to the group! If you go to the groups home page Plagiocephaly/ there is a photo section and you can look at some before and after pictures which may help. I think in the files section there is also some information on how to do some measurements, but I have never done them myself, so I'm afraid I can't help you out there. You asked how bad is bad...that's such a tough call, but I think if it's bad enough to bother you, then it's worth investigating further. You can always try repositioning, there are many people who have had success with this. But it is a 24/7 job and can be very difficult to get your baby to cooperate! Making a decision to get a band is a personal one and often can be difficult. You may not even get a lot of support from the medical community which makes it twice as hard. People usually go to a neurosurgeon or a cranio-facial specialist for the consult. It's too bad your are not in Belgium now. We've been reading some wonderful posts here lately proclaiming the alcolades of a Dr. Belcher from Germany. He sees children from the Germany, UK, Switerland, Belgium and all over that area. By the way, what part of Belgium are you from? I lived there for about 3 months in Brussels and then I used to make frequent trips back there for work...but I haven't been in years now....boy to miss the chocolate, beer and waffles! Good Luck! and /DOC/10-7-03 @10mos./PA fie_pollet <sofie.pollet@...> wrote: Hi,I am completely new to all of this and just did a fair bit of researching before I arrived at this Group. I delivered my twin boys 4 months ago and they are both healthy and growing nicely. We are Belgians but have been living in the UAE, Dubai for almost 6 years where my husband works at the airport.My first born Niels, has a very odd shaped back head. It is completely flat, in fact I have never seen a baby with a flat head as bad as mine, he also has a very large head. I have been to a neurosurgeon once because my baby cried a lot and he thought it might be brain damage, also because of the large head and fontanel but the scan came back clear, he is completely healthy.Niels is a very good sleeper but as you already guessed, only sleeps on his back and refuses to sleep otherwise. We exercise a lot, on his belly, side, walk around in the sling during the day but somehow I thinkthat won't give him a round shaped head.My questions and concerns are the following:How bad is bad? Can I see some pictures of other baby's heads so I can compare? Everyone talks about helmets, do I really need this for my son? What kind of doctor should I go and consult about this? Do you know of any doctors in Dubai? I'm overwhelmed and also panicked by the tons of information on this site, I hope all will be okay with my boy, I don't want him to be teased later on in life with his flat head.Thanks in advance for your help,Kind regards,SofieDubaiFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 , Welcome to the board! I'm sure you will find tons of support here. My son Jordan had a rough start in life too and is in a starband (similar to the DOC). He didn't have any trouble adjusting to it and I've found that if you decorate the helmet, especailly putting the name on it, it make the baby more approchable. Since jordan is a twin, a lot of times people will come up to us and start talking to him first since his name is right there on the front of the helmet. I've only had a couple urges to scream at people. About 95% of the time we get positive comments. Good Luck! ~~Buffalo, NY Mama to: , Jordan (cranio,plagio & tort~Starband 10-24-03) & Click below to see our boys! http://www.babiesonline.com/babies/t/twinsjordanjohn/ > Hi, My name is , my son, is 5 1/2 months old, and was > just diagnosed with positional plagio on Tuesday. The neuro > recommended a DOC band, so I made the appointment for casting for > next week with CTI in Durham, it's only a 2 hour drive, and since he > was born at Duke University and got to spend 10 days in their NICU > it might be neat to go back and let them see how he's doing. > was born 6 weeks early with holes in his lungs from prolonged low > amniotic fluid. He is doing great, between all of the doctors we > take him to they say that he doesn't have any developmental delays, > so we're hoping for the best at this point. I am worried about > getting the DOC band, doesn't like to wear a hat at all, so I > don't know how he'll do with the band, and from the pictures I've > seen I'm not sure how it will stay on his head. I tried to do the > repositioning before things got too bad, used a positioner and > everything, but he just found a way to get himself turned to the > flat side of his head. I would put him between the wedges with no > room to move on his left side, since the right is the flat side, he > would scoot right out from between them and turn himself to his back > and just flop his right leg over the wedge. I worry about the way > people will react to his helmet, but then with everything we've been > through just trying to make sure that he made it into this world > safely, I don't think I'll have too many problems with it, other > than the occassional urge to scream at people. Sorry for the long > post, I haven't had much support with him and sometimes I just need > to get it all out. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi , For me the hardest part of getting the helmet were the weeks leading up to when he actually had it put on. 100 things would go through my head at once. Then once he got it on it was one of those " is that it? " Aidan was 6 months old and he was playing in the exersaucer when the ortho plopped it on his head. The child never looked up! You will get uesd to people looking. I never had a problem but I went over board on the painting of his helmet - so I had a lot of people coming over because they wanted to see the artwork. Then they would ask me why he had the helmet and that was that. Most of the stares I got were def. " wow - COOL! " stares. I strongly believe decorating the helmet makes it easier. There are tons of great ideas in the photos. Welcome! Deb w/ Aidan C New to all of this > Hi, My name is , my son, is 5 1/2 months old, and was > just diagnosed with positional plagio on Tuesday. The neuro > recommended a DOC band, so I made the appointment for casting for > next week with CTI in Durham, it's only a 2 hour drive, and since he > was born at Duke University and got to spend 10 days in their NICU > it might be neat to go back and let them see how he's doing. > was born 6 weeks early with holes in his lungs from prolonged low > amniotic fluid. He is doing great, between all of the doctors we > take him to they say that he doesn't have any developmental delays, > so we're hoping for the best at this point. I am worried about > getting the DOC band, doesn't like to wear a hat at all, so I > don't know how he'll do with the band, and from the pictures I've > seen I'm not sure how it will stay on his head. I tried to do the > repositioning before things got too bad, used a positioner and > everything, but he just found a way to get himself turned to the > flat side of his head. I would put him between the wedges with no > room to move on his left side, since the right is the flat side, he > would scoot right out from between them and turn himself to his back > and just flop his right leg over the wedge. I worry about the way > people will react to his helmet, but then with everything we've been > through just trying to make sure that he made it into this world > safely, I don't think I'll have too many problems with it, other > than the occassional urge to scream at people. Sorry for the long > post, I haven't had much support with him and sometimes I just need > to get it all out. Thank you. > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 --hi and welcome. please let us know how the casting goes. Jenna hated hats but from the time her STARband was put on she didn't mind it. Angie and Jenna y , " " <heather_f74@e...> wrote: > Hi, My name is , my son, is 5 1/2 months old, and was > just diagnosed with positional plagio on Tuesday. The neuro > recommended a DOC band, so I made the appointment for casting for > next week with CTI in Durham, it's only a 2 hour drive, and since he > was born at Duke University and got to spend 10 days in their NICU > it might be neat to go back and let them see how he's doing. > was born 6 weeks early with holes in his lungs from prolonged low > amniotic fluid. He is doing great, between all of the doctors we > take him to they say that he doesn't have any developmental delays, > so we're hoping for the best at this point. I am worried about > getting the DOC band, doesn't like to wear a hat at all, so I > don't know how he'll do with the band, and from the pictures I've > seen I'm not sure how it will stay on his head. I tried to do the > repositioning before things got too bad, used a positioner and > everything, but he just found a way to get himself turned to the > flat side of his head. I would put him between the wedges with no > room to move on his left side, since the right is the flat side, he > would scoot right out from between them and turn himself to his back > and just flop his right leg over the wedge. I worry about the way > people will react to his helmet, but then with everything we've been > through just trying to make sure that he made it into this world > safely, I don't think I'll have too many problems with it, other > than the occassional urge to scream at people. Sorry for the long > post, I haven't had much support with him and sometimes I just need > to get it all out. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi & welcome to our group I'm sure will do just fine in his DOCband. I've heard great things about their Durham clinic. Most babies don't mind their bands for one second. I was shocked my daughter tolerated hers so well, slept just fine in it too. Babies usually adapt to things so well. It's usually us parents who have a harder time adjusting to seeing their baby in a band sounds like a strong little guy. Check out our " photos " section " before & after " folder for a ton of encouraging b & a pics of babies. These bands can produce amazing correction in babies!! You'll also adjust to going out in public with him. Yeah, people do stare & often ask silly questions, but I reminded myself I would probably stare too if I didn't know what it was for, it's human nature. Good luck w/the casting next week Keep us posted. Debbie Abby's mom DOCGrad MI --- In Plagiocephaly , " " <heather_f74@e...> wrote: > Hi, My name is , my son, is 5 1/2 months old, and was > just diagnosed with positional plagio on Tuesday. The neuro > recommended a DOC band, so I made the appointment for casting for > next week with CTI in Durham, it's only a 2 hour drive, and since he > was born at Duke University and got to spend 10 days in their NICU > it might be neat to go back and let them see how he's doing. > was born 6 weeks early with holes in his lungs from prolonged low > amniotic fluid. He is doing great, between all of the doctors we > take him to they say that he doesn't have any developmental delays, > so we're hoping for the best at this point. I am worried about > getting the DOC band, doesn't like to wear a hat at all, so I > don't know how he'll do with the band, and from the pictures I've > seen I'm not sure how it will stay on his head. I tried to do the > repositioning before things got too bad, used a positioner and > everything, but he just found a way to get himself turned to the > flat side of his head. I would put him between the wedges with no > room to move on his left side, since the right is the flat side, he > would scoot right out from between them and turn himself to his back > and just flop his right leg over the wedge. I worry about the way > people will react to his helmet, but then with everything we've been > through just trying to make sure that he made it into this world > safely, I don't think I'll have too many problems with it, other > than the occassional urge to scream at people. Sorry for the long > post, I haven't had much support with him and sometimes I just need > to get it all out. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi and welcome to the group! I'm sorry Klye has had so many challenges in his life so far, but it sounds as if you're both doing wonderful with everything! I wouldn't worry about the DOCband at all. Cranial Tech is wonderful and most babies adjust very well to their bands. The first couple days were harder on me than Hannah, and she too hated hats! As far as other people's reactions, I found it very helpful to have Hannah's name on her band. It worked as an icebreaker and made peole more likely ask about her band than just gawk at it. Let us know how everything goes. Good luck! , mom to Hannah, DOCgrad Cape Cod, Ma --- In Plagiocephaly , " " <heather_f74@e...> wrote: > Hi, My name is , my son, is 5 1/2 months old, and was > just diagnosed with positional plagio on Tuesday. The neuro > recommended a DOC band, so I made the appointment for casting for > next week with CTI in Durham, it's only a 2 hour drive, and since he > was born at Duke University and got to spend 10 days in their NICU > it might be neat to go back and let them see how he's doing. > was born 6 weeks early with holes in his lungs from prolonged low > amniotic fluid. He is doing great, between all of the doctors we > take him to they say that he doesn't have any developmental delays, > so we're hoping for the best at this point. I am worried about > getting the DOC band, doesn't like to wear a hat at all, so I > don't know how he'll do with the band, and from the pictures I've > seen I'm not sure how it will stay on his head. I tried to do the > repositioning before things got too bad, used a positioner and > everything, but he just found a way to get himself turned to the > flat side of his head. I would put him between the wedges with no > room to move on his left side, since the right is the flat side, he > would scoot right out from between them and turn himself to his back > and just flop his right leg over the wedge. I worry about the way > people will react to his helmet, but then with everything we've been > through just trying to make sure that he made it into this world > safely, I don't think I'll have too many problems with it, other > than the occassional urge to scream at people. Sorry for the long > post, I haven't had much support with him and sometimes I just need > to get it all out. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 well corbyn has been in his band now day two and we went running around today and i didnt notice any real looks or maybe i wasnt paying attention but so far soo good good luck hilly orbys mom Hi and welcome to the group! I'm sorry Klye has had so many challenges in his life so far, but it sounds as if you're both doing wonderful with everything! I wouldn't worry about the DOCband at all. Cranial Tech is wonderful and most babies adjust very well to their bands. The first couple days were harder on me than Hannah, and she too hated hats! As far as other people's reactions, I found it very helpful to have Hannah's name on her band. It worked as an icebreaker and made peole more likely ask about her band than just gawk at it. Let us know how everything goes. Good luck!, mom to Hannah, DOCgradCape Cod, Ma > Hi, My name is , my son, is 5 1/2 months old, and was > just diagnosed with positional plagio on Tuesday. The neuro > recommended a DOC band, so I made the appointment for casting for > next week with CTI in Durham, it's only a 2 hour drive, and since he > was born at Duke University and got to spend 10 days in their NICU > it might be neat to go back and let them see how he's doing. > was born 6 weeks early with holes in his lungs from prolonged low > amniotic fluid. He is doing great, between all of the doctors we > take him to they say that he doesn't have any developmental delays, > so we're hoping for the best at this point. I am worried about > getting the DOC band, doesn't like to wear a hat at all, so I > don't know how he'll do with the band, and from the pictures I've > seen I'm not sure how it will stay on his head. I tried to do the > repositioning before things got too bad, used a positioner and > everything, but he just found a way to get himself turned to the > flat side of his head. I would put him between the wedges with no > room to move on his left side, since the right is the flat side, he > would scoot right out from between them and turn himself to his back > and just flop his right leg over the wedge. I worry about the way > people will react to his helmet, but then with everything we've been > through just trying to make sure that he made it into this world > safely, I don't think I'll have too many problems with it, other > than the occassional urge to scream at people. Sorry for the long > post, I haven't had much support with him and sometimes I just need > to get it all out. Thank you. For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 I am guessing that my worries about looks are unfounded for the most part, with everything we went through with the hospitals and the looks I got every time I took him out to the stores the first couple of months out of the hospital with the oxygen tank, I worry because I have become quite short tempered with the gawkers over the course of all of it. A lot of my worry does come from the fact that we are in a military community and everyone is from so many different cultures that everyone is curious about the little differences. Since ’s birth I have met 1 other woman in the community that’s gone through anything like what I have gone through and am still going through with . I’m hoping that he does as well as everyone else’s children have done in theirs. I will keep everyone posted on how things go as it happens, thank you all for the kind words. From: Hilly [mailto:sbarlow@...] Sent: Thursday, February 12, 2004 10:49 PM Plagiocephaly Subject: Re: Re: New to all of this well corbyn has been in his band now day two and we went running around today and i didnt notice any real looks or maybe i wasnt paying attention but so far soo good good luck hilly orbys mom Hi and welcome to the group! I'm sorry Klye has had so many challenges in his life so far, but it sounds as if you're both doing wonderful with everything! I wouldn't worry about the DOCband at all. Cranial Tech is wonderful and most babies adjust very well to their bands. The first couple days were harder on me than Hannah, and she too hated hats! As far as other people's reactions, I found it very helpful to have Hannah's name on her band. It worked as an icebreaker and made peole more likely ask about her band than just gawk at it. Let us know how everything goes. Good luck! , mom to Hannah, DOCgrad Cape Cod, Ma --- In Plagiocephaly , " " <heather_f74@e...> wrote: > Hi, My name is , my son, is 5 1/2 months old, and was > just diagnosed with positional plagio on Tuesday. The neuro > recommended a DOC band, so I made the appointment for casting for > next week with CTI in Durham, it's only a 2 hour drive, and since he > was born at Duke University and got to spend 10 days in their NICU > it might be neat to go back and let them see how he's doing. > was born 6 weeks early with holes in his lungs from prolonged low > amniotic fluid. He is doing great, between all of the doctors we > take him to they say that he doesn't have any developmental delays, > so we're hoping for the best at this point. I am worried about > getting the DOC band, doesn't like to wear a hat at all, so I > don't know how he'll do with the band, and from the pictures I've > seen I'm not sure how it will stay on his head. I tried to do the > repositioning before things got too bad, used a positioner and > everything, but he just found a way to get himself turned to the > flat side of his head. I would put him between the wedges with no > room to move on his left side, since the right is the flat side, he > would scoot right out from between them and turn himself to his back > and just flop his right leg over the wedge. I worry about the way > people will react to his helmet, but then with everything we've been > through just trying to make sure that he made it into this world > safely, I don't think I'll have too many problems with it, other > than the occassional urge to scream at people. Sorry for the long > post, I haven't had much support with him and sometimes I just need > to get it all out. Thank you. For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi and welcome to the group. You will be in good hands with Cranial Tech. The DOC band is very light. My son also hates hats of any sort, but when we first got our DOC band he tugged at it once, and never bothered with it at all. He doesn't mind it one bit. Glad to hear is doing well otherwise. Please keep us posted on his progress. and /DOC/10-7-03 @10mos./PA (Graduating tomorrow 13-feb-04 !) <heather_f74@...> wrote: Hi, My name is , my son, is 5 1/2 months old, and was just diagnosed with positional plagio on Tuesday. The neuro recommended a DOC band, so I made the appointment for casting for next week with CTI in Durham, it's only a 2 hour drive, and since he was born at Duke University and got to spend 10 days in their NICU it might be neat to go back and let them see how he's doing. was born 6 weeks early with holes in his lungs from prolonged low amniotic fluid. He is doing great, between all of the doctors we take him to they say that he doesn't have any developmental delays, so we're hoping for the best at this point. I am worried about getting the DOC band, doesn't like to wear a hat at all, so I don't know how he'll do with the band, and from the pictures I've seen I'm not sure how it will stay on his head. I tried to do the repositioning before things got too bad, used a positioner and everything, but he just found a way to get himself turned to the flat side of his head. I would put him between the wedges with no room to move on his left side, since the right is the flat side, he would scoot right out from between them and turn himself to his back and just flop his right leg over the wedge. I worry about the way people will react to his helmet, but then with everything we've been through just trying to make sure that he made it into this world safely, I don't think I'll have too many problems with it, other than the occassional urge to scream at people. Sorry for the long post, I haven't had much support with him and sometimes I just need to get it all out. Thank you. For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 Hi Christy, Welcome to the group! We have many members who use/have used Cranial Tech in Dallas. You should be pleased to know that everyone has raved about them. You will be in great hands. I'm sorry that you have such a rough drive for the treatment. Kennedy is at an excellent age to be banded. Keep us posted and post a picture of your cutie when you can. Natasha, mommy to Aidan, DOCGrad Atlanta, GA > > Hi. I am a first time mom to a beautiful baby girl. Kennedy is 5 1/2 > months old and we are going Tuesday to have her head cast and before > pictures taken in Dallas at Cranial Tech. Kennedy has mild tort. and > severe plagio. I am handling it pretty well but it does sadden me a > litle to be at the beginning of all of this. It is a 5 hour drive to > Dallas and I am fortunate to have family there. Just wanted to jump > in and say " hello " to the group. I am glad there is a group out > there. Thank you for sharing your experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 Welcome to the group. I am mommy to jacob & isaac 17mos, we live in fort worth and go to ct dallas. its a great place and everyone is very friendly and helpful. there are some great tips for casting in the files section. this is a wonderful support group, everyone is always reading to listen when you need it. just be brave and stay calm. cant wait to see pics of kennedy. misty~ jacob & isaac 17mos fort worth tx > > Hi. I am a first time mom to a beautiful baby girl. Kennedy is 5 1/2 > months old and we are going Tuesday to have her head cast and before > pictures taken in Dallas at Cranial Tech. Kennedy has mild tort. and > severe plagio. I am handling it pretty well but it does sadden me a > litle to be at the beginning of all of this. It is a 5 hour drive to > Dallas and I am fortunate to have family there. Just wanted to jump > in and say " hello " to the group. I am glad there is a group out > there. Thank you for sharing your experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 Hello Christy Welcome to the group. Even though it's sad that you are having to go through all this, it is very good that Kennedy is being casted this young. Great name by the way. Please let us know how casting and picture taking goes. Sandy Willow's Mom Torticollis resolved Cranio Germany Grad > > Hi. I am a first time mom to a beautiful baby girl. Kennedy is 5 1/2 > months old and we are going Tuesday to have her head cast and before > pictures taken in Dallas at Cranial Tech. Kennedy has mild tort. and > severe plagio. I am handling it pretty well but it does sadden me a > litle to be at the beginning of all of this. It is a 5 hour drive to > Dallas and I am fortunate to have family there. Just wanted to jump > in and say " hello " to the group. I am glad there is a group out > there. Thank you for sharing your experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Hi and Welcome to the group. Kennedy is at a great age to begin treatment. We have a lot of parents from the Dallas CT office. You are in good hands. 5 hours is a long drive. I guess you'll be visiting family about every 1-2 weeks now for awhile. Don't know how much you know about casting. I would suggest taking a familly member or friend with you. One of you will help restrain Kennedy. The other can take pics and fetch dropped pacis/toys/bottles. If she likes her paci or bottle I highly reccommend taking them. You can give her a bottle in the first stage of the casting. She can have a paci the whole time. Some children have been known to fall asleep (not mine ). You may want to have a lollipop (one that will stay on the stick - not a dum dum pop). My daughter loved hers. Here is a link to pics of her casting. Notice the only time she is mad is when the lollipop is not in her mouth . CT will have everything you need for Kennedy's bath after the casting. Please let us know how it goes. mom to na DOC Grad SCchristytolar <christytolar@...> wrote: Hi. I am a first time mom to a beautiful baby girl. Kennedy is 5 1/2 months old and we are going Tuesday to have her head cast and before pictures taken in Dallas at Cranial Tech. Kennedy has mild tort. and severe plagio. I am handling it pretty well but it does sadden me a litle to be at the beginning of all of this. It is a 5 hour drive to Dallas and I am fortunate to have family there. Just wanted to jump in and say "hello" to the group. I am glad there is a group out there. Thank you for sharing your experiences.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Thank you. I wish someone could go with me for Kennedy and for me, but unfortunately my husband, mother and mother-in-law have to work, one sister is due to give birthany minute and has a 2 year old and my other sister has 3 year old so I am kind of on my own. Had not even thought about a sucker. Kennedy has never had one so that might work. She is pretty strong willed and hates having her head imobilized! She gets that from her mom. Thanks for the encouragement and info. I love my baby's head and will miss having access to it for kissing and rubbing her hair. : ) Christy Mom to Kennedy Tulsa, OK Filyaw <monicash@...> wrote: Hi and Welcome to the group. Kennedy is at a great age to begin treatment. We have a lot of parents from the Dallas CT office. You are in good hands. 5 hours is a long drive. I guess you'll be visiting family about every 1-2 weeks now for awhile. Don't know how much you know about casting. I would suggest taking a familly member or friend with you. One of you will help restrain Kennedy. The other can take pics and fetch dropped pacis/toys/bottles. If she likes her paci or bottle I highly reccommend taking them. You can give her a bottle in the first stage of the casting. She can have a paci the whole time. Some children have been known to fall asleep (not mine ). You may want to have a lollipop (one that will stay on the stick - not a dum dum pop). My daughter loved hers. Here is a link to pics of her casting. Notice the only time she is mad is when the lollipop is not in her mouth . CT will have everything you need for Kennedy's bath after the casting. Please let us know how it goes. mom to na DOC Grad SCchristytolar <christytolar@...> wrote: Hi. I am a first time mom to a beautiful baby girl. Kennedy is 5 1/2 months old and we are going Tuesday to have her head cast and before pictures taken in Dallas at Cranial Tech. Kennedy has mild tort. and severe plagio. I am handling it pretty well but it does sadden me a litle to be at the beginning of all of this. It is a 5 hour drive to Dallas and I am fortunate to have family there. Just wanted to jump in and say "hello" to the group. I am glad there is a group out there. Thank you for sharing your experiences.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 I don't know anything about the other band. Our insurance is being difficult too though and I cannot wait to clear it up because Kennedy is almost 6 months old and must begin treatment immediately. I intend to appeal in the mean time. Our insurance won't say if they will cover it or not and say that CT is out of network even though our pediatritian stated that we must have the DOC band. I am really frustrated because $3000 is a lot of money especially since it costs me over $100 just to drive so far with gas prices and food. I am just grateful there is treatment available. There is nothing I wouldn't do for my precious baby girl. Good luck to you, ! Christy Mom to Kennedy - to be casted 11/9 Tulsa, OKjenniferpascarella <jenniferpascarella@...> wrote: Hi there! my name is Jen and our daughter, andra, is 3 mo old and has been dianosed with torticollis and moderate/severe Plag. We have gone two times to CT in Charlotte and just went to a Ped Neuro yesterday. He feels that we need to get moving on this right away as this is an opportune time for her head shape and may not have to wear the band for more than a couple of months. The thing is that like most of you, we have been denied by our insurance company, United Healthcare. They say it is for cosmetic reasons. They say that CT is out of our network even if they were to cover it. they wanted us to go with Hangar Bands, but came back two days later and said that we have still been denied coverage. We are definately going to appeal this decision, but I was wondering if anyone has been in this exact situation or have had any type of experience with the Hangar band positive or negative. We would appreciate any help/advice!Thanks,JenFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 , Our daughter, Paige, is 8 months old and is currently wearing a Hanger band from the Charlotte area. We actually go through their sville office since it's so much closer to our home. At this point, we don't know if our insurance will cover the band, but we're hopeful. Regardless, the Hanger band cost us $1200 instead of CT's band cost of $3000. We went with Hanger mostly because we had a terrible CT experience during the initial meeting. It may have been a fluke or a practioner having a bad day (they were completely calluous and not helpful at all to me). As I walked out of their office that day, I swore that I would not use CT even if it meant driving to another state. Others haven't had that type of experience with Charlotte's CT office, but I sure did. What a nightmare. Fortunately, it wasn't necessary to go to another state. We went to a pediatric neurosurgeon at Baptist in Winston-Salem who suggested that Paige be banded. She's a mild to moderate case -- nothing severe thankfully. We could have done it up at Baptist, but a week before our Baptist appointment, I stumbled onto the Hanger option. And it was right here in the same city! Anyway, we chose Hanger and are really happy with our choice. She has only been in her band a week, but I phone interviewed another parent whose baby was in a Hanger band through their office (they were also very pleased with their Hanger experience). We work with Mike who is based out of Charlotte. He's awesome. There's another mom on here who also goes through him. Hopefully, she'll share her experience as well. I do wish that we would have started Paige in her band earlier, but I'm sure we'll still get great results at 8 months. I'm happy to talk with you more about my experiences with all 3 places (CT in Charlotte, the neurosurgeon at Baptist in Winston-Salem, and Hanger). Cheryl Paige - 8 mo plagio sville, NC > > Hi there! my name is Jen and our daughter, andra, is 3 mo old > and has been dianosed with torticollis and moderate/severe Plag. We > have gone two times to CT in Charlotte and just went to a Ped Neuro > yesterday. He feels that we need to get moving on this right away as > this is an opportune time for her head shape and may not have to wear > the band for more than a couple of months. The thing is that like > most of you, we have been denied by our insurance company, United > Healthcare. They say it is for cosmetic reasons. They say that CT > is out of our network even if they were to cover it. they wanted us > to go with Hangar Bands, but came back two days later and said that > we have still been denied coverage. We are definately going to > appeal this decision, but I was wondering if anyone has been in this > exact situation or have had any type of experience with the Hangar > band positive or negative. We would appreciate any help/advice! > > Thanks, > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Hi Jen, Welcome to the group! I can only speak of my experience, we used CT in Atlanta and we were very pleased. andra (my daughter's name too) is at an excellent age to begin treatment. Your results should be fantastic. Let us know what you decide in your area. Natasha > > Hi there! my name is Jen and our daughter, andra, is 3 mo old > and has been dianosed with torticollis and moderate/severe Plag. We > have gone two times to CT in Charlotte and just went to a Ped Neuro > yesterday. He feels that we need to get moving on this right away as > this is an opportune time for her head shape and may not have to wear > the band for more than a couple of months. The thing is that like > most of you, we have been denied by our insurance company, United > Healthcare. They say it is for cosmetic reasons. They say that CT > is out of our network even if they were to cover it. they wanted us > to go with Hangar Bands, but came back two days later and said that > we have still been denied coverage. We are definately going to > appeal this decision, but I was wondering if anyone has been in this > exact situation or have had any type of experience with the Hangar > band positive or negative. We would appreciate any help/advice! > > Thanks, > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Thank you again, . I looked at your casting pictures and found it really helpful to see what to expect. We will definately take the bottle and paci and a couple of her favorite washable toys and hope for the best. She is not going to enjoy the process I am sure. I am glad that I know that it isn't hurting her. We will be fine. I appreciate your sharing. Filyaw <monicash@...> wrote: Hi and Welcome to the group. Kennedy is at a great age to begin treatment. We have a lot of parents from the Dallas CT office. You are in good hands. 5 hours is a long drive. I guess you'll be visiting family about every 1-2 weeks now for awhile. Don't know how much you know about casting. I would suggest taking a familly member or friend with you. One of you will help restrain Kennedy. The other can take pics and fetch dropped pacis/toys/bottles. If she likes her paci or bottle I highly reccommend taking them. You can give her a bottle in the first stage of the casting. She can have a paci the whole time. Some children have been known to fall asleep (not mine ). You may want to have a lollipop (one that will stay on the stick - not a dum dum pop). My daughter loved hers. Here is a link to pics of her casting. Notice the only time she is mad is when the lollipop is not in her mouth . CT will have everything you need for Kennedy's bath after the casting. Please let us know how it goes. mom to na DOC Grad SCchristytolar <christytolar@...> wrote: Hi. I am a first time mom to a beautiful baby girl. Kennedy is 5 1/2 months old and we are going Tuesday to have her head cast and before pictures taken in Dallas at Cranial Tech. Kennedy has mild tort. and severe plagio. I am handling it pretty well but it does sadden me a litle to be at the beginning of all of this. It is a 5 hour drive to Dallas and I am fortunate to have family there. Just wanted to jump in and say "hello" to the group. I am glad there is a group out there. Thank you for sharing your experiences.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Hi Jen, Welcome to the group! I know that others here will be able to help you with your appeal to UHC. I had to appeal to my (different) ins. co. as well and won the appeal. My letter and many others are in the Files/Insurance Help section here on our website. It's alot of work but I have confidence that you can win. Otherwise, I'm glad that others have had a positive experience elsewhere in your area. Please let us know if you have any other questions. At her young age, andra is going to receive excellent correction in a shirt time. That is so great that you and your ped was on top of it!!!! Sue Colin F., 13 mos. STARband grad 9/04 brachy > > Hi there! my name is Jen and our daughter, andra, is 3 mo old > and has been dianosed with torticollis and moderate/severe Plag. We > have gone two times to CT in Charlotte and just went to a Ped Neuro > yesterday. He feels that we need to get moving on this right away as > this is an opportune time for her head shape and may not have to wear > the band for more than a couple of months. The thing is that like > most of you, we have been denied by our insurance company, United > Healthcare. They say it is for cosmetic reasons. They say that CT > is out of our network even if they were to cover it. they wanted us > to go with Hangar Bands, but came back two days later and said that > we have still been denied coverage. We are definately going to > appeal this decision, but I was wondering if anyone has been in this > exact situation or have had any type of experience with the Hangar > band positive or negative. We would appreciate any help/advice! > > Thanks, > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hi Jen, CT is also out of network for us. They denied us for that reason as well. I don't know if they would've covered it if they were in network, or if they would've denied us anyway due to cosmetic reasons. Hangar is also in our plan. We have Empire BC/BS. We didn't know about Hanger before getting the band. We may have still gone with CT anyway though since I have heard how reputable they are. We are paying $6000 ourselves for 's 2 bands. I am going to try to appeal that CT has the most training and they cast and band the most babies anywhere. Maybe this will show that this was the best place to go for the best results. Also, 's neurologist referred him to get the DOC Band. Maybe they will take that into consideration that he wrote that on the prescription. So we needed to get that specific band. We'll have to see. I still need to start on my appeal letter before it is too late!! andra is a great age to start treatment. She will get such fantastic results! Marcy and (7 months old) 2 months in DOC band # 1 Now in Doc band #2 New Jersey - In Plagiocephaly , " jenniferpascarella " <jenniferpascarella@y...> wrote: > > Hi there! my name is Jen and our daughter, andra, is 3 mo old > and has been dianosed with torticollis and moderate/severe Plag. We > have gone two times to CT in Charlotte and just went to a Ped Neuro > yesterday. He feels that we need to get moving on this right away as > this is an opportune time for her head shape and may not have to wear > the band for more than a couple of months. The thing is that like > most of you, we have been denied by our insurance company, United > Healthcare. They say it is for cosmetic reasons. They say that CT > is out of our network even if they were to cover it. they wanted us > to go with Hangar Bands, but came back two days later and said that > we have still been denied coverage. We are definately going to > appeal this decision, but I was wondering if anyone has been in this > exact situation or have had any type of experience with the Hangar > band positive or negative. We would appreciate any help/advice! > > Thanks, > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 Hi! my name is . I have RA, and a ton of ?'s. But for now I will just introduce myself and get comfortable with all of this. I am a 30 year old stay at home mom, my baby is 18 months old. I have been married for 4 1/2 years. I found out I have RA about 7 months ago, it came from no where. No one in my family has it. My husband is in the military,so I go to Navy doctors, and don't have alot of choice in the matter. anyway. I have had MRI's done on my hands and feet and all is good. The only thing that makes them think I have this is because I have alot of pain most of the days, and my body gets hot, plus I have no energy. I have no swelling of the joints, no erosion. I am on methotraxate for 5 months,celebrex 2 times a day, and now enbrel for 4 weeks. I still feel bad most days. I keep thinking maybe they have missed diagnosed me or something. I just want to feel like my old self again. If anyone out there relates please write back. I feel all alone, because I don't know anyone who has this to talk to. Well that's me for now. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 Hi , Do you know the result of your rheumatoid factor test? If it is positive and you have a high ESR and/or CPR, RA seems pretty likely. Having a negative rheumatoid factor doesn't rule out RA, but it makes the diagnosis less certain and more open to question, especially as you have had no response to treatments which are normally effective. Also, it is usual to have swollen joints in RA. Lack of energy is frequent in RA patients, but I'm not sure about the hot body bit. If I were you, I'd ask your doctor to review the diagnosis. Is your doctor a specialist rheumatologist? I think you need one of these and I imagine the Navy must have them. Good luck, n [ ] new to all of this Hi! my name is . I have RA, and a ton of ?'s. But for now I will just introduce myself and get comfortable with all of this. I am a 30 year old stay at home mom, my baby is 18 months old. I have been married for 4 1/2 years. I found out I have RA about 7 months ago, it came from no where. No one in my family has it. My husband is in the military,so I go to Navy doctors, and don't have alot of choice in the matter. anyway. I have had MRI's done on my hands and feet and all is good. The only thing that makes them think I have this is because I have alot of pain most of the days, and my body gets hot, plus I have no energy. I have no swelling of the joints, no erosion. I am on methotraxate for 5 months,celebrex 2 times a day, and now enbrel for 4 weeks. I still feel bad most days. I keep thinking maybe they have missed diagnosed me or something. I just want to feel like my old self again. If anyone out there relates please write back. I feel all alone, because I don't know anyone who has this to talk to. Well that's me for now. Thanks, Quote Link to comment Share on other sites More sharing options...
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