Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Gabby: Welcome to the group. I'll do my best to answer some of your questions..... first -how do you choose what type of dr to go with? choose a craniofacial plastic surgeon, a neurosurgeon, or a neurologist. second - how did you choose between the helmet and the doc band? We only had one choice - the band. We are VERY happy with the results so far!! For many it is availability, for some it is financial. The helmets usually go for less than the bands. I read something tonight about the band possibly hindering brain growth and that frightened me? Here is an article that researched bands and brain growth. Bands do not restrict brain growth! http://www.cranialtech.com/infocenter/publications/peds.pdf Thirdly - why is the band FDA approved and the helmet is not? Several years ago, Cranial Tech. was approached by the FDA to prove that their bands were safe. I believe it took them 2 years to prove their case ( and achieve FDA approval). Recently, the FDA made a requirement for all helmet manufacturers to obtain FDA approval. While these manufacturers collect and submit their data (to obtain approval), many are having parents sign a waiver to protect themselves until they get approved. Others have stopped making their helmets all together until they are approved. Because a helmet is not approved doesn't mean it doesn't work. It simply means that the FDA has not read thru that particular manufacturers case, or that they haven't yet submitted a case. It can take from 6 months to several years to obtain FDA approval. If you wish to discuss this topic further, there is an FDA eGroup. Finally- did anybody have trouble nursing with the band or helmet? Hanna wouldn't nurse (!!!!), so I can't speak from experience, but several moms have nursed with bands/helmets. Some find it a bit uncomfortable. One mom cut the feet off of long sport socks to cover her arms to protect them from the velcro, etc. Hope this helps you out. Good luck at your appt.!! Kendra todd537@... wrote: hi my name is gabby and my daughter also has positional plagiocephaly. we brought it to the drs attention at her 2 month check and he told us to reposition her. We try but she certainly favors her right side. Tomorrow is her 4 month check and we already got a referral to see a plastic surgeon next week. Although the back of her head is looking better, her ears seem to be a little off. I understand this is a common occurance. Anyway I have a few questions: first -how do you choose what type of dr to go with? second - how did you choose between the helmet and the doc band? I read something tonight about the band possibly hindering brain growth and that frightened me? Thirdly - why is the band FDA approved and the helmet is not? Finally- did anybody have trouble nursing with the band or helmet? I would greatly appreciate some advice. I just joined this group and would love to hear from other concerned parents Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 > hi my name is gabby and my daughter also has positional > plagiocephaly. we brought it to the drs attention at her 2 month > check and he told us to reposition her. We try but she certainly > favors her right side. Tomorrow is her 4 month check and we already > got a referral to see a plastic surgeon next week. Although the back > of her head is looking better, her ears seem to be a little off. I > understand this is a common occurance. Anyway I have a few > questions: first -how do you choose what type of dr to go with? You may want to see if a PT could help you out also. Where are you located? We went to a PT that was with the CT clinic in Madison it was excellent the things she showed me to do for strengthening. Do they thing your daugther has tort also?? > second - how did you choose between the helmet and the doc band? Can't help on this one as we are not to that stage yet. It seems we may be happy with just working with PT. I > read something tonight about the band possibly hindering brain growth > and that frightened me? Thirdly - why is the band FDA approved and > the helmet is not? Finally- did anybody have trouble nursing with the > band or helmet? I would greatly appreciate some advice. I just joined > this group and would love to hear from other concerned parents This group has helped me tremendously! My son is almost 5 months old and I to had concerns at 2 months and was told to reposition. But that was not enough. At 4 months they scared me about his head being fused or not fused, neurosurgeons etc. I then found the CT site and then this egroup. Don't hesitate too ask any of us questions. My son favors his left side so for the last 3 weeks we have positioned everything on his right. For sleeping we use a travel bud so he sleeps on his right side. (Check out www.snuglbuds.com) When he is on his back we use a butterfly pillow to releive pressure on his head. (also from snuglbuds) We work every day on a getting him to enjoy his tummy more and more. You can roll up receiving blankets and put them under the armpits so the child rests on elbows. (This will eleviate pressure on the tummy that they are not too used too) Lots of time in a walker or a exersaucer is awesome for them too. Hope some of this helps. Take care! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2000 Report Share Posted August 22, 2000 - Best wishes & how great that you guys are able to treat Clint so early!! Yay for Mom! Kimry, Mom to Abby, DOC band graduate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2000 Report Share Posted August 26, 2000 : Make sure you go into your appointment armed with information. Many of us have faced pediatricians who insist the head will round out on its own and say that treatment is not needed. If you haven't been there, go to www.cranialtech.com. They make the DOC band to correct plagio but also have a ton of info on their web site. Please keep us posted and ask any questions you have. Sue Luck mom to (almost done with DOC band!!) ----- Original Message ----- From: Cleveland <OpheliaBlue@...> <Plagiocephalyegroups> Sent: Friday, August 25, 2000 12:39 AM Subject: New Member > Just Wanted To Say Hello To Everyone. I Never Even Knew This Existed Till My Son Got It. He's Almost Five Months Old Now And Im Just Now Finding Out This Could Become Permanant. This Monday Is His Appointment With His Pediatrician. Im Sure She Can Suggest Some Options. > Have A Happy Day > > > > Get your FREE Email and Voicemail at Lycos Communications at > http://comm.lycos.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2000 Report Share Posted August 26, 2000 In a message dated 8/24/00 9:40:40 PM Pacific Daylight Time, OpheliaBlue@... writes: << Im Sure She Can Suggest Some Options. >> , Let's hope your ped is up to date on plagio. Many of our drs here put us off for several months. My 11mos son has been in helmet/PT since Jan. The treatment has made a world of difference. He has about another 2months left in helmet. Good luck and let us know what happens. Belinda(Indiana) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2000 Report Share Posted September 2, 2000 In a message dated 9/1/00 7:47:01 PM Pacific Daylight Time, ladydiver@... writes: << I am not looking to the long commutes to Chicago from Cincinnati every other weekend, but I realize it is in my son's best interest so I'll do anything to help him. I would love any advice and/or feedback! >> - Welcome. So glade you found us. It will all be worth it! You'll get results just may take a little longer since your child is 11 months but don't worry, depends on those growth spurts. You may see good results fast. My son was 6 months when he got his and out grew it in 7 1/2 weeks. Saw some good results in that time. Tammy & 12/8/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2000 Report Share Posted September 2, 2000 Hi (from Cincinnati)! My name is a and I also live in the Cincinnati area. My son, Jake, is 8 1/2 months old and we just picked up his DOC Band 1 1/2 weeks ago. Before that we had a helmet from THE BRACE SHOP, I imagine this is where yours was made too. Your story sounded sooooo familiar! I told my husband it was like reading one of my own e-mail messages. We were so frustrated with the helmet from The Brace Shop, it would never stay on. We went back about 6 times in one month and the helmet still wouldn't stay on. We started calling it the " expensive teething ring " . How long did your son try to wear the local helmet? We tried for about 1 month. I am so glad to hear that you are going to CT. I am amazed at how much better the band fits! Jake hasn't pulled the band off once! Our life is so much easier now, and we feel like we are doing something to solve our son some problems! , the person you met at Babies R Us, told us to watch for you! See knew that some of us could relate to your story. I think there are about 5 of us in the Cincinnati area now (that we know of). I was like you when I found out about this site and Cranial Technologies. When I saw the picture on the CT site of the head from the top down showing the flat spot, etc. I said " that's Jake " . I felt so much relief just knowing that there are people out there who are familiar with our situation. The doctor's office didn't even tell me it had a name (Plagiocephaly)! From what I have read your son can still see improvement staring the band at 11 months of age. Like Tammy said, it might just take a little longer. Feel free to email me directly at pwaggoner@.... The bottom line is --- YIPPEE, you've found us - you are not the only one dealing with this problem! Jake and I have an appointment on Thursday, September 7th at CT Chicago. When will you be going? Look forward to hearing from you, a ladydiver@... wrote: > > Hi, > > My son is eleven-months-old and scheduled to receive the DOC band > this month from Cranial Tech. in Chicago. We are excited to take him > there because we've heard that these bands work and the staff is very > helpful and monitors the progress of the band. Since he is older, we > hope that improvement can still be made. He was in a different > helmet before from another company that made them in Cincinnati, OH > but the helmet was a poor fit and never worked correctly or stayed on > his head. We also received extrememly poor customer service and > follow-through from this other place, and in the end, felt as though > we had lost valuable correction time. If there is anybody else in > the Cincinnati, OH area I'd love to hear from you! I met another > woman in Babies R' Us who's son also had plagiocephaly and she was > very helpful. Before I met her, I was unaware that this website or > any other sites on plagiocephaly existed. I felt as though my son > was the only one that had this issue, and at times I felt guilty for > not preventing it. I hope and pray that correction can still be made > since he is older. I am not looking to the long commutes to Chicago > from Cincinnati every other weekend, but I realize it is in my son's > best interest so I'll do anything to help him. I would love any > advice and/or feedback! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2000 Report Share Posted September 2, 2000 : Glad you are able to get to Chicago for treatment for your son. We traveled from Cleveland to Chicago and were very happy with the care and results from the DOC band. Best of luck and safe travels. Sue Luck ----- Original Message ----- From: <ladydiver@...> <Plagiocephalyegroups> Sent: Friday, September 01, 2000 10:46 PM Subject: New Member > > Hi, > > My son is eleven-months-old and scheduled to receive the DOC band > this month from Cranial Tech. in Chicago. We are excited to take him > there because we've heard that these bands work and the staff is very > helpful and monitors the progress of the band. Since he is older, we > hope that improvement can still be made. He was in a different > helmet before from another company that made them in Cincinnati, OH > but the helmet was a poor fit and never worked correctly or stayed on > his head. We also received extrememly poor customer service and > follow-through from this other place, and in the end, felt as though > we had lost valuable correction time. If there is anybody else in > the Cincinnati, OH area I'd love to hear from you! I met another > woman in Babies R' Us who's son also had plagiocephaly and she was > very helpful. Before I met her, I was unaware that this website or > any other sites on plagiocephaly existed. I felt as though my son > was the only one that had this issue, and at times I felt guilty for > not preventing it. I hope and pray that correction can still be made > since he is older. I am not looking to the long commutes to Chicago > from Cincinnati every other weekend, but I realize it is in my son's > best interest so I'll do anything to help him. I would love any > advice and/or feedback! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2000 Report Share Posted September 2, 2000 Thank you for your support. I'm so glad to finally have found all of you! :-) ----- Original Message ----- From: and Luck <msluck@...> <Plagiocephalyegroups> Sent: Saturday, September 02, 2000 10:24 AM Subject: Re: New Member > > : > Glad you are able to get to Chicago for treatment for your son. We traveled > from Cleveland to Chicago and were very happy with the care and results from > the DOC band. > > Best of luck and safe travels. > Sue Luck > > > ----- Original Message ----- > From: <ladydiver@...> > <Plagiocephalyegroups> > Sent: Friday, September 01, 2000 10:46 PM > Subject: New Member > > > > > > Hi, > > > > My son is eleven-months-old and scheduled to receive the DOC band > > this month from Cranial Tech. in Chicago. We are excited to take him > > there because we've heard that these bands work and the staff is very > > helpful and monitors the progress of the band. Since he is older, we > > hope that improvement can still be made. He was in a different > > helmet before from another company that made them in Cincinnati, OH > > but the helmet was a poor fit and never worked correctly or stayed on > > his head. We also received extrememly poor customer service and > > follow-through from this other place, and in the end, felt as though > > we had lost valuable correction time. If there is anybody else in > > the Cincinnati, OH area I'd love to hear from you! I met another > > woman in Babies R' Us who's son also had plagiocephaly and she was > > very helpful. Before I met her, I was unaware that this website or > > any other sites on plagiocephaly existed. I felt as though my son > > was the only one that had this issue, and at times I felt guilty for > > not preventing it. I hope and pray that correction can still be made > > since he is older. I am not looking to the long commutes to Chicago > > from Cincinnati every other weekend, but I realize it is in my son's > > best interest so I'll do anything to help him. I would love any > > advice and/or feedback! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2000 Report Share Posted September 3, 2000 Hi ! Welcome to the group! *smile* Just got back from a Chicago Trip.... our next one is on the 15th. So glad that Cranial Technologies was able to get you in so fast.. Good Luck! we Cinci people should try to get together sometime this month, maybe.... take it easy! (aka Kali) Original Message---r@... [mailto:ladydiver@...]ent: Friday, September 01, 2000 10:46 PMPlagiocephalyegroupsSubject: New Member Hi,My son is eleven-months-old and scheduled to receive the DOC band this month from Cranial Tech. in Chicago. We are excited to take him there because we've heard that these bands work and the staff is very helpful and monitors the progress of the band. Since he is older, we hope that improvement can still be made. He was in a different helmet before from another company that made them in Cincinnati, OH but the helmet was a poor fit and never worked correctly or stayed on his head. We also received extrememly poor customer service and follow-through from this other place, and in the end, felt as though we had lost valuable correction time. If there is anybody else in the Cincinnati, OH area I'd love to hear from you! I met another woman in Babies R' Us who's son also had plagiocephaly and she was very helpful. Before I met her, I was unaware that this website or any other sites on plagiocephaly existed. I felt as though my son was the only one that had this issue, and at times I felt guilty for not preventing it. I hope and pray that correction can still be made since he is older. I am not looking to the long commutes to Chicago from Cincinnati every other weekend, but I realize it is in my son's best interest so I'll do anything to help him. I would love any advice and/or feedback! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 What did your unsuccessful helmet look like? Gabby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 Hi Deb, Nice to meet you. How is your oldest son doing? And your 6 year old? Do they have AFOs? What part of the world are you in? I'm in Seattle, but a state or province is fine. I have to say Seattle instead of Washington so people won't think DC. I'm married, a mother of two adult sons, and retired from teaching. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 In a message dated 9/11/2000 10:43:39 AM Pacific Daylight Time, DEBSPRANG@... writes: << so helpful,so much easier to handle,when you have a group like this one,thanks for the computer today,for all you great people on here,so we know we are not alone with our ,physical selves,we can deal with our c.m.t.better.thanks everyone/ mamalama >> Speak up anytime. I love to hear from other Moms with CMT that have children with CMT. My son is just about out of a stroller. I miss it already. They make walking so easy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 Deb, Welcome. Have you or your kids had any treatment for CMT. Please share how you are getting along. I too came from a family of " funny feet " . In my case it was my Grandmother who hand them before me. Then they skipped a generation to show up again in me. I have three kids, none of who show any signs and symtoms of the disease. Trudy ----- Original Message ----- From: <DEBSPRANG@...> <egroups> Sent: Monday, September 11, 2000 10:41 AM Subject: [] new member > > hello to everyone;have been reading the posts for a couple of months > now,thought it is time i joined in.i am a 45 year old female,with > type > 1 a dignoised at 42, always had problems ,childhood was very trying, > to say the least.i am the mother of 4 children,2 boys,2girls.ages > 20,19,13,and6,my oldest and youngest have it,my son who is 20 has it > fairly severe,my youngest girl has not been tested yet but as a > mother > we know,right/ i use a cane, have for a couple of years now, before > that a baby in the stroller was a great aid to hold on to.cannot walk > to far anymore,never could really.have always fallen a few times a > year.my mother had c.m.t.,she never had a name for our funny feet,i > watched her struggle her short life,trying to work,raise two > kids,being widowed early,mom had 2 kids,both of them with c.m.t.my > brother is self medicating also,as mom did,it is hard to deal > with,but > it is all i have known,being a funny walker not much of a talker,it > is > so helpful,so much easier to handle,when you have a group like this > one,thanks for the computer today,for all you great people on here,so > we know we are not alone with our ,physical selves,we can deal with > our c.m.t.better.thanks everyone/ > mamalama > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 hello and welcome mamalama. dee here, ialso have a son 81/2 with cmt. come to think of it, i do miss that stroller. look forward to hearing your input about life w/ cmt. i'm type 1. have a blessed day. dee > hello to everyone;have been reading the posts for a couple of months > now,thought it is time i joined in.i am a 45 year old female,with > type > 1 a dignoised at 42, always had problems ,childhood was very trying, > to say the least.i am the mother of 4 children,2 boys,2girls.ages > 20,19,13,and6,my oldest and youngest have it,my son who is 20 has it > fairly severe,my youngest girl has not been tested yet but as a > mother > we know,right/ i use a cane, have for a couple of years now, before > that a baby in the stroller was a great aid to hold on to.cannot walk > to far anymore,never could really.have always fallen a few times a > year.my mother had c.m.t.,she never had a name for our funny feet,i > watched her struggle her short life,trying to work,raise two > kids,being widowed early,mom had 2 kids,both of them with c.m.t.my > brother is self medicating also,as mom did,it is hard to deal > with,but > it is all i have known,being a funny walker not much of a talker,it > is > so helpful,so much easier to handle,when you have a group like this > one,thanks for the computer today,for all you great people on here,so > we know we are not alone with our ,physical selves,we can deal with > our c.m.t.better.thanks everyone/ > mamalama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2000 Report Share Posted September 15, 2000 hi my name is debbie and i am 34 was diagnosed with cmt at a young age. i don't know what typy. i can relate to just about everything you just said. i have a 5yr old daughter don't know if she has it but my mother has it really bad my sister has some signs of it .it's some- times feels like were all alone. it's a real tough road to travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2000 Report Share Posted September 15, 2000 Hi Debbie, You have a family of people who understand how you feel now. How are you doing? How is your mom affected? I've been fortunate to meet two CMTers in Seattle in the past year, but many of us have never met another CMTer, other than perhaps a family member. The internet is a marvel - helping us make connections. There are various clean CMT chat rooms available, too, where CMTers chat without any interference from ousiders. We can learn a lot about CMT and how to live with it by talking with other CMTers or their family members. Kat Seattle USA Type 2 Married/ 2 adult sons Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2000 Report Share Posted September 15, 2000 Debi, Welcome!! I have found everyone here to be very helpful & friendly. I just joined 3 weeks or so ago. You are not alone. Julee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2000 Report Share Posted September 18, 2000 Welcome Debi and Julee, My name is Carina and I'm 18 and I also have CMT!! Carina _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2000 Report Share Posted September 18, 2000 Welcome Debi and Julee, My name is Carina and I'm 18 and I also have CMT!! Carina _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2000 Report Share Posted September 19, 2000 hi kat, I am sure glad to know there is someone out there who understands. I'm doing okay right now, but sometimes I get to feeling very low and don't know how to handle it.My mom is very little help because she is always negative about everything.she has alot of trouble breathing and her hands are all crippled up, and she has very little strength in her legs and the doctors have no answers they just keep popping more pills into her. deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2000 Report Share Posted September 19, 2000 hi carina, nice to meet you, how are you doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 Crystal & , I am happy you found a Ped that gave you a diagnosis. If he referred you to a PT and he states the same, then I would think you should stick with them. If you have concerns please address them. A lot of mommies often end up with the second Ped's opinion, and are looking for your first Ped's opinion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 If your pt person says tort, it is tort. I diagnosed my sons tort, my ped thought I was whacked! This happens a lot! It was so evident that I'm not sure if someone would have hit her over the head she still wouldn't of seen it! Stay with the pt and get the tort resolved! Gross motors skill delays are problem with many tort kids. If the head shape bothers you, by all means get a DOC Band. Funny how we get so many conflicting responeses from doctors. Tammy & 12/8/99 PS Keep looking for the right ped. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 Crystal: Many of us have had conflicting comments from doctors, and many have also had a ped who tells them to do nothing. It is so confusing. I think that you need to follow your instinct and get help for your son. Physical therapy is critical for correcting tort, and plagio cannot be fully corrected without correcting the tort. Keep looking for the right doctor. I know it is frustrating. If you believe the DOC band is the right option for your son, call the nearest clinic and they will refer you to a specialist who is familiar with their product. That is what I had to do when I couldn't find a doctor to write the RX for the band - they would only write for the local helmet. I don't think you will ever regret getting treatment, but there is no way to know if you will regret not getting treatment. Keep us posted, Sue Luck mom to , DOC band graduate ----- Original Message ----- From: <crystal514@...> <Plagiocephalyegroups> Sent: Thursday, October 19, 2000 10:29 PM Subject: new member > hi, > i am new to the group and i am having some problems that maybe you > guys can help me with. last month my pediatrician diagnosed my son > with torticollis and plagiocephaly...he sent us to a surgeon who then > said that he didnt think he had torticollis so he sent us for a > physical therapy evaluation, the pt said he definately had > torticollis and plagiocephaly and that he would really benefit from > the doc band. there were other concerns with my son that my > pediatrician was not taking into consideration so we changed > pediatricians and went to a new one who told us today that he doesnt > think he has tort and that his head will round out on its own. he > actually told us that the physical therapist was crazy and we need do > nothing from here on out. my motherly instincts tell me something is > wrong, that he does have the torticollis and that his head wont round > out on its own. he has a severe deformity with his ear that to me in > no way can just fix itself. we have had so many conflicting opinions, > we dont know where to go or what do now. i feel if we just leave it > alone then this will be a mistake and my son is gonna suffer in the > long run. i am lost as to what to do next. any help would be greatly > appreciated. > > > crystal & gabriel > > > > Quote Link to comment Share on other sites More sharing options...
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