Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 Penny, Congrats on your new baby. What's his name? CT is the best for diagnosing and if they felt there may be a suture issue they would have told you then. To be straight forward, If you know that daycare will not be devoting enough time to tummy play then I would get the band. As far as it not being medically necessary, that's wrong, they have so far began determining the link( although most studies are still in the making) between plagiocephaly and hearing, vision,TMJ,feeding problems and possibly developemental delays, not to mention self esteem issues. Most peds unfortunately are uneducated about it and go by the old school standards of " it will round out " . Please look in the files, database and links section for any info you need to help you make your decision. I hope I don't sound to harsh, but I just wanted you to be aware of everything. My son Dominick is in his second Doc Band(he was severe and requires two to correct), he also had tort., Dominick was diagnosed at 5 months with a two month delay in gross motor skills( he could not even roll over either way) due mainly to his plagiocephaly( his head was too flat to allow him to move correctly on it) within two weeks of having his Doc Band he was rolling both ways. Please do some reading and help hubby understand, explain that it can continue to get worse and the earlier the treatment is started the faster and better the correction. We will be here to help and support you weather you decide to repo some more or go ahead and band. Feel free to ask any questions you have, CAROLG. --- In Plagiocephaly , " pennylac " <pennylac@y...> wrote: > I am a first time mom with a 14 week old son with torticollis (which > is under control with aggressive PT) and a flat spot that keeps > moving and changing. We had an appointment with Cranial Tech about 2 > weeks ago and they determined he was moderate to severe. I go back > and forth on whether to do the helmet or try to stick with > repositioning longer. My pediatrician seems to think it will correct > itself without a helmet. I have gone back to work and he is in > daycare but I know they aren't going to be able to do the tummy time > (pretty much all the time) that I did after his diagnosis at 8 weeks. > I knew something was wrong with his neck at 4 weeks but the doctor > didn't seem to listen to me. I just don't know what the right > decision is. Some days his head looks better, others it looks worse. > I don't know how long to wait before I go ahead with the helmet. > > How should I start? Should I go to another doctor, physical > therapist, orhtotists to get another opinion? I don't even know if > anyone has determined whether any of the sutures have grown together. > I was already to do the band and then my husband finally decided to > get involved now that it has come down to dealing with the insurance > company and is questioning the whole thing because the doctor told > him it wasn't medically necessary. I know it isn't but I don't want > him to go through life with a misshappen head. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 Penny, Congrats on your new baby. What's his name? CT is the best for diagnosing and if they felt there may be a suture issue they would have told you then. To be straight forward, If you know that daycare will not be devoting enough time to tummy play then I would get the band. As far as it not being medically necessary, that's wrong, they have so far began determining the link( although most studies are still in the making) between plagiocephaly and hearing, vision,TMJ,feeding problems and possibly developemental delays, not to mention self esteem issues. Most peds unfortunately are uneducated about it and go by the old school standards of " it will round out " . Please look in the files, database and links section for any info you need to help you make your decision. I hope I don't sound to harsh, but I just wanted you to be aware of everything. My son Dominick is in his second Doc Band(he was severe and requires two to correct), he also had tort., Dominick was diagnosed at 5 months with a two month delay in gross motor skills( he could not even roll over either way) due mainly to his plagiocephaly( his head was too flat to allow him to move correctly on it) within two weeks of having his Doc Band he was rolling both ways. Please do some reading and help hubby understand, explain that it can continue to get worse and the earlier the treatment is started the faster and better the correction. We will be here to help and support you weather you decide to repo some more or go ahead and band. Feel free to ask any questions you have, CAROLG. --- In Plagiocephaly , " pennylac " <pennylac@y...> wrote: > I am a first time mom with a 14 week old son with torticollis (which > is under control with aggressive PT) and a flat spot that keeps > moving and changing. We had an appointment with Cranial Tech about 2 > weeks ago and they determined he was moderate to severe. I go back > and forth on whether to do the helmet or try to stick with > repositioning longer. My pediatrician seems to think it will correct > itself without a helmet. I have gone back to work and he is in > daycare but I know they aren't going to be able to do the tummy time > (pretty much all the time) that I did after his diagnosis at 8 weeks. > I knew something was wrong with his neck at 4 weeks but the doctor > didn't seem to listen to me. I just don't know what the right > decision is. Some days his head looks better, others it looks worse. > I don't know how long to wait before I go ahead with the helmet. > > How should I start? Should I go to another doctor, physical > therapist, orhtotists to get another opinion? I don't even know if > anyone has determined whether any of the sutures have grown together. > I was already to do the band and then my husband finally decided to > get involved now that it has come down to dealing with the insurance > company and is questioning the whole thing because the doctor told > him it wasn't medically necessary. I know it isn't but I don't want > him to go through life with a misshappen head. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 Hi and Welcome to the group. Your son is still very young and could benefit from repo. However the tort and the evaluation of moderate to severe from Cranial Tech worry me. Tort makes repo very difficult. Moderate to severe plagio is much more difficult and time consuming to correct. Since your son is in daycare they may not be able to adhere to non-stop repo techniques so at best he may remain the same and not worsen. The other oncern I have is the flat spot keeps moving and changing. That tells me your son has a very malleable head. Meaning he can correct easily and worsen easily. Since the flatness is moving and changing I woudl assume it's not cranio. However there is a research paper that talks about how to distinguish between the two based on visual clues without xrays. Craniosynostosis 6/15/04 Distinguishing Craniosynostosis vs Plagio http://www.aafp.org/afp/20040615/2863.html Diagnosis and Management of Positional Head Deformity Identification of Positional Head Deformity and Synostotic Plagiocephaly http://www.aafp.org/afp/20030501/1953.html So what to do?? CT are the experts so I believe you can trust their evaluation. Since the ped was a little late diagnosing the tort I wouldn't doubt he would be a little late on the plagio. Now if he will write the RX for a DOC band then have him do it and go to CT. If he won't look for a ped who at least knows what plagio is and has had patients that were banded. If you would prefer to see a specialist then ask for a referral. I would research specialists (neurosurgeon, cranial facial surgeon, neurologist, plastic surgeon) in your are to determine which are pro-banding. We may have someone listed in your area in the dr database or just let us know where you are and we may have some locals or ask CT for a list of referring drs. If you are not ready to band yet set a repo deadline. It's best to get infants banded before 6 months - you get the best correction (however children are banded up to 24 months). It can take up to 2 months to get through specialists and insurance red tape before you child is actually banded so keep this in mind. Our repo files and links sections have tons of tips and ideas - even some you could share with daycare. Good luck. mom to na DOC Grad Tort Resolved South Carolina www.thefilyaws.com pennylac <pennylac@...> wrote: I am a first time mom with a 14 week old son with torticollis (which is under control with aggressive PT) and a flat spot that keeps moving and changing. We had an appointment with Cranial Tech about 2 weeks ago and they determined he was moderate to severe. I go back and forth on whether to do the helmet or try to stick with repositioning longer. My pediatrician seems to think it will correct itself without a helmet. I have gone back to work and he is in daycare but I know they aren't going to be able to do the tummy time (pretty much all the time) that I did after his diagnosis at 8 weeks. I knew something was wrong with his neck at 4 weeks but the doctor didn't seem to listen to me. I just don't know what the right decision is. Some days his head looks better, others it looks worse. I don't know how long to wait before I go ahead with the helmet. How should I start? Should I go to another doctor, physical therapist, orhtotists to get another opinion? I don't even know if anyone has determined whether any of the sutures have grown together. I was already to do the band and then my husband finally decided to get involved now that it has come down to dealing with the insurance company and is questioning the whole thing because the doctor told him it wasn't medically necessary. I know it isn't but I don't want him to go through life with a misshappen head. For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 Hi and Welcome to the group. Your son is still very young and could benefit from repo. However the tort and the evaluation of moderate to severe from Cranial Tech worry me. Tort makes repo very difficult. Moderate to severe plagio is much more difficult and time consuming to correct. Since your son is in daycare they may not be able to adhere to non-stop repo techniques so at best he may remain the same and not worsen. The other oncern I have is the flat spot keeps moving and changing. That tells me your son has a very malleable head. Meaning he can correct easily and worsen easily. Since the flatness is moving and changing I woudl assume it's not cranio. However there is a research paper that talks about how to distinguish between the two based on visual clues without xrays. Craniosynostosis 6/15/04 Distinguishing Craniosynostosis vs Plagio http://www.aafp.org/afp/20040615/2863.html Diagnosis and Management of Positional Head Deformity Identification of Positional Head Deformity and Synostotic Plagiocephaly http://www.aafp.org/afp/20030501/1953.html So what to do?? CT are the experts so I believe you can trust their evaluation. Since the ped was a little late diagnosing the tort I wouldn't doubt he would be a little late on the plagio. Now if he will write the RX for a DOC band then have him do it and go to CT. If he won't look for a ped who at least knows what plagio is and has had patients that were banded. If you would prefer to see a specialist then ask for a referral. I would research specialists (neurosurgeon, cranial facial surgeon, neurologist, plastic surgeon) in your are to determine which are pro-banding. We may have someone listed in your area in the dr database or just let us know where you are and we may have some locals or ask CT for a list of referring drs. If you are not ready to band yet set a repo deadline. It's best to get infants banded before 6 months - you get the best correction (however children are banded up to 24 months). It can take up to 2 months to get through specialists and insurance red tape before you child is actually banded so keep this in mind. Our repo files and links sections have tons of tips and ideas - even some you could share with daycare. Good luck. mom to na DOC Grad Tort Resolved South Carolina www.thefilyaws.com pennylac <pennylac@...> wrote: I am a first time mom with a 14 week old son with torticollis (which is under control with aggressive PT) and a flat spot that keeps moving and changing. We had an appointment with Cranial Tech about 2 weeks ago and they determined he was moderate to severe. I go back and forth on whether to do the helmet or try to stick with repositioning longer. My pediatrician seems to think it will correct itself without a helmet. I have gone back to work and he is in daycare but I know they aren't going to be able to do the tummy time (pretty much all the time) that I did after his diagnosis at 8 weeks. I knew something was wrong with his neck at 4 weeks but the doctor didn't seem to listen to me. I just don't know what the right decision is. Some days his head looks better, others it looks worse. I don't know how long to wait before I go ahead with the helmet. How should I start? Should I go to another doctor, physical therapist, orhtotists to get another opinion? I don't even know if anyone has determined whether any of the sutures have grown together. I was already to do the band and then my husband finally decided to get involved now that it has come down to dealing with the insurance company and is questioning the whole thing because the doctor told him it wasn't medically necessary. I know it isn't but I don't want him to go through life with a misshappen head. For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 Hi and welcome to the grp. I'm glad you found it and hope that you will be too. I see that the oterhs gave you great advice. Even though I didn't have personal experience with CT I believe that you can trust their assessment. My son was in daycare too and in my opinion I agree with you that there is no way they can keep up with aggressive repo. You son will not notice or be bothered by the band *at all*. My son was 9 mos and it didn't even phase him. In most cases it is left up to the parent. Do some soul searching and think about what *you* want to do. I think you'll come up with the best solution for you and your baby. Take care. Sue Colin F., 19 mos. STArband grad brachy Buffalo, NY --- In Plagiocephaly , " pennylac " <pennylac@y...> wrote: > I am a first time mom with a 14 week old son with torticollis (which > is under control with aggressive PT) and a flat spot that keeps > moving and changing. We had an appointment with Cranial Tech about 2 > weeks ago and they determined he was moderate to severe. I go back > and forth on whether to do the helmet or try to stick with > repositioning longer. My pediatrician seems to think it will correct > itself without a helmet. I have gone back to work and he is in > daycare but I know they aren't going to be able to do the tummy time > (pretty much all the time) that I did after his diagnosis at 8 weeks. > I knew something was wrong with his neck at 4 weeks but the doctor > didn't seem to listen to me. I just don't know what the right > decision is. Some days his head looks better, others it looks worse. > I don't know how long to wait before I go ahead with the helmet. > > How should I start? Should I go to another doctor, physical > therapist, orhtotists to get another opinion? I don't even know if > anyone has determined whether any of the sutures have grown together. > I was already to do the band and then my husband finally decided to > get involved now that it has come down to dealing with the insurance > company and is questioning the whole thing because the doctor told > him it wasn't medically necessary. I know it isn't but I don't want > him to go through life with a misshappen head. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 Hi everyone,I am new to this group. I have had MS since 1976, but still getting around. Been on disability for 2 years due to cognitive, sensory, fatigue, balance, spasms, vision, etc. I found out about LDN on internet and it took 2 months to talk my neuro into it. He had never heard of it and I had to print info and take it to him and play phone tag forever before he finally gave me the RX. I started on 8-22-05 and I am already seeing some results! I am so excited. I live in TExas and it is so HOT. I have multiple symptoms every summer. It is still just as hot, but I am actually feeling better than I did in the spring. I know it is the LDN. I have been able to cut back on my Baclofen, something that I have never been able to do. I have usually been increasing it. I just had to put my " two cents worth " in. It was so much trouble getting my dr to cooperate and I just wanted to let everyone know that it was WELL worth it! I can see things getting better and better. Take care everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 Hi What dosage are you taking?Did you experience any stiffness when starting? cu,Tom __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 ; I started 1.5 mg LDN 8/24/05, I too seem to notice some improvements such as feeling better about myself, my hand writing has improved, I'm still in a wheel chair but feeling that I will be able to walk again. I go to therapy three time a week and work out two days a week on my own, my therapist said I have good muscle tone and should walk again. My Dr just prescribed 3mgs, hope that will help, what mgs did you start at? Jim [low dose naltrexone] Just starting Hi everyone,I am new to this group. I have had MS since 1976, but still getting around. Been on disability for 2 years due to cognitive, sensory, fatigue, balance, spasms, vision, etc. I found out about LDN on internet and it took 2 months to talk my neuro into it. He had never heard of it and I had to print info and take it to him and play phone tag forever before he finally gave me the RX. I started on 8-22-05 and I am already seeing some results! I am so excited. I live in TExas and it is so HOT. I have multiple symptoms every summer. It is still just as hot, but I am actually feeling better than I did in the spring. I know it is the LDN. I have been able to cut back on my Baclofen, something that I have never been able to do. I have usually been increasing it. I just had to put my "two cents worth" in. It was so much trouble getting my dr to cooperate and I just wanted to let everyone know that it was WELL worth it! I can see things getting better and better. Take care everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 JIM, I'M KNEW TO THIS GROUP,BUT VERY INTERESTED WHEN I READ UR EMAIL.YOU C I HAVE MS AND TRANSVERSE MYELITIS.I HAVE NOT BEEN ABLE TO WALK IN 2YRS.I ALSO ONLY HAVE THE USE OF ONE HAND. I AM CURRENTLY TAKING BETASERONE FOR THE MS BUT LOOKING FOR MAYBE A MORE EFFECTIVE THERAPY.KEEP ME INFORMED ON UR PROGRESS. THANKS ANGIEJharbott <jharbott@...> wrote: ; I started 1.5 mg LDN 8/24/05, I too seem to notice some improvements such as feeling better about myself, my hand writing has improved, I'm still in a wheel chair but feeling that I will be able to walk again. I go to therapy three time a week and work out two days a week on my own, my therapist said I have good muscle tone and should walk again. My Dr just prescribed 3mgs, hope that will help, what mgs did you start at? Jim [low dose naltrexone] Just starting Hi everyone,I am new to this group. I have had MS since 1976, but still getting around. Been on disability for 2 years due to cognitive, sensory, fatigue, balance, spasms, vision, etc. I found out about LDN on internet and it took 2 months to talk my neuro into it. He had never heard of it and I had to print info and take it to him and play phone tag forever before he finally gave me the RX. I started on 8-22-05 and I am already seeing some results! I am so excited. I live in TExas and it is so HOT. I have multiple symptoms every summer. It is still just as hot, but I am actually feeling better than I did in the spring. I know it is the LDN. I have been able to cut back on my Baclofen, something that I have never been able to do. I have usually been increasing it. I just had to put my "two cents worth" in. It was so much trouble getting my dr to cooperate and I just wanted to let everyone know that it was WELL worth it! I can see things getting better and better. Take care everyone! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Hi Peggy, Welcome! Usually you'll get the band about 2 weeks after casting. At 6 months she should hopefully only have to wear the band for a few months. For therapy you'll usually do neck stretches (ear-to- shoulder and 'look to the side') and maybe play some games - like getting them to use their tort side hand more often. Even if she's only got minor torticollis, I'd be sure to be diligent about the stretches and physical therapy. My son had a very minor case (that the doctor's kept telling me was 'nothing') and without stretching until 12 months he developed an odd 'crab crawl' and all sorts of other compensatory issues that we're having to do extra physical therapy to correct (i.e. tight hip flexor on one side, tight hamstring on the other, etc.) Good luck! Sheila, mom to , 18 months, DOCband > > Hi, Sara is 6 months old my ped any everyone else kept saying her head would round out itself but it got worse. Finally got a refferal and went last week to a craniofacial reconstructive surgon we go tommorow for her casting. Also trying to setup physical therapy because they said she has Torticollis ( I don't see it). I don't really know what to expect. How long does it usually take to get the helmet after the casting? What do they do for therapy? Any advise would be great. > Thanks > Peggy > > > --------------------------------- > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Travel to find your fit. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 I'm not sure about the therapy but the helmet at least at Cranial Technologies was done 10-14 days from casting. Good luck....If you can bring someone with, a bottle or pacifier, a favorite toy (but one that can get washed as the plaster is messy). My son hated the casting but it is only 10 minutes...we are going to do the exit cast in 2 weeks. Good luck. peggy boiler <pegmarmtb@...> wrote: Hi, Sara is 6 months old my ped any everyone else kept saying her head would round out itself but it got worse. Finally got a refferal and went last week to a craniofacial reconstructive surgon we go tommorow for her casting. Also trying to setup physical therapy because they said she has Torticollis ( I don't see it). I don't really know what to expect. How long does it usually take to get the helmet after the casting? What do they do for therapy? Any advise would be great. Thanks Peggy Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. Don't get soaked. Take a quick peek at the forecast with the Search weather shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Welcome Peggy! You should get her helmet about 2 weeks after casting. The ortho will go over all that with you - but ASK QUESTIONS! At PT they usually asses the degree of tilt and then show you exercises to do at home with each diaper change. The consist of basically stretching out the tight side of the neck and stregthening the neck. I found that Luli did not like stretching and so I had to make a game of it and sneak it in when ever I could. There is a tort board here too. Torticolliskids/ Jen and Luli (15mo) Left Tort - Right Plagio - Hanger Band Grad - CA just starting Hi, Sara is 6 months old my ped any everyone else kept saying her head would round out itself but it got worse. Finally got a refferal and went last week to a craniofacial reconstructive surgon we go tommorow for her casting. Also trying to setup physical therapy because they said she has Torticollis ( I don't see it). I don't really know what to expect. How long does it usually take to get the helmet after the casting? What do they do for therapy? Any advise would be great. Thanks Peggy Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2007 Report Share Posted March 27, 2007 Thank all who responed to my message. This is a wonderful source of information. Casting at 3:00 today. They are sending me to and Fillipis. I'm not sure if they send it to be made at Crano Technologies. Never heard of this place but everyone else seem's too.I hope the casting is better than all the x-ray's the other day. Sara was not a happy camper. I will post pic's soon. This is all new to me and I'm just learning. Thank you. Peggy Michigan -- In Plagiocephaly , JenandLuli@... wrote: > > Welcome Peggy! You should get her helmet about 2 weeks after casting. The ortho will go over all that with you - but ASK QUESTIONS! At PT they usually asses the degree of tilt and then show you exercises to do at home with each diaper change. The consist of basically stretching out the tight side of the neck and stregthening the neck. I found that Luli did not like stretching and so I had to make a game of it and sneak it in when ever I could. There is a tort board here too. Torticolliskids/ > > Jen and Luli (15mo) > Left Tort - Right Plagio - Hanger Band Grad - CA > > > just starting > > > Hi, Sara is 6 months old my ped any everyone else kept saying her head would round out itself but it got worse. Finally got a refferal and went last week to a craniofacial reconstructive surgon we go tommorow for her casting. Also trying to setup physical therapy because they said she has Torticollis ( I don't see it). I don't really know what to expect. How long does it usually take to get the helmet after the casting? What do they do for therapy? Any advise would be great. > Thanks > Peggy > > > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Travel to find your fit. > > _____________________________________________________________________ ___ > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. > Quote Link to comment Share on other sites More sharing options...
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