Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Hello , We have many kids that have started therapy later than this, and have received exellent correction. I just think that the docs/orthos shy away from giving guarantees. It is better to say that correction will not be as good, and then it be better, than to promise a parent something that they can't give. Let us know how the fitting goes. Sandy Willow's Mom --- In Plagiocephaly , " s_rad1 " <s_radlinski@h...> wrote: > > Hello. Today my 8 1/2 month old son was evaluated for a STARband. He > will get his helmet in 2 weeks. He has SEVERE right-sided > plagiocephaly. Because of his age we have been told that we may not > get total correction with the helmet. Has anyone else had experience > with starting helmet therapy at this age and what kind of results did > you see?? > > Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Hello , We have many kids that have started therapy later than this, and have received exellent correction. I just think that the docs/orthos shy away from giving guarantees. It is better to say that correction will not be as good, and then it be better, than to promise a parent something that they can't give. Let us know how the fitting goes. Sandy Willow's Mom --- In Plagiocephaly , " s_rad1 " <s_radlinski@h...> wrote: > > Hello. Today my 8 1/2 month old son was evaluated for a STARband. He > will get his helmet in 2 weeks. He has SEVERE right-sided > plagiocephaly. Because of his age we have been told that we may not > get total correction with the helmet. Has anyone else had experience > with starting helmet therapy at this age and what kind of results did > you see?? > > Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Hi ! Are you Mark's wife? And Zero's mom? Or am I confused.... Anyway, welcome! Maralee ( ) new Hello. I'm new to this group, sort of. My husband joined some time ago, and I've enjoyed reading the posts and many communications with members of this group. I decided it was time to join myself! We have a 19 year old son who is an engineering student at Purdue. He has asperger's autism, and he has come such a long way from his diagnosis in 2nd grade. There is hope. I probably won't post much, but I enjoy reading about your children. Thank you for the opportunity to become an " official " member of this group. in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Oooooohhh. do we now know that Stepfordville is in Michigan ? lol Well, , if you are and if you aren't Mark's wife: WELCOME to the group F " When the power of love overcomes the love of power the world will know peace. " -- Jimi Hendrix ( ) new Hello. I'm new to this group, sort of. My husband joined some time ago, and I've enjoyed reading the posts and many communications with members of this group. I decided it was time to join myself! We have a 19 year old son who is an engineering student at Purdue. He has asperger's autism, and he has come such a long way from his diagnosis in 2nd grade. There is hope. I probably won't post much, but I enjoy reading about your children. Thank you for the opportunity to become an " official " member of this group. in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 mom2livonia <ssweetman@...> wrote: Hello. I'm new to this group, sort of. My husband joined some time ago, and I've enjoyed reading the posts and many communications with members of this group. I decided it was time to join myself! We have a 19 year old son who is an engineering student at Purdue. He has asperger's autism, and he has come such a long way from his diagnosis in 2nd grade. There is hope. I probably won't post much, but I enjoy reading about your children. Thank you for the opportunity to become an " official " member of this group. in Michigan Welcome ! Don't be a lurker too often - it would be fun to hear about your son. Roxanna Look alive. Here comes a buzzard. -- Pogo __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Kirsten, There are many studies being done on plagio left untreated, there is a risk of TMJ, ear infections, hearing problems, feeding problems, vision problems, and of course low self esteem issues, but most of the research is still being done. If you would like to get a clear view you can go to the olderplagio site and talk with the moms there, these are kids that have not been treated. CAROLG --- In Plagiocephaly , " kirstendavey " <Melkirsten@a...> wrote: > Thanks for the great info. My 3mo has Plagio/Tort. Right now we are > doing Repo and PT. What happens if this goes untreated? > Kirsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Kirsten, There are many studies being done on plagio left untreated, there is a risk of TMJ, ear infections, hearing problems, feeding problems, vision problems, and of course low self esteem issues, but most of the research is still being done. If you would like to get a clear view you can go to the olderplagio site and talk with the moms there, these are kids that have not been treated. CAROLG --- In Plagiocephaly , " kirstendavey " <Melkirsten@a...> wrote: > Thanks for the great info. My 3mo has Plagio/Tort. Right now we are > doing Repo and PT. What happens if this goes untreated? > Kirsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Hi Kirsten, Welcome to the group. HOw is the repo going? How long have you been doing it? Have you seen improvement? How severe is your baby? How are you assessing improvement? As far as untreated plagio, like Carol mentioned, there are many conditions that doctors think may be long term effects. However, there isn't really the research out there to know anything for sure. Aside from what Carol mentioned, you also have to be aware of the more cosmetic related issues like teasing if the plagio is noticable. There can also be practical issues related to glasses, sunglasses, bike and sport helmets fitting. Good luck w/your repo. , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com > Thanks for the great info. My 3mo has Plagio/Tort. Right now we are > doing Repo and PT. What happens if this goes untreated? > Kirsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Hi Kirsten, Welcome to the group. HOw is the repo going? How long have you been doing it? Have you seen improvement? How severe is your baby? How are you assessing improvement? As far as untreated plagio, like Carol mentioned, there are many conditions that doctors think may be long term effects. However, there isn't really the research out there to know anything for sure. Aside from what Carol mentioned, you also have to be aware of the more cosmetic related issues like teasing if the plagio is noticable. There can also be practical issues related to glasses, sunglasses, bike and sport helmets fitting. Good luck w/your repo. , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com > Thanks for the great info. My 3mo has Plagio/Tort. Right now we are > doing Repo and PT. What happens if this goes untreated? > Kirsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 hi carol its frances.. the CT IS basically taking thier time for the band.. everytime i call they still havent processed the insurance part.. im going to call again today.. anyway my querstionis if i decide to do this .. if i want it off before the time its suppossed to be on.. can i request it off or will they give me a hard time.. if i see progress can i have it taken off.. also ive heard alot of people say they did band and never saw much of a difference.. no rounding out or anything and they felt it was a waste.. do you think so.. should i go ahead and take a chance..>>?? frances"Carol G." <GATTVA@...> wrote: Kirsten,There are many studies being done on plagio left untreated, there is a risk of TMJ, ear infections, hearing problems, feeding problems, vision problems, and of course low self esteem issues, but most of the research is still being done. If you would like to get a clear view you can go to the olderplagio site and talk with the moms there, these are kids that have not been treated. CAROLG> Thanks for the great info. My 3mo has Plagio/Tort. Right now we are > doing Repo and PT. What happens if this goes untreated? > KirstenFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 hi carol its frances.. the CT IS basically taking thier time for the band.. everytime i call they still havent processed the insurance part.. im going to call again today.. anyway my querstionis if i decide to do this .. if i want it off before the time its suppossed to be on.. can i request it off or will they give me a hard time.. if i see progress can i have it taken off.. also ive heard alot of people say they did band and never saw much of a difference.. no rounding out or anything and they felt it was a waste.. do you think so.. should i go ahead and take a chance..>>?? frances"Carol G." <GATTVA@...> wrote: Kirsten,There are many studies being done on plagio left untreated, there is a risk of TMJ, ear infections, hearing problems, feeding problems, vision problems, and of course low self esteem issues, but most of the research is still being done. If you would like to get a clear view you can go to the olderplagio site and talk with the moms there, these are kids that have not been treated. CAROLG> Thanks for the great info. My 3mo has Plagio/Tort. Right now we are > doing Repo and PT. What happens if this goes untreated? > KirstenFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Carol & Kirsten, From what I have read, if it is plagio without facial asymetry, the only concern is cosmetic... and thus, self esteem issues depending on the child. If the plagio also has facial asym - then all the other things could be issues as well. Most say though that the "associated risks" aren't conclusive and could occur in the child even if plagio was not present. As you said Carol, the research is still being done. Good luck! Charalet Mom to J 3 unresolved plagio Mom to D 5mo Re: new Kirsten,There are many studies being done on plagio left untreated, there is a risk of TMJ, ear infections, hearing problems, feeding problems, vision problems, and of course low self esteem issues, but most of the research is still being done. If you would like to get a clear view you can go to the olderplagio site and talk with the moms there, these are kids that have not been treated. CAROLG> Thanks for the great info. My 3mo has Plagio/Tort. Right now we are > doing Repo and PT. What happens if this goes untreated? > KirstenFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Carol & Kirsten, From what I have read, if it is plagio without facial asymetry, the only concern is cosmetic... and thus, self esteem issues depending on the child. If the plagio also has facial asym - then all the other things could be issues as well. Most say though that the "associated risks" aren't conclusive and could occur in the child even if plagio was not present. As you said Carol, the research is still being done. Good luck! Charalet Mom to J 3 unresolved plagio Mom to D 5mo Re: new Kirsten,There are many studies being done on plagio left untreated, there is a risk of TMJ, ear infections, hearing problems, feeding problems, vision problems, and of course low self esteem issues, but most of the research is still being done. If you would like to get a clear view you can go to the olderplagio site and talk with the moms there, these are kids that have not been treated. CAROLG> Thanks for the great info. My 3mo has Plagio/Tort. Right now we are > doing Repo and PT. What happens if this goes untreated? > KirstenFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Kirsten, it really depends on the severity. the more severe the more possible issues later. common medical concerns are: TMJ, migraines, chronic ear infections, eye focusing issues. common life concerns are fitting glasses or sunglasses, bike helmets, other sports helmets, psychologial impact of being different. Cranial Tech has some self assessment forms on their website www.cranialtech.com mom to na DOC Grad www.thefilyaws.com kirstendavey <Melkirsten@...> wrote: Thanks for the great info. My 3mo has Plagio/Tort. Right now we are doing Repo and PT. What happens if this goes untreated? Kirsten For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Kirsten, it really depends on the severity. the more severe the more possible issues later. common medical concerns are: TMJ, migraines, chronic ear infections, eye focusing issues. common life concerns are fitting glasses or sunglasses, bike helmets, other sports helmets, psychologial impact of being different. Cranial Tech has some self assessment forms on their website www.cranialtech.com mom to na DOC Grad www.thefilyaws.com kirstendavey <Melkirsten@...> wrote: Thanks for the great info. My 3mo has Plagio/Tort. Right now we are doing Repo and PT. What happens if this goes untreated? Kirsten For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 I am glad you appreciate my participation. This has been a yuck process for me since there is not much we can do at this point. I hope I help people on the younger plagio board keep it all in perspective. I know that the Torti board helps me keep the unresolved plagio in perspective. Also, I have a tendency (especially on line when I can't read a persons body language) to come off as harsh and direct. If I come off offensive, please let me know. My hearts desire is to be helpful not a "crank" Anyway - have a good day. Thanks again. Charalet Mom to J, 3yo unresolved plagio Mom to D, 5mo Auntie to E, 9mo torti, plagio, starband 3/05 Oregon Re: new Charalet,Thank you, I will try to make that more clear in my future posts. I love that you participate on this board and help us all,thank you. CAROLG> > Thanks for the great info. My 3mo has Plagio/Tort. Right now we > are > > doing Repo and PT. What happens if this goes untreated? > > Kirsten> > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Hi Crystal, welcome. I see, and many others in this group a Dr Hendriks Whitman in Warren, NJ. He is terrific, just wonderful and well versed in the AP!! We drive from Cincinnati Ohio yearly to see him!! he is brilliant!! Hope this helps, Debbie rheumatic New > Hi everyone, > > > I am new to group , newly diagnosed Lupus, after many years. I was wondering if everyone might write a quick note on success or non success with their AP protocol, and if anyone knows a doctor in CT area using this protocol. > > > thanks > crystal > > > --------------------------------- > Discover > Stay in touch with email, IM, photo sharing & more. Check it out! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Yikes! I hate to hear that you're having a bit of trouble already! Could you please post some pictures of him in the helmet so that we could take a look to see if there seems to be an obvious fit problem?! That would be pretty helpful for us to see what you are talking about, then maybe we could help! Lacy Waydon's mom 8.5 months DOCband 2 weeks --- In Plagiocephaly , " mcheval6 " <actionairhvac@m...> wrote: > I am new - just picked up my son's helmet yesterday - I am wondering > if everyone else's helmet seems like it is not made right - I am so > upset with the fact that it cost me a good amount and he is probably > going to need two - but the ear part was way off and now there is a > gaping hole - it is rubbing on his cheeks and the back seem very > crooked - they did the head scan 4 times - I would think it would have > fit a little better! Granted I will be going for adjustments quite > often as he grows - he is 5.5 months old - he was 5 weeks premature > and he has a twin sister. for a little history. My husband and I are > ready to smash the thing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Yikes! I hate to hear that you're having a bit of trouble already! Could you please post some pictures of him in the helmet so that we could take a look to see if there seems to be an obvious fit problem?! That would be pretty helpful for us to see what you are talking about, then maybe we could help! Lacy Waydon's mom 8.5 months DOCband 2 weeks --- In Plagiocephaly , " mcheval6 " <actionairhvac@m...> wrote: > I am new - just picked up my son's helmet yesterday - I am wondering > if everyone else's helmet seems like it is not made right - I am so > upset with the fact that it cost me a good amount and he is probably > going to need two - but the ear part was way off and now there is a > gaping hole - it is rubbing on his cheeks and the back seem very > crooked - they did the head scan 4 times - I would think it would have > fit a little better! Granted I will be going for adjustments quite > often as he grows - he is 5.5 months old - he was 5 weeks premature > and he has a twin sister. for a little history. My husband and I are > ready to smash the thing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Hi there Initially bands don't always fit 'well' as in snugly to the head as they have to leave growing room for the flat spot so it often seems a bit wobbly or crooked for this reason. Also if bands were made really tight early on, they would be outgrown immediately. So some shifting and wobbliness is to be expected, especially with more severe plagio as there are less holding places. You often have to replace the helmet in the right position after sleep in the early days or if they are rolling about as it does shift- up to 1 inch is ok as long as it goes back easily. Having said that, there are a few key signs of problems which you do need to return to your ortho to sort out- if the ears are actually squashed and not just when the band has shifted a little this needs adjusting, if it moves more than 1 inch and if it is causing red patches that last more than one hour when the band is off- these all are fit issues which need to be sorted out immediately. It can be really hard to know if a band is fitted correctly, as like I say, they do not fit like a glove as they represent what the head will become with gaps for the flat bits, not a perfect mould of the head. That said, if you are getting angry sore patches that do not fade within an hour or if it is actually covering the ear, you need to return and get these sorted asap. I would call the ortho and tell them of the problems you are having. Often babies do have a couple of adjustments early on to get the fit right, so don't be afraid to go back and ask for a refitting asap- sometimes it's only when the helmet is worn that it becomes clear that it needs adjusting. Good luck and let us know how you get along Hannah (mum to Lucia, London, UK) Cranio grad > > I am new - just picked up my son's helmet yesterday - I am wondering > > if everyone else's helmet seems like it is not made right - I am so > > upset with the fact that it cost me a good amount and he is probably > > going to need two - but the ear part was way off and now there is a > > gaping hole - it is rubbing on his cheeks and the back seem very > > crooked - they did the head scan 4 times - I would think it would have > > fit a little better! Granted I will be going for adjustments quite > > often as he grows - he is 5.5 months old - he was 5 weeks premature > > and he has a twin sister. for a little history. My husband and I are > > ready to smash the thing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Hi there Initially bands don't always fit 'well' as in snugly to the head as they have to leave growing room for the flat spot so it often seems a bit wobbly or crooked for this reason. Also if bands were made really tight early on, they would be outgrown immediately. So some shifting and wobbliness is to be expected, especially with more severe plagio as there are less holding places. You often have to replace the helmet in the right position after sleep in the early days or if they are rolling about as it does shift- up to 1 inch is ok as long as it goes back easily. Having said that, there are a few key signs of problems which you do need to return to your ortho to sort out- if the ears are actually squashed and not just when the band has shifted a little this needs adjusting, if it moves more than 1 inch and if it is causing red patches that last more than one hour when the band is off- these all are fit issues which need to be sorted out immediately. It can be really hard to know if a band is fitted correctly, as like I say, they do not fit like a glove as they represent what the head will become with gaps for the flat bits, not a perfect mould of the head. That said, if you are getting angry sore patches that do not fade within an hour or if it is actually covering the ear, you need to return and get these sorted asap. I would call the ortho and tell them of the problems you are having. Often babies do have a couple of adjustments early on to get the fit right, so don't be afraid to go back and ask for a refitting asap- sometimes it's only when the helmet is worn that it becomes clear that it needs adjusting. Good luck and let us know how you get along Hannah (mum to Lucia, London, UK) Cranio grad > > I am new - just picked up my son's helmet yesterday - I am wondering > > if everyone else's helmet seems like it is not made right - I am so > > upset with the fact that it cost me a good amount and he is probably > > going to need two - but the ear part was way off and now there is a > > gaping hole - it is rubbing on his cheeks and the back seem very > > crooked - they did the head scan 4 times - I would think it would have > > fit a little better! Granted I will be going for adjustments quite > > often as he grows - he is 5.5 months old - he was 5 weeks premature > > and he has a twin sister. for a little history. My husband and I are > > ready to smash the thing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 I am so sorry to hear that you are having a rough start. I agree with what Christie has already told you and yes a picture would be helpful. Has your ortho listened to your concerns and are they taking action to correct the issues to your satisfaction? CAROLG --- In Plagiocephaly , " mcheval6 " <actionairhvac@m...> wrote: > I am new - just picked up my son's helmet yesterday - I am wondering > if everyone else's helmet seems like it is not made right - I am so > upset with the fact that it cost me a good amount and he is probably > going to need two - but the ear part was way off and now there is a > gaping hole - it is rubbing on his cheeks and the back seem very > crooked - they did the head scan 4 times - I would think it would have > fit a little better! Granted I will be going for adjustments quite > often as he grows - he is 5.5 months old - he was 5 weeks premature > and he has a twin sister. for a little history. My husband and I are > ready to smash the thing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 I am so sorry to hear that you are having a rough start. I agree with what Christie has already told you and yes a picture would be helpful. Has your ortho listened to your concerns and are they taking action to correct the issues to your satisfaction? CAROLG --- In Plagiocephaly , " mcheval6 " <actionairhvac@m...> wrote: > I am new - just picked up my son's helmet yesterday - I am wondering > if everyone else's helmet seems like it is not made right - I am so > upset with the fact that it cost me a good amount and he is probably > going to need two - but the ear part was way off and now there is a > gaping hole - it is rubbing on his cheeks and the back seem very > crooked - they did the head scan 4 times - I would think it would have > fit a little better! Granted I will be going for adjustments quite > often as he grows - he is 5.5 months old - he was 5 weeks premature > and he has a twin sister. for a little history. My husband and I are > ready to smash the thing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Hi, I'm so sorry you're going through this. I agree w/everything you've already been told. Keep us posted. --- In Plagiocephaly , " mcheval6 " <actionairhvac@m...> wrote: > I am new - just picked up my son's helmet yesterday - I am wondering > if everyone else's helmet seems like it is not made right - I am so > upset with the fact that it cost me a good amount and he is probably > going to need two - but the ear part was way off and now there is a > gaping hole - it is rubbing on his cheeks and the back seem very > crooked - they did the head scan 4 times - I would think it would have > fit a little better! Granted I will be going for adjustments quite > often as he grows - he is 5.5 months old - he was 5 weeks premature > and he has a twin sister. for a little history. My husband and I are > ready to smash the thing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Hi, I'm so sorry you're going through this. I agree w/everything you've already been told. Keep us posted. --- In Plagiocephaly , " mcheval6 " <actionairhvac@m...> wrote: > I am new - just picked up my son's helmet yesterday - I am wondering > if everyone else's helmet seems like it is not made right - I am so > upset with the fact that it cost me a good amount and he is probably > going to need two - but the ear part was way off and now there is a > gaping hole - it is rubbing on his cheeks and the back seem very > crooked - they did the head scan 4 times - I would think it would have > fit a little better! Granted I will be going for adjustments quite > often as he grows - he is 5.5 months old - he was 5 weeks premature > and he has a twin sister. for a little history. My husband and I are > ready to smash the thing! Quote Link to comment Share on other sites More sharing options...
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