Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Hello, I know how frustrating it is. Torticollis is so deforming on their poor little faces. I would focus like crazy on doing everything you can to get the tort resolved. My daughter had 3 helmets, and I started realizing with the second one that the helmet had to " work against " the torticollis. The torticollis is actually pulling on their heads and faces. I know she would have had a better outcome had she not had the pulling forces of the tort. I wish I had known more about tort when she was young. so, I would reposition as much as you can ( i know it is not as effective after 6 mo, but hey if you see them laying on the flat side, just give their head a little turn) Work as hard as you can on strengthening the opposite side and stretching the tort side, and look into helmet options. maybe some are cheaper. Our Hanger band in Aurora, CO was $1500. feel free to contact me at my address --twinsreims, as I don't check the boards much anymore. Thanks, Tricia Reimer In Plagiocephaly , " c_greenhalge " <cchretien@...> wrote: > > I am really not sure what to do. My 8 month son went from 7mm of > assymetry to 8mm in just two weeks. He is also has some facial > assymetry and his ears are obviously not equal at all. Our physical > therapist sent an e-mail to our pedi. and we are waiting for a > referal to the local orthotic group. Problem is I called my insurance > company today to get some information on coverage and they told me the > bands are only covered after surgery for the diagnosis of plagiocephaly. > > I know that 8mm is not as severe as a lot of children on here but to > me it is noticeable. I really don't have $3,000 to fork over for > helmet treatment. Last time I talked to my pedi. he didn't seem to be > a firm believer in the band. He did refer us to PT for the tort but > was not that concerned about the plagiocephaly and said it would get > better over time. I am not sure that he will be a good advocate to > fight the insurance company. Part of my says to just leave it > alone--it eill resolve but the other part of me says to continue to > look into our options for paying for the band as soon possible. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Hello, I know how frustrating it is. Torticollis is so deforming on their poor little faces. I would focus like crazy on doing everything you can to get the tort resolved. My daughter had 3 helmets, and I started realizing with the second one that the helmet had to " work against " the torticollis. The torticollis is actually pulling on their heads and faces. I know she would have had a better outcome had she not had the pulling forces of the tort. I wish I had known more about tort when she was young. so, I would reposition as much as you can ( i know it is not as effective after 6 mo, but hey if you see them laying on the flat side, just give their head a little turn) Work as hard as you can on strengthening the opposite side and stretching the tort side, and look into helmet options. maybe some are cheaper. Our Hanger band in Aurora, CO was $1500. feel free to contact me at my address --twinsreims, as I don't check the boards much anymore. Thanks, Tricia Reimer In Plagiocephaly , " c_greenhalge " <cchretien@...> wrote: > > I am really not sure what to do. My 8 month son went from 7mm of > assymetry to 8mm in just two weeks. He is also has some facial > assymetry and his ears are obviously not equal at all. Our physical > therapist sent an e-mail to our pedi. and we are waiting for a > referal to the local orthotic group. Problem is I called my insurance > company today to get some information on coverage and they told me the > bands are only covered after surgery for the diagnosis of plagiocephaly. > > I know that 8mm is not as severe as a lot of children on here but to > me it is noticeable. I really don't have $3,000 to fork over for > helmet treatment. Last time I talked to my pedi. he didn't seem to be > a firm believer in the band. He did refer us to PT for the tort but > was not that concerned about the plagiocephaly and said it would get > better over time. I am not sure that he will be a good advocate to > fight the insurance company. Part of my says to just leave it > alone--it eill resolve but the other part of me says to continue to > look into our options for paying for the band as soon possible. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Hello, I know how frustrating it is. Torticollis is so deforming on their poor little faces. I would focus like crazy on doing everything you can to get the tort resolved. My daughter had 3 helmets, and I started realizing with the second one that the helmet had to " work against " the torticollis. The torticollis is actually pulling on their heads and faces. I know she would have had a better outcome had she not had the pulling forces of the tort. I wish I had known more about tort when she was young. so, I would reposition as much as you can ( i know it is not as effective after 6 mo, but hey if you see them laying on the flat side, just give their head a little turn) Work as hard as you can on strengthening the opposite side and stretching the tort side, and look into helmet options. maybe some are cheaper. Our Hanger band in Aurora, CO was $1500. feel free to contact me at my address --twinsreims, as I don't check the boards much anymore. Thanks, Tricia Reimer In Plagiocephaly , " c_greenhalge " <cchretien@...> wrote: > > I am really not sure what to do. My 8 month son went from 7mm of > assymetry to 8mm in just two weeks. He is also has some facial > assymetry and his ears are obviously not equal at all. Our physical > therapist sent an e-mail to our pedi. and we are waiting for a > referal to the local orthotic group. Problem is I called my insurance > company today to get some information on coverage and they told me the > bands are only covered after surgery for the diagnosis of plagiocephaly. > > I know that 8mm is not as severe as a lot of children on here but to > me it is noticeable. I really don't have $3,000 to fork over for > helmet treatment. Last time I talked to my pedi. he didn't seem to be > a firm believer in the band. He did refer us to PT for the tort but > was not that concerned about the plagiocephaly and said it would get > better over time. I am not sure that he will be a good advocate to > fight the insurance company. Part of my says to just leave it > alone--it eill resolve but the other part of me says to continue to > look into our options for paying for the band as soon possible. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Hello, I know how frustrating it is. Torticollis is so deforming on their poor little faces. I would focus like crazy on doing everything you can to get the tort resolved. My daughter had 3 helmets, and I started realizing with the second one that the helmet had to " work against " the torticollis. The torticollis is actually pulling on their heads and faces. I know she would have had a better outcome had she not had the pulling forces of the tort. I wish I had known more about tort when she was young. so, I would reposition as much as you can ( i know it is not as effective after 6 mo, but hey if you see them laying on the flat side, just give their head a little turn) Work as hard as you can on strengthening the opposite side and stretching the tort side, and look into helmet options. maybe some are cheaper. Our Hanger band in Aurora, CO was $1500. feel free to contact me at my address --twinsreims, as I don't check the boards much anymore. Thanks, Tricia Reimer In Plagiocephaly , " c_greenhalge " <cchretien@...> wrote: > > I am really not sure what to do. My 8 month son went from 7mm of > assymetry to 8mm in just two weeks. He is also has some facial > assymetry and his ears are obviously not equal at all. Our physical > therapist sent an e-mail to our pedi. and we are waiting for a > referal to the local orthotic group. Problem is I called my insurance > company today to get some information on coverage and they told me the > bands are only covered after surgery for the diagnosis of plagiocephaly. > > I know that 8mm is not as severe as a lot of children on here but to > me it is noticeable. I really don't have $3,000 to fork over for > helmet treatment. Last time I talked to my pedi. he didn't seem to be > a firm believer in the band. He did refer us to PT for the tort but > was not that concerned about the plagiocephaly and said it would get > better over time. I am not sure that he will be a good advocate to > fight the insurance company. Part of my says to just leave it > alone--it eill resolve but the other part of me says to continue to > look into our options for paying for the band as soon possible. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Hello, I know how frustrating it is. Torticollis is so deforming on their poor little faces. I would focus like crazy on doing everything you can to get the tort resolved. My daughter had 3 helmets, and I started realizing with the second one that the helmet had to " work against " the torticollis. The torticollis is actually pulling on their heads and faces. I know she would have had a better outcome had she not had the pulling forces of the tort. I wish I had known more about tort when she was young. so, I would reposition as much as you can ( i know it is not as effective after 6 mo, but hey if you see them laying on the flat side, just give their head a little turn) Work as hard as you can on strengthening the opposite side and stretching the tort side, and look into helmet options. maybe some are cheaper. Our Hanger band in Aurora, CO was $1500. feel free to contact me at my address --twinsreims, as I don't check the boards much anymore. Thanks, Tricia Reimer In Plagiocephaly , " c_greenhalge " <cchretien@...> wrote: > > I am really not sure what to do. My 8 month son went from 7mm of > assymetry to 8mm in just two weeks. He is also has some facial > assymetry and his ears are obviously not equal at all. Our physical > therapist sent an e-mail to our pedi. and we are waiting for a > referal to the local orthotic group. Problem is I called my insurance > company today to get some information on coverage and they told me the > bands are only covered after surgery for the diagnosis of plagiocephaly. > > I know that 8mm is not as severe as a lot of children on here but to > me it is noticeable. I really don't have $3,000 to fork over for > helmet treatment. Last time I talked to my pedi. he didn't seem to be > a firm believer in the band. He did refer us to PT for the tort but > was not that concerned about the plagiocephaly and said it would get > better over time. I am not sure that he will be a good advocate to > fight the insurance company. Part of my says to just leave it > alone--it eill resolve but the other part of me says to continue to > look into our options for paying for the band as soon possible. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Hello, I know how frustrating it is. Torticollis is so deforming on their poor little faces. I would focus like crazy on doing everything you can to get the tort resolved. My daughter had 3 helmets, and I started realizing with the second one that the helmet had to " work against " the torticollis. The torticollis is actually pulling on their heads and faces. I know she would have had a better outcome had she not had the pulling forces of the tort. I wish I had known more about tort when she was young. so, I would reposition as much as you can ( i know it is not as effective after 6 mo, but hey if you see them laying on the flat side, just give their head a little turn) Work as hard as you can on strengthening the opposite side and stretching the tort side, and look into helmet options. maybe some are cheaper. Our Hanger band in Aurora, CO was $1500. feel free to contact me at my address --twinsreims, as I don't check the boards much anymore. Thanks, Tricia Reimer In Plagiocephaly , " c_greenhalge " <cchretien@...> wrote: > > I am really not sure what to do. My 8 month son went from 7mm of > assymetry to 8mm in just two weeks. He is also has some facial > assymetry and his ears are obviously not equal at all. Our physical > therapist sent an e-mail to our pedi. and we are waiting for a > referal to the local orthotic group. Problem is I called my insurance > company today to get some information on coverage and they told me the > bands are only covered after surgery for the diagnosis of plagiocephaly. > > I know that 8mm is not as severe as a lot of children on here but to > me it is noticeable. I really don't have $3,000 to fork over for > helmet treatment. Last time I talked to my pedi. he didn't seem to be > a firm believer in the band. He did refer us to PT for the tort but > was not that concerned about the plagiocephaly and said it would get > better over time. I am not sure that he will be a good advocate to > fight the insurance company. Part of my says to just leave it > alone--it eill resolve but the other part of me says to continue to > look into our options for paying for the band as soon possible. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Hello, I know how frustrating it is. Torticollis is so deforming on their poor little faces. I would focus like crazy on doing everything you can to get the tort resolved. My daughter had 3 helmets, and I started realizing with the second one that the helmet had to " work against " the torticollis. The torticollis is actually pulling on their heads and faces. I know she would have had a better outcome had she not had the pulling forces of the tort. I wish I had known more about tort when she was young. so, I would reposition as much as you can ( i know it is not as effective after 6 mo, but hey if you see them laying on the flat side, just give their head a little turn) Work as hard as you can on strengthening the opposite side and stretching the tort side, and look into helmet options. maybe some are cheaper. Our Hanger band in Aurora, CO was $1500. feel free to contact me at my address --twinsreims, as I don't check the boards much anymore. Thanks, Tricia Reimer In Plagiocephaly , " c_greenhalge " <cchretien@...> wrote: > > I am really not sure what to do. My 8 month son went from 7mm of > assymetry to 8mm in just two weeks. He is also has some facial > assymetry and his ears are obviously not equal at all. Our physical > therapist sent an e-mail to our pedi. and we are waiting for a > referal to the local orthotic group. Problem is I called my insurance > company today to get some information on coverage and they told me the > bands are only covered after surgery for the diagnosis of plagiocephaly. > > I know that 8mm is not as severe as a lot of children on here but to > me it is noticeable. I really don't have $3,000 to fork over for > helmet treatment. Last time I talked to my pedi. he didn't seem to be > a firm believer in the band. He did refer us to PT for the tort but > was not that concerned about the plagiocephaly and said it would get > better over time. I am not sure that he will be a good advocate to > fight the insurance company. Part of my says to just leave it > alone--it eill resolve but the other part of me says to continue to > look into our options for paying for the band as soon possible. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Hello, I know how frustrating it is. Torticollis is so deforming on their poor little faces. I would focus like crazy on doing everything you can to get the tort resolved. My daughter had 3 helmets, and I started realizing with the second one that the helmet had to " work against " the torticollis. The torticollis is actually pulling on their heads and faces. I know she would have had a better outcome had she not had the pulling forces of the tort. I wish I had known more about tort when she was young. so, I would reposition as much as you can ( i know it is not as effective after 6 mo, but hey if you see them laying on the flat side, just give their head a little turn) Work as hard as you can on strengthening the opposite side and stretching the tort side, and look into helmet options. maybe some are cheaper. Our Hanger band in Aurora, CO was $1500. feel free to contact me at my address --twinsreims, as I don't check the boards much anymore. Thanks, Tricia Reimer In Plagiocephaly , " c_greenhalge " <cchretien@...> wrote: > > I am really not sure what to do. My 8 month son went from 7mm of > assymetry to 8mm in just two weeks. He is also has some facial > assymetry and his ears are obviously not equal at all. Our physical > therapist sent an e-mail to our pedi. and we are waiting for a > referal to the local orthotic group. Problem is I called my insurance > company today to get some information on coverage and they told me the > bands are only covered after surgery for the diagnosis of plagiocephaly. > > I know that 8mm is not as severe as a lot of children on here but to > me it is noticeable. I really don't have $3,000 to fork over for > helmet treatment. Last time I talked to my pedi. he didn't seem to be > a firm believer in the band. He did refer us to PT for the tort but > was not that concerned about the plagiocephaly and said it would get > better over time. I am not sure that he will be a good advocate to > fight the insurance company. Part of my says to just leave it > alone--it eill resolve but the other part of me says to continue to > look into our options for paying for the band as soon possible. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Hi Kate, Not sure what kind of specialist you have, but neurosurgeons aren't that pro-banding. They often only care if the brain is healthy - even if the head is misshapen. Cranio facial plastic surgeons tend to be more pro-banding from what I've read here. You can get the Rx from any doctor, so if your ped will write it that works too. I wouldn't wait any longer than needed. Although he'll continue to grow it will slow and starting as early as possible is best if you know a band is needed. -christine sydney, 3 yrs, starband grad > > Hello, > > I posted on here a few months ago about my son Connor. He is now 7 > months old. He has plagio and missaligned ears. His torticollis is > much better now, most of his tilting now is due to habit and since he's > rolling now he sleeps on his belly a lot. We've been doing repo since > he was 2 months and his ear assymetry has not changed one bit. The > flat area is a little better as is the forehead bossing but I can't get > our specialist to prescribe the helmet! We see Dr. sey here in > PA who was recomended to me and I was a bit surprised. Last visit he > basically said if by 8 months there is no improvement he'll probably > recomend helmeting..but I feel why wait this long? I did move our > appointment up to next week and am hoping I can get the script. Our PT > for his tort really feels he needs one, and I do mainly because of his > ears. I don't have measurements but to me they seem to be 1/2 inch > difference from each other, one more forward but thats just by eye... > Just had to vent my frustration and hope we can get this taken care of!! > > Kate > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Thanks for that! At most hospitals, there are patient advocates who can also help - they've helped me enormously in the past when dealing with (or trying to deal with) a rude, condescending doctor. Nola Chris In a message dated 9/3/2009 3:55:05 P.M. Central Daylight Time, gary@... writes: and that he won't always be allowed to get away with doctor as God delusions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 You can report him to the state medical board for negligence. Be sure to ask for your records first. You are probably already written up as noncompliant and difficult to work with. You don't want the file sanitized. The negligence is failure to understand what kind of drug naltrexone is, therefore putting you and others in potential danger and at risk for substandard care. In addition he verbally abused you, told you what you can and cannot do on your own, thus disempowering you and violating your rights as a patient (see Patient Bill of Rights). He may have also violated some of your civil rights. This will not accomplish anything in terms of his license because he is following accepted medical practices (which is what physicians are required to do and no more). However, it will give him a heads up that he isn't allowed to patronize patients, and he has a responsibility to know what classification a drug comes under and that he won't always be allowed to get away with doctor as God delusions. Filing complaints is a powerful and underused method of controlling doctors. However it should not be used for simple disagreements. Consumer discretion advised. Advantage: It moves you from frustrated to empowered. The power discrepancy between doctors and patients is huge and anything that can be done to reduce it is good. I notice it is more often seen with women patients..although it doesn't matter if the doctor is male or female. I have asked for - and received - refunds from doctors. I wish more people would do this also. > > Just got back from a visit to my neuro. As I anticipated, he would have nothing to do with prescribing LDN. Told me I'd be playing with fire if I did that. I went armed with various reports I'd printed out by doctors about their use of naltrexone, he wouldn't even look at them. He said he knew all about naltrexone, said " IT'S A NARCOTIC, WHY WOULD YOU WANT TO TAKE THAT? " that's how much he knows about naltrexone! Told me to stay off the internet and stop looking things up on my own like I'm not intelligent enough to pull together information from various sources and disseminate through it all. Needless to say, I will be looking for another neurologist! Anyone know a good one in Kentucky?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Excellent, thanks for posting. From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of urbanlives Sent: Thursday, September 03, 2009 1:25 PM low dose naltrexone Subject: [low dose naltrexone] Re: Frustrated! You can report him to the state medical board for negligence. Be sure to ask for your records first. You are probably already written up as noncompliant and difficult to work with. You don't want the file sanitized. The negligence is failure to understand what kind of drug naltrexone is, therefore putting you and others in potential danger and at risk for substandard care. In addition he verbally abused you, told you what you can and cannot do on your own, thus disempowering you and violating your rights as a patient (see Patient Bill of Rights). He may have also violated some of your civil rights. This will not accomplish anything in terms of his license because he is following accepted medical practices (which is what physicians are required to do and no more). However, it will give him a heads up that he isn't allowed to patronize patients, and he has a responsibility to know what classification a drug comes under and that he won't always be allowed to get away with doctor as God delusions. Filing complaints is a powerful and underused method of controlling doctors. However it should not be used for simple disagreements. Consumer discretion advised. Advantage: It moves you from frustrated to empowered. The power discrepancy between doctors and patients is huge and anything that can be done to reduce it is good. I notice it is more often seen with women patients..although it doesn't matter if the doctor is male or female. I have asked for - and received - refunds from doctors. I wish more people would do this also. > > Just got back from a visit to my neuro. As I anticipated, he would have nothing to do with prescribing LDN. Told me I'd be playing with fire if I did that. I went armed with various reports I'd printed out by doctors about their use of naltrexone, he wouldn't even look at them. He said he knew all about naltrexone, said " IT'S A NARCOTIC, WHY WOULD YOU WANT TO TAKE THAT? " that's how much he knows about naltrexone! Told me to stay off the internet and stop looking things up on my own like I'm not intelligent enough to pull together information from various sources and disseminate through it all. Needless to say, I will be looking for another neurologist! Anyone know a good one in Kentucky?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Has anyone had any experience with ldn for pets? And can it be purchased online? smalk50@... wrote: >Thanks for that! At most hospitals, there are patient advocates who can >also help - they've helped me enormously in the past when dealing with (or >trying to deal with) a rude, condescending doctor. > > >Nola Chris > > > >In a message dated 9/3/2009 3:55:05 P.M. Central Daylight Time, >gary@... writes: > >and that he won't always be allowed to get away with doctor as God >delusions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 i am giving it to both my dogs right now. one dog has had a long history of allergies, ear infections etc and when i give him ldn he seems to do better. The other is my old golden Casey who recently was diagnosed with very aggressive cancer called peripheral nerve sheath sarcoma and has surgery last week. margins were not as clean as they thought-this cancer is so fast growing that in the five days between the cat scan and the surgery it changed shape. as soon as he came home - (he came home on tramadol and rimadyl) i started him on 1.5 mg of ldn and he tolerated it fine about four days later i upped it to 3 mg. we went back for a dressing check today and the surgeon could not get over how well he was doing (the funny not hahaha funny but you know what i mean is dogs with cancer have no idea they have cancer and casey is a very calm happy dog anyway ) but he is doing great.cyndiOn Sep 3, 2009, at 6:12 PM, derek sargent wrote:Has anyone had any experience with ldn for pets? And can it be purchased online?smalk50aol wrote:>Thanks for that! At most hospitals, there are patient advocates who can >also help - they've helped me enormously in the past when dealing with (or >trying to deal with) a rude, condescending doctor.> > >Nola Chris> > > >In a message dated 9/3/2009 3:55:05 P.M. Central Daylight Time, >garyneo-tech writes:>>and that he won't always be allowed to get away with doctor as God >delusions. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2010 Report Share Posted December 29, 2010 For the past month, I had been laying in bed in pain with lack of energy. After a trip to the Cleveland Clinic, the Doctor there recommended Rituxan. My Rheumy agreed to it. I had my first 1/2 of the dose 1 week ago, and I go back next monday for the second half. Yesterday was the first day in a while, where I had energy, and though my joints hurt, I could move. This was pain I could function with. So...with this new found energy, I decided I was going to clean my house. I sorted and organized my kids toys. I must have gone up and down the steps more than 20 times to drop stuff off in their rooms. I felt wonderful! I had accomplished something! I felt normal! Then around 6pm (about the time my joints start up again), I started to hurt, and I had no energy left. I woke up this morning with my usual joint pain, and now I have no energy. I have been laying in bed all day. I hope that this one day was a look at my future, and that I just happened to over-do it. So, here's my question, how do you pace yourself to not over-do it, on good days? Missie- PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2010 Report Share Posted December 29, 2010 On good days, I have learned to do what is most important to me and take it slow. Then take breaks and see what I may or may not be able to do as the day continues. I rest a lot in between and if I start hurting at all then its time to stop. I too have little ones and so I feel for you. Its hard work without the RA. It just makes us special and stronger. You will get the hang of it and keep asking questions. This group always has an answer. > So, here's my question, how do you pace yourself to not over-do it, on good days? > Missie- PA > Quote Link to comment Share on other sites More sharing options...
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