Right board? (Torticollis & helmet) — The Bump
Special Needs

Right board? (Torticollis & helmet)

Hello, I'm not sure if this is the right board for me or not. My daughter has mild/severe infantile Torticollis. I'm just trying to find some other mom's who have/are dealing with the same thing. We have had her in PT since she was 3mo. Since then the turning of her head/neck has gotten MUCH better to the point where she almost has no issues or troubles with the turning of her head. The tilt of her head however, has gotten worse and so has the shape of her head (not by much) and her facial symmetry. 

She has gone from only doing PT every 2 weeks to going almost every week. At her last visit I asked the therapist what she thought a helmet would do for her and she said it would correct her facial muscles so her jaw is aligned and her muscles don't look droopy on the one side but she said it would do nothing for the tilt of her head. And she added that her head shape isn't off enough for insurance to cover it (she has no idea what insurance we have though) so tomorrow I am going to be asking for her to refer us for a second opinion to the Pediatric Specialties department. I'm nervous but with all the research I can find the helmet will help her a lot and correct a lot of issues that therapy will not.

Any other moms ever been in this situation or know someone who has? I only know of 1, possibly 2 moms who have LO's that had helmets and had Torticollis. Thanks :) 

[IMG]http://i47.tinypic.com/9s8qr8.jpg[/IMG]
Aubrey Josephine born on 5/18/2012 at 10:57am.

Re: Right board? (Torticollis & helmet)

  • DD does not have Torticollis, however I can tell you some things about the helmet.  My insurance paid for it 100% - all you need to do is get a "letter of medical necessity" from your doctor.  Without that, we wouldn't have been covered.  We also went to 2 doctors since the first didn't give us one.  We were told that the best time to get it is between 4-5 months, since the sutures in her head were not fully formed.  We got hers at 8-9 months and it still worked wonders.

    The helmet was a very good decision for us.  Not only did it help DD's head shape, it aligned everything from her jaw to her ears perfectly.  She only had to wear it for 2 months and the results were more than we hoped for.

    Good luck with everything.  I'm sure other parents will reply that have dealt with your situation.

    [IMG]http://i270.photobucket.com/albums/jj99/ally81698/2-2-1.jpg[/IMG]
  • My son did have torticollis when I adopted him at 4 months old.  I was actually able to work with him at home and it resolved within a few weeks, it was mild.  I have had several friends who had helmets and if there is a "letter of medical necessity" provided by your doc, it should be covered.
  • Loading the player...
  • Ds had pretty severe torticollis that actually wasn't muscular but neurological, so it would come and go and switch sides (PT had no effect!).  So that, plus lower muscle tone and delayed gross motor skills, meant that a helmet was in his future. Since I have Tricare (through military), they don't cover helmets at all. We did Cranial Tech for the doc band and they just offered a lower rate. Ds outgrew it in 6 weeks and they recommended a second one (same price) but at that point we saw tons of improvement, he was off of his back more, and we just didn't think it was necessary. That was from 7.5-9 months old. Now at almost 2 yrs, his head looks great. So while I'm glad we did the first one, but am also glad we held off on the second. You can go to cranial tech for a free evaluation to see if it's something you want to pursue. In terms of what insurance will cover, it depends on your insurance company and what they will and will not approve. I would call them and ask what the requirements are to have it covered (if they cover at all). Do they have specific requirements in terms of how many standard deviations off the measurements are from norm, or do they require just a physician's prescription (that's all most that cover would need)? In general, I would say that if it will be a while before the tort is corrected and/or she's off her back, I'd go for the helmet to help ensure a better shape. However, most times this does correct on its own over time. It's really a matter of what brings you more peace of mind.

    image Lilypie Premature Baby tickers image Lilypie Premature Baby tickers
  • DD had a helmet from 9-14 months - yes a late start; but had a "wait and see" pedi at the time who was watching it from birth. Luckily I was better late than never with the push - I went straight to an orthotics place who had starband, got her measured and had a letter of medical necessity. They worded it as because of her cheek/ear asymmetry she was mod-severe plagio. The helmet worked great! Also a too late metatopic ridge, but I think only I notice that.

    Looking back at pics, a tort kid on the right. No therapy there, but will be looking at muscle tone/neuro soon. She tenses her neck muscles when doing anything that takes strength or concentration. Me (mito mom) does too ;)

  • Thanks ladies! We saw her PT today and had her head measured again and it went from .6cm to 1cm difference in just a month. I told her I wanted the helmet because of her facial asymmetry and her head shape worsening and she said she thinks it's a good idea and that it is a necessity. I called her primary care doc to get an RX for the helmet and as soon as we get that we can get an appointment with the Orthodics dept and get her fitted for a helmet. We have state insurance so I think with just an RX from her doc it should be covered 100%. If not we will fight it and see if we can get it covered. 

    Her PT said she would do the referral for us but she would have to do a neuro referral and  the doc there won't do helmets after 6mo of age. Which is very dumb because even she said that research has proven that as long as it's within a year of age that you start the helmet there will be improvement and we wanted to go the therapy route first to see if that would help. Today she got her to do FULL ROM!! with her turning of her head. First time ever! Then at the end of the session she did it on her own! The stretches seem to only help with the turning of her head and very slightly with the tilt. I'm prepared to be working on the stretches for a very long time to correct her tilt but I'm excited to get the helmet and get her face, ears, and head shape corrected before it's too late. 

    I'm so glad I found some other mom's to talk to about this because the only other person I know of that has a son that had a helmet is in my BMB and she lives in CA and I'm in WI.  

    [IMG]http://i47.tinypic.com/9s8qr8.jpg[/IMG]
    Aubrey Josephine born on 5/18/2012 at 10:57am.
  • My DS had torticollis and mod-severe plagio, he wore a helmet for 10 weeks beginning at 5.5 months. His head is near perfect now - perfect enough for me :) I hated the helmet, but he adapted quickly and it never seemed to bother him. Winter is a great time for it, they can get quite sweaty wearing it.

     I'm also in WI, we got his helmet and PT services (for the tort) through Mayo in Rochester, MN, about a two hour drive.

     GL!

     

    Lilypie - (vulX)

     

    image

    Lilypie Kids Birthday tickers

  • My DS (now 3) was dx with moderate torticollis at 2 months and brachycephaly at the same time. One of the pediatricians in the group was very proactive re: the tort but felt the flatness would correct with PT. But at his 3 month well visit (with another pedi in the group), it had worsened despite the torticollis improving.

    DS had barely any facial asymmetry to start but his head was completely flat in the back. So I went for an evaluation at Cranial Technologies at my pedi's referral and he ended up in a DOC Band by 4.25 months. He wore 2 helmets due to the severity of his flatness but now you'd never know he wore them as an infant.

    He was released from PT for the torticollis once he was crawling at 9 months.

    Luckily there is a Cranial Technologies in NJ (Paramus) so my trip was only 45 minutes each way. But I'd have traveled longer. I am a firm believer in following your gut here. If you feel your LO's head shape is not improving or worsening, I'd get the helmet?and sooner rather than later. There is only a short window of opportunity in which to correct the head shape. Good luck! 

    image

    Bronx Zoo: Summer 2013

    image


    To read my blog, click on the giraffe pic below!
    image
  • hmms, I am in the La Crosse area and go to Gundersen. They do the helmets right at the hospital here so I don't have to travel too far. About a 15 minute drive with traffic. I heard back from the nurse and the doctor wrote the RX, we just have to wait on Badgercare approval. I really hope they approve it, especially with her head going from .6cm to 1+cm difference in just 1 month. 

    She's been sick the last month too and when she gets sick she gets lazy with her neck and only sleeps on her comfy side. When she's feeling fine she'll switch back and forth from side to side to sleep. She is also primarily a tummy sleeper and very rarely sleeps on her back so I'm not sure what exactly is making her head so much worse if she's not on it very much.  

     

    [IMG]http://i47.tinypic.com/9s8qr8.jpg[/IMG]
    Aubrey Josephine born on 5/18/2012 at 10:57am.
  • My DD had significant torticollis and facial drooping.  She did not get a helmet because her plagio was mild.

    I would definitely get a referral to neurology.  My DD's facial drooping ended up being due to a facial palsy, which many times will resolve on its own.  My DD's did resolve without medical intervention, although it was later than most, so we ended up getting a referral to a cranial-facial plastic surgeon and were looking at surgical options.  Thankfully, an EMG showed that the nerve that was the cause facial palsy was recovering, so we just waited it out.  Now she has very, very minor facial drooping that no one untrained notices.  

    [IMG]http://i47.tinypic.com/2isa7if.jpg[/IMG]Charlotte Corinne and Evelyn Sophia- 2/15/07[IMG]http://i48.tinypic.com/9vk0mc.jpg[/IMG]
  • That's a hard situation to be in. I've had a couple of friends go through the same thing with their little ones. There is a new product that I discovered recently called Tortle. It's a little beanie hat that helps prevent and also treat some cases of flat head syndrome. I'm not sure how old your baby is now, but if she's 6 months or younger it would be worth checking out. They aren't nearly as expensive as some of the other alternatives, and it's a great product! There website is www.tortle.com. Hope this helps. Good luck with everything!
  • Oh my goodness- I was so excited to see this post!  I have been looking for a while for people to connect with on this!  We actually just got scanned today for DS helmet, should be fitted in a couple weeks.  He has severe plagiocephaly due to torticollis as well.  We also experience facial issues, including his eyes.  I have been dying to find some people to ask advice from who have had a helmet.  We are actually fighting right now to try and get insurance coverage, as my DH is AD and Tricare does NOT like to cover these, they classify them as "cosmetic".  

    Stupid question #1- what did anyone else do as far as a winter hat to go over the helmet?  We live in CO, so obviously, it's very cold.  Did you just buy an Adult sized hat to fit over the helmet?

    Thanks in advance for any and all advice!! 

    TTC with Endo-DX-10 yrs ago
    IUI#1-April 2010- Clomid 100mg, Ovidrel and timed intercourse= BFN
    IUI #2- Cancelled due to cysts
    IUI #3- June 2010- Clomid, Ovidrel and timed intercourse= BFN
    Break due to DH deployment
    Lap #7 Dec 2010- this time my Colon was adhered to my abdominal wall
    Since the start of our journey, new issues along with original Endo, 3 MFI unexplained, Cervical Stenosis, AMH .08, Low AFC, 2 blocked tubes
    IVF #1 - ET 09/18-Transferred 2 Embryos
    Beta #1 09/29-23 Beta #2 10/01- 52 Beta #3 10/05-342!! Lil Cub born 5/20
  • my LO has torticollis and has been in a helmet since he was a little over 3.5 months... his head shape was a mess since he is a good sleeper and slept on the right side of his head for hours...

     also, something interesting that happened to us is he failed his left hearing test at birth... we had him reassessed close to two months where we discovered he had SEVERE hearing loss in his right ear which was perfectly fine at birth.... left ear cleared because of fluid drainage... we just had his ears reassessed again last week (after wearing the helmet for three months) and he passed his right hearing test with flying colors. the audiologist was shocked and confused... but I wonder if it had to do with the straightening of his head... his ears were COMPLETELY off when he was 2 months... the right was way ahead of the left... and now they really are beginning to line up nicely. 

    that is just my thinking though... i am not a doctor... just an overwhelmed mom.:) i heard there is still a lot of research being done with plagiocephaly and developmental delays for babies who go untreated. 

    the helmet is the best decision my DH and I made and ours was covered 100% by insurance. we decorate his helmet once a month with fun sayings and designs (www.blingyourband.com) and it has become more of an accessory for our family... good luck with your decision! :)

    [url=http://www.thebump.com/?utm_source=ticker&utm_medium=UBB&utm_campaign=tickers][img]http://global.thebump.com/tickers/tt1500f1.aspx[/img][/url]
    [IMG]http://i1359.photobucket.com/albums/q793/stanfordt04/photo-91a.jpg[/IMG]
  • That is really interesting that you say that about his hearing.  Our DS failed several hearing tests as well, and we went to an audiologist, and he ended up passing at about 3 weeks old.  I was told that it was most likely a combo of a long labor, fluid in the ears, being "late pre-term" etc.  I wonder if that does have any validity with the ears being off kilter due to it.... hmmmm, I am also not a Dr, LOL, but that is a very interesting point. I am hoping that we can get everything to "shape up" before he starts to have any vision problems from the facial drooping.  My concern is that the other eye will start to over compensate for the poor vision on the one side.  Who would have thought that a "simple" diagnosis of torticollis would lead to so many other things?

     

     

    TTC with Endo-DX-10 yrs ago
    IUI#1-April 2010- Clomid 100mg, Ovidrel and timed intercourse= BFN
    IUI #2- Cancelled due to cysts
    IUI #3- June 2010- Clomid, Ovidrel and timed intercourse= BFN
    Break due to DH deployment
    Lap #7 Dec 2010- this time my Colon was adhered to my abdominal wall
    Since the start of our journey, new issues along with original Endo, 3 MFI unexplained, Cervical Stenosis, AMH .08, Low AFC, 2 blocked tubes
    IVF #1 - ET 09/18-Transferred 2 Embryos
    Beta #1 09/29-23 Beta #2 10/01- 52 Beta #3 10/05-342!! Lil Cub born 5/20
  • Hi - I'm just to the north in Eau Claire.  We doctor through Luther / Mayo in EC, there is someone that does helmets here, but our pedi has had better luck w/ Rochester so we went that route. I was in West Salem on Christmas Day visiting family, my dad owns a construction company and we have a LaCrosse branch so I'm familiar w/ the area, my mom grew up in LaX too.

    My insurance did not cover our helmet, they deemed it "cosmetic", we ended up paying about $2000, but that was 4 years ago already. 

     GL :) 

    Lilypie - (vulX)

     

    image

    Lilypie Kids Birthday tickers

  • image wither16:

    Stupid question #1- what did anyone else do as far as a winter hat to go over the helmet?  We live in CO, so obviously, it's very cold.  Did you just buy an Adult sized hat to fit over the helmet?

    Thanks in advance for any and all advice!! 

    My DS wore his helmet from Dec-Mar in WI, so cold ;) He was still in our infant carrier so traveling between car and daycare/store/whatever he was inside the carrier and I threw a blanket over the top.  He was too small to really play outside, so it never was an issue to be outside (and not in his carrier) without a hat.

    Lilypie - (vulX)

     

    image

    Lilypie Kids Birthday tickers

  • image hmms:
    image wither16:

    Stupid question #1- what did anyone else do as far as a winter hat to go over the helmet?  We live in CO, so obviously, it's very cold.  Did you just buy an Adult sized hat to fit over the helmet?

    Thanks in advance for any and all advice!! 

    My DS wore his helmet from Dec-Mar in WI, so cold ;) He was still in our infant carrier so traveling between car and daycare/store/whatever he was inside the carrier and I threw a blanket over the top.  He was too small to really play outside, so it never was an issue to be outside (and not in his carrier) without a hat.

     

    That seems like a solution, but I wear DS a LOT- I have really been doing my best to keep him off his back, thinking that would help the plagio. Obviously, it did not.  Which kind of leads to my other question, did anyone wear their LO with a Helmet?  I am wondering if that will even be possible.  

    Our DS is a linebacker, so we try to avoid the infant seat for that reason as well.  But, he is gross motor delayed, and cannot sit on his own either (in buggies, highchairs, etc), so we either have to use the infant seat or wear him, and now that I think about it, not sure how wearing would go with a helmet.....  

    TTC with Endo-DX-10 yrs ago
    IUI#1-April 2010- Clomid 100mg, Ovidrel and timed intercourse= BFN
    IUI #2- Cancelled due to cysts
    IUI #3- June 2010- Clomid, Ovidrel and timed intercourse= BFN
    Break due to DH deployment
    Lap #7 Dec 2010- this time my Colon was adhered to my abdominal wall
    Since the start of our journey, new issues along with original Endo, 3 MFI unexplained, Cervical Stenosis, AMH .08, Low AFC, 2 blocked tubes
    IVF #1 - ET 09/18-Transferred 2 Embryos
    Beta #1 09/29-23 Beta #2 10/01- 52 Beta #3 10/05-342!! Lil Cub born 5/20
  • I did not wear DS much prior to the helmet, so I never did w/ the helmet, I'm no help w/ that.  The helmet is kind of bulky, so depending on how you babywear, it might have his neck push out - try it and see :)

    Can your LO use an exersaucer?  Even before our LO's really fit, we could stuff blankets around them for a few min, but we weren't working w/ a gross motor delay.

     The PT we received for the tort also gave us exercises to assist w/ sitting, going from laying to sit and rolling. DS wasn't late doing these things, but w/ most milestones he hits them just as the window is closing. 

     

    Lilypie - (vulX)

     

    image

    Lilypie Kids Birthday tickers

  • image hmms:

    I did not wear DS much prior to the helmet, so I never did w/ the helmet, I'm no help w/ that.  The helmet is kind of bulky, so depending on how you babywear, it might have his neck push out - try it and see :)

    Can your LO use an exersaucer?  Even before our LO's really fit, we could stuff blankets around them for a few min, but we weren't working w/ a gross motor delay.

     The PT we received for the tort also gave us exercises to assist w/ sitting, going from laying to sit and rolling. DS wasn't late doing these things, but w/ most milestones he hits them just as the window is closing. 

     

     

    He loves his jumper, and walker- not so much the exersaucer because he gets bored.  He finally has enough head control to use those well.  Now it's just sitting and bending legs etc that we are working on, in addition to the neck muscle.  He is the type of gross motor delay where basically he is a stiff board- does not like to bend, etc. 

    TTC with Endo-DX-10 yrs ago
    IUI#1-April 2010- Clomid 100mg, Ovidrel and timed intercourse= BFN
    IUI #2- Cancelled due to cysts
    IUI #3- June 2010- Clomid, Ovidrel and timed intercourse= BFN
    Break due to DH deployment
    Lap #7 Dec 2010- this time my Colon was adhered to my abdominal wall
    Since the start of our journey, new issues along with original Endo, 3 MFI unexplained, Cervical Stenosis, AMH .08, Low AFC, 2 blocked tubes
    IVF #1 - ET 09/18-Transferred 2 Embryos
    Beta #1 09/29-23 Beta #2 10/01- 52 Beta #3 10/05-342!! Lil Cub born 5/20
  • we just got ours and it has been nothing but problems  so far. I really hope it's worth all of our tears. he has glasses and the helmet just won't sit right and constantly pushes his glasses down. anyone' s lo wear it with glasses ? we have already been back to adjust it and I think she made it worse.

    also, our ped said it was just cosmetic so we opted not to do it (which was a mistake). we first brought it up at the 4 month appt.  but now his Neuro said he needed it once we found out he has ccerebral palsy.  he went to therapy for the tort which helped but did nothing for the flatness.  our insurance covered it.  my advice is to follow your mommy instinct and do your research and don't accept everything the pediatrician says.  good luck! 

    Baby Birthday Ticker Ticker
This discussion has been closed.
Choose Another Board
Search Boards