Comments on: Our experience with plagiocephaly, torticollis, and a helmet http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/ Moms of Multiples Tell it Like it Is Wed, 08 Feb 2012 17:03:17 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Plagiocephaly http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-28519 Plagiocephaly Tue, 19 Jul 2011 13:30:22 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-28519 Thank you for sharing your story- it's great to know there are people out there who are passionate about this condition and its cures. In the UK also the National Health Service knows and does little about flat head syndrome in babies. Awareness and availability of treatments such as the helmet Alex had are on the rise however- hopefully sharing this website on your blog will provide some worried parents with an answer. Thanks again. http://www.steeperclinic.com Thank you for sharing your story- it’s great to know there are people out there who are passionate about this condition and its cures. In the UK also the National Health Service knows and does little about flat head syndrome in babies. Awareness and availability of treatments such as the helmet Alex had are on the rise however- hopefully sharing this website on your blog will provide some worried parents with an answer. Thanks again.

http://www.steeperclinic.com

]]> By: Plagiocephaly http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-28292 Plagiocephaly Fri, 15 Jul 2011 10:46:44 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-28292 It's great to see helmets improving people's lives. We strive to help get parents and kids to have a better life and it is great to see the evidence. It’s great to see helmets improving people’s lives. We strive to help get parents and kids to have a better life and it is great to see the evidence.

]]> By: Janice http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-2529 Janice Mon, 27 Apr 2009 20:11:28 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-2529 Hi Nancy - I am a pedi PT in Florida and Have not herd of this pillow. Can you send me some info? janice Hi Nancy – I am a pedi PT in Florida and Have not herd of this pillow. Can you send me some info? janice

]]> By: Meghan http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-2528 Meghan Thu, 26 Mar 2009 19:30:41 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-2528 Thank you!!! We are gonig through this now with our Anna (who is also a twin head down and breach)!!! Its been quite a ride. I appreciate everything you wrote and feel like there is a llight at the end of the tunnel. Thank you!!! We are gonig through this now with our Anna (who is also a twin head down and breach)!!! Its been quite a ride. I appreciate everything you wrote and feel like there is a llight at the end of the tunnel.

]]> By: Sally http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-2527 Sally Mon, 01 Dec 2008 00:51:37 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-2527 Thank you for writing this! My son, Ben, had a similar trajectory: after our pediatrician failed to see the plagiocephaly following her casual diagnosis (and no recommendation for PT) of torticollis, she suggested that he might have hydrocephalus or another brain malformation. You can imagine my horror. I immediately found a new pediatrician, who referred us to a PT, and a plastic surgeon for a helmet. He hasn't gotten his helmet yet-- he is 6 months old--and I have gone through all of the feelings you describe. I've been so upset, so sad, I've written the letter to my little boy you describe, you-name-it. I worry all the time for him, but reading your account and the accounts from other mothers has made such a difference. I am still angry at the time we lost because of our first doctor's negligence, but I keep telling myself that his torticollis will improve and the helmet will work. Thank you. Thank you for writing this! My son, Ben, had a similar trajectory: after our pediatrician failed to see the plagiocephaly following her casual diagnosis (and no recommendation for PT) of torticollis, she suggested that he might have hydrocephalus or another brain malformation. You can imagine my horror. I immediately found a new pediatrician, who referred us to a PT, and a plastic surgeon for a helmet. He hasn’t gotten his helmet yet– he is 6 months old–and I have gone through all of the feelings you describe. I’ve been so upset, so sad, I’ve written the letter to my little boy you describe, you-name-it. I worry all the time for him, but reading your account and the accounts from other mothers has made such a difference. I am still angry at the time we lost because of our first doctor’s negligence, but I keep telling myself that his torticollis will improve and the helmet will work. Thank you.

]]> By: Michelle http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-2526 Michelle Tue, 16 Sep 2008 16:20:51 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-2526 Hello! I enjoyed reading your story about plagiocephaly and helmeting. In addition to helmets, there are other types of therapy that help the head shape as well, and your son may benefit even at this late date! michelle Hello! I enjoyed reading your story about plagiocephaly and helmeting. In addition to helmets, there are other types of therapy that help the head shape as well, and your son may benefit even at this late date!
michelle

]]> By: Jenny http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-2525 Jenny Fri, 29 Aug 2008 00:25:15 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-2525 It was so nice to stumble across this article. My son who is 6mths old is being fitted for a helmet after Labor Day. It was a hard decision because emotionally you feel like you can fix it. He was diagnosed with torticllos at 2mths and is just about cured. Which was due to PT and (don't be scared) my wonderful chiropractor. With out him Dylan would still be a mess. The torticolls left Dylan having uneven ears and a bulge on the right side of his forehead due to the way he was sleeping. I'm happy to hear that the helmet has worked so well for you. I hope we have the same results! It was so nice to stumble across this article. My son who is 6mths old is being fitted for a helmet after Labor Day. It was a hard decision because emotionally you feel like you can fix it. He was diagnosed with torticllos at 2mths and is just about cured. Which was due to PT and (don’t be scared) my wonderful chiropractor. With out him Dylan would still be a mess. The torticolls left Dylan having uneven ears and a bulge on the right side of his forehead due to the way he was sleeping.
I’m happy to hear that the helmet has worked so well for you. I hope we have the same results!

]]> By: Heather http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-2524 Heather Thu, 14 Aug 2008 21:41:50 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-2524 I just got off the phone booking my son for his little helmet he is also a twin and I can tell you the guilt and self doubt is incredible. They will be 7 months old next week and I can only hope that we see the turn around as quickly as you did. It's just nice to know other folks understand. The torticolis is still an issue for both little ones but atleast I know that there is a light at the end of the tunnel. I just got off the phone booking my son for his little helmet he is also a twin and I can tell you the guilt and self doubt is incredible. They will be 7 months old next week and I can only hope that we see the turn around as quickly as you did. It’s just nice to know other folks understand. The torticolis is still an issue for both little ones but atleast I know that there is a light at the end of the tunnel.

]]> By: Alisa http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-2523 Alisa Thu, 14 Aug 2008 02:52:14 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-2523 Great story to share. So many new parents are not aware of torticollis, let alone it's lasting effects. I have 2 year old triplets. Before they left NICU, I specifically asked about having them evaluated for torticollis. The Developmental Specialist told me they were fine, it wasn't necessary because it was unlikely. Well, within a month I could see that two of my children favored turning their head to one side and were developing huge flat spots. I didn't even bother with the pediatrician. I had an OT friend take a look and she gave me the name of a pediatric PT who was very experienced with this. The PT starting working with my kids right away. My daughter only went a few times, my son Noah had a few months of therapy. He started out with his ears out of wack, his head totally lopsided to the naked eye and unable to turn to the right. Happy to say his head is now perfect, and his ears are almost lined up. My other son had terrible reflux and the same PT got him set up with a great therapist who fixed that problem too. This PT is my hero! As a side note, the PT told me that my particular hospital was convinced by Blue Cross to decrease evals for torticollis in the NICU. Doesn't that stink?? Bet they would change their tune if they had to pay for more helmets! Great story to share. So many new parents are not aware of torticollis, let alone it’s lasting effects. I have 2 year old triplets. Before they left NICU, I specifically asked about having them evaluated for torticollis. The Developmental Specialist told me they were fine, it wasn’t necessary because it was unlikely. Well, within a month I could see that two of my children favored turning their head to one side and were developing huge flat spots. I didn’t even bother with the pediatrician. I had an OT friend take a look and she gave me the name of a pediatric PT who was very experienced with this. The PT starting working with my kids right away. My daughter only went a few times, my son Noah had a few months of therapy. He started out with his ears out of wack, his head totally lopsided to the naked eye and unable to turn to the right. Happy to say his head is now perfect, and his ears are almost lined up. My other son had terrible reflux and the same PT got him set up with a great therapist who fixed that problem too. This PT is my hero! As a side note, the PT told me that my particular hospital was convinced by Blue Cross to decrease evals for torticollis in the NICU. Doesn’t that stink?? Bet they would change their tune if they had to pay for more helmets!

]]> By: Gena Marshall http://www.hdydi.com/2008/08/our-experience-with-plagiocephaly-torticollis-and-a-helmet/comment-page-1/#comment-2522 Gena Marshall Tue, 12 Aug 2008 19:36:41 +0000 http://howdoyoudoit.wordpress.com/?p=1099#comment-2522 What a challenge to go through without having to second guess the care and insurance policies. What a strong twin mamma! What a challenge to go through without having to second guess the care and insurance policies.

What a strong twin mamma!

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