National Plagiocephaly & Torticollis Awareness Day
Public Comments (1,211)
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Jul 17th, 2015Someone from Bettendorf, IA signed.
Jul 17th, 2015Someone from Eldridge, IA signed.
Jul 17th, 2015Someone from Erie, IL signed.
Jul 17th, 2015Someone from Cordova, IL writes:
My son has severe scoliosis due to two amniotic sacs being present while I was pregnant with him. He was suppose to have an identical twin but egg stopped splitting so he was stuck in half of the sac; he simply ran out of room which caused him to be born five weeks premature and have torticollis. The torticollis is so severe it has now caused him to develop a scoliosis, plagiocephaly, and brachycephaly. Due to all of this, he sees seven different doctors/therapists and typically has two to three appointments a week. He wears a head shaping helmet, a torticollis collar, kinesio tape, and a SPIO suit. The financial expenses are extreme on their own but what's worse is the emotional turmoil it is on us just trying to make sure we're doing everything we can to help him and physically just taking him to all of his appointments (ie. needing to take time off work or having family members take him). But hands down, the worst part is the constant worry that we won't get everything fixed and he'll get made fun of the rest of his life because people are so unaware of torticollis and it's complications. Education and awareness of the general public would make this all SOOOOO much better and easier.Jul 17th, 2015Someone from Bettendorf, IA signed.
Jul 17th, 2015Someone from Bettendorf, IA writes:
We need to educate educate educate...I had no idea what torticollis was until my son was diagnosed with it at 3 months old. Early detection is really the key to getting treatment right away to prevent and help ease some of the possible other risks,REPORT COMMENTS
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No, CancelJul 4th, 2015Someone from Aiken, SC writes:
My daughter just celebrated her very first birthday last weekend. She has torticollis & scoliosis. She is in therapy twice a week. We noticed her neck wasn't correct when she started to hold her head up on her own. Her doctor gave us stretches to do at home but it got worse after that. From the tilt, she now has an extremely curved spine. It has been scary and overwhelming but I am getting to talk to people who have kids that have/have had had the same issue and it's good to have support. I hope more people can read this and learn more about this condition and help raise some awareness!REPORT COMMENTS
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No, CancelJun 16th, 2015Someone from Hollywood, FL writes:
The cost of cranio-facial remolding orthosis is prohibitive for most families! Insurance coverage for physical, as well as other therapies, is limited and not extensive enough for long term follow-up of infants/children impacted by learning, motor or sensory ( and social/psychological) dysfunction.REPORT COMMENTS
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No, CancelJun 15th, 2015Someone from Olympia, WA signed.
Jun 15th, 2015Someone from San Jose, CA signed.
Jun 15th, 2015Someone from Olympia, WA signed.
Jun 15th, 2015Someone from Saint Augustine, FL signed.
Jun 15th, 2015Someone from Rio Rancho, NM signed.
Jun 15th, 2015Someone from South Lyon, MI writes:
For our daughter who had/has both conditions. We noticed an issue at 3 days old. Our ped continued to tell us to wait and see until she was four months. We did this not knowing better. Her conditioned became much more severe in this time. Thankfully a few months in the helmet corrected her head shape. Her tort is a different story. Between not starting physical therapy until four months and having a physical therapist who was treating her incorrectly for six months we are still battling with tort and some of its related issues at over 18 months. The physical therapist had worked with children for over 30 years and worked at one of the biggest children's hospital in our state. It is amazing the lack of knowledge there is in the medical community about this condition with the number of cases and how much it is increasing. And these are not just cosmetic issues. Many of these children have related reading disabilities from attempting to read crooked and have speech delays. Please spread the awareness.REPORT COMMENTS
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No, CancelJun 15th, 2015Someone from Whitehall, PA signed.
Jun 15th, 2015Someone from Chester, VA signed.
Jun 15th, 2015Someone from Norfolk, VA signed.
Jun 15th, 2015Someone from Oklahoma City, OK signed.
Jun 15th, 2015Someone from Homestead, FL signed.
Jun 15th, 2015Someone from Copiague, NY signed.
Jun 15th, 2015Someone from Chehalis, WA signed.
Jun 15th, 2015Someone from Olympia, WA signed.
Jun 15th, 2015Someone from Montesano, WA signed.
Jun 15th, 2015Someone from Victoria, TX signed.
Jun 15th, 2015Someone from Lacey, WA signed.
Jun 15th, 2015Someone from Monroe, MI signed.
Jun 15th, 2015Someone from Olympia, WA writes:
My daughter has both, I'd love to see this happen!!!REPORT COMMENTS
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No, CancelJun 15th, 2015Someone from Oshkosh, WI signed.
Jun 15th, 2015Someone from White House, TN signed.
Jun 15th, 2015Someone from Atlanta, GA signed.
Jun 15th, 2015Someone from Fairhope, AL signed.
Jun 15th, 2015Someone from Boynton Beach, FL signed.
Jun 15th, 2015Someone from Algonquin, IL signed.
Jun 9th, 2015Someone from Grove City, PA writes:
signing for my daughter, Parker, who has been suffering from torticollis. she's now almost 6 months old and has made a lot of progress!REPORT COMMENTS
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No, CancelMay 18th, 2015Someone from Mckinney, TX signed.
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