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MOM of 4 one with tort

Amber - posted on 11/12/2009 ( 13 moms have responded )

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Hi my name is Amber! I am a mother of 4! I have 2 girls ages 5 and 3 & 2 boys ages 5 and 10m!My 10m was diagnosed at birth with torticollis! He dropped 6 weeks before birth and his muscles didnt were so weak when he was born! He started PT when he was 2 months old and then at age 9m he started OT and then TOT not long after! He has improved so much! He still has a long way to go!

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Aliesha - posted on 03/20/2013

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Hi my names Aliesha. My son was diagnosed at birth with tort because he was breach. I was told by my midwife and doula aswell as the PT it was the worse case of tort they had seen. We went to Cairo as well as a physiotherapist but neither would do anything I couldn't do at home so I took matters into my own hand. I started reading about tort and treatments online. I did stretching with him whenever I would think about it, which was far less then the doctor told me. The doctors told me I should be stretching him until he cried and I just couldn't bring myself to doing that. I would check on him about 4 times a night and and turn his head to avoid getting a flat stop and in the morning I would prop him up in his exersaucer and face him away from the tv so he would have to turn to the tort side to see. It has worked wonders! He now has full rotation but still has a tilt from weakness on his left side. My question is if anyone has used Botox for weakness only? Or is it basically used for tightening and does anyone have any advice for me? I keep him on his tummy a lot now that he likes it and I hold him so he has to support his neck with the week side but nothing seems to be helping. He still has a tilt of 10 degrees:( just looking for some other options.

Nikki - posted on 02/07/2011

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Hi April!
I wished I had someone to talk to about this before I had to go trough it blindly with my daughter. I did alot of research and things you read can be scary. I personally think you should meet with the doctor that will be doing the injections and be confident with them. My daughters doctor heartfully assured me this would not harm her and she did alot of injections on children with all sort for musclar problems. She told me she would do it on her own kids if they needed it with out a doubt. My only complaint was I should have been there when they woke her up. She was freakin out. But once we left the hospital it was like nothing ever happened. And you will have to do aggressive strengthening after the injections. Basically the injections just paralyze the tight muscles so you can build the weak muscles up to hold the head up straight. If you have any other questions you can email me directly if you want to.
nsprinkle@comcast.net

April - posted on 02/07/2011

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I found this page in a google search about botox shots in children with torticollis. I am so thrilled to talk with someone who has gone through it.
My son Gus was diagnosed at 6 months, but I knew something wasn't right for a while before. We were referred to a physical therapist who suggested repositioning, which has helped somewhat. That therapist suggested a pediactric therapist and we finally saw one for the first time today. Gus will be 9 months sunday.. The therapist suggested Botox injections, and scheduled him for sometime in April and said we would discuss it in more detail at our next appointment in 3wks. I have not done much research as I just started today, but anything you know now that you wished you would have known then would be very beneficial!
Gus just started sitting pretty much unsupported in the last 2 weeks. He is trying to get his knees under himself so he can try to crawl, but hasn't gotten very far yet. He also just started rolling consistantly both ways in the last 3-4 weeks.
It is so nice to have others to talk to who are dealing with the same issues.

Nikki - posted on 06/23/2010

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Hi Michelle!
My daughter had botox at 8 months old and by 11 months old she never went crooked again.(she started walking at 13 months) I've also heard very good things about botox from my dr who did my daughters injections. I did alot of online reading and it was really scary going in to it. But my doctor (physiotherapist) said they do alot of these injections in kids with ms and other conditions. It is very important to continue aggressive physical therapy in the first 3 months. The botox will paralyze the tight damaged muscles to allow the the other weak muscles to hold up the head. It took 3 months to work for my daughter who also has therapy from 1 month old. It was not painful for her. Just waking up in the hospital with out me we traumatizing to her. Maybe just see if you can be there when he wakes up from anest. And they're only under like 15 or 20 minutes. Other than that I would do it again if I had too. Hope that helps. Don't hesitate to ask me anything. I wished I could have found someone to talk to going through that. Hope that hepls and good luck!

Michelle - posted on 06/22/2010

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My son is 20 months old and has torticollis. He has been in therapy since he was one month old. He also has vision issues. He is not walking yet and we are getting ready for the botox treatments. I have heard good things about it. The therapist said it might take more than one treatment. Did this happen to anyone else? Also, do you know other children who have been delayed in walking? Thanks

Nikki - posted on 04/12/2010

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My daughter crawled at 8 months. I felt she could have started earlier but was not comfortable enough to. She hated tummy time, because I think it was painful. She also had botox 3 days before she crawled. At 11 months her head finally stayed strait and she walked at 12 months. So i think it might a effect milestones a little but nothing major. Our physiotherapist is the one that recommended botox.

Hope that helps. Good Luck!

Dayna - posted on 04/12/2010

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My son finally had his appointment at the children's hospital in the physiotherapy torticollis program!!! From the appointment I learned that my son had no residual muscle tightness (yay) and his head shape has only been minimally affected (double yay!). They gave him a score of 2.5/15 with 0 being better than 15. So not too bad! About a week before this I had professional pictures done and noticed the first picture he had no head tilt whatsoever, 2nd picture mild head tilt and 3rd picture severe head tilt. So what the physiotherapists told me is that his problem is with endurance so I have some activities I need to do with him everyday. The major 1 is looking in a mirror and tilting him so he has to use his neck muscle strength to tilt his head so he's looking upright. So Im pretty happy!

I want to know if the other babies were behind with milestones: sitting crawling, walking?

Nikki - posted on 02/09/2010

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My daughter was also born with torticollis, not sure if it was from in-utero or from delivery. We did PT from the time she was 2 months old. The weird thing with her was she would be tilted really bad for like a week and then the next week you'ld never think anything was ever wrong with her neck. And just when you thought it was all over. She would wake up and be more tilted than ever. It was very difficult because there was no good answer for me to believe why this was happening. While it had affected her head shape minimally, I didn't want it to affecting her motor skills and developemental milestones. Which trying to get her to crawl was a challenge. My ped sent me to a specialist who suggested botox. She assured me it has had tremendous outcomes. Basically tiny amounts of botox are are placed in the tightened muscles and paralyzes them so the other side can get strong enough to hold the head up strait. PT is still a must for this period. As the botox wears off in 3-6 months. My daughter got botox at 8 months old and she hasn't had a single tilt since she was 11 months old.



I only wish I had someone to ask advice when I was contemplating treatments.

So if I can be of any help to anybody, please let me know.

Dayna - posted on 01/21/2010

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My son has a referral to the Children's hospital. His appointment is in 3 weeks. Apparently they have a torticollis program at the hospital. I'm anxious to start the therapies and try to correct his neck.

Amber - posted on 01/18/2010

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Yes they thought about the collar for my son but he is a red head and always did better when they said they would try something and the tape he used for a while but then was allergic too it so they had to stop using I am so glad Kaylie is doing so well. Its like there was never anything wrong isnt it.

Crystal - posted on 01/16/2010

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Hi, my name is Crystal. My daughter is turning a year old in 4 days. She was diagnose with tortacollis at 2 months old. She was breech and with the position she was stuck in she could only turn her head one way, making the right side of her neck weak. She began physical therapy at about 3 months and it has been great. Her therapist came to our home. (which was very nice, some days I just didn't have time to even take a shower let alone get her ready to go out too) She started by coming twice a week then after about 3 months (when Kylie could sit up on her own) she brought us a "tot collar". It looked scary, putting something around my daughters neck was a little unnerving but it wasn't bad at all. It's just a bendable tubular collar with stiff tubes on the weak side to help her hold it up. Her therapist also put tape on her shoulders to help with making her muscles flex. (she never even knew the tape was there) With the collar working the therapist started coming only once a week. Kylie wore the collar every day for about an hour until she was about 10 months old, when she figured out how to take it off and started playing with it instead. lol. But, I can say 100% that the collar worked. Her neck is almost perfect and the rest of her body is now in line. She will be 12 months on Wed. and last week was her very last therapy day!!

Amber - posted on 01/14/2010

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Yes I find it helps a lot. Al 3 of his therapies help in different areas. TOT helps with motor skills and working his muscles PT helps with him with reaching his milestones and motor skills he is working on walking right now. Ot is mainly to help with stretching his muscles through massage. I would deff ask about either therapy because with my son they have helped him so much you can see a big difference. I will send pictures from when he was born n then one from Christmas this year.

Dayna - posted on 01/13/2010

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Hi Amber! Do you find TOT helping? I want to see if I can get one for my son. My son had a traumatic delivery with a failed vacuum delivery followed by forceps. His head was stuck under my pubic bone and his neck muscle was damaged with the force of pulling him from me. He started chiropractics at 9 days old and has improved tremendously. He still has some occasional head tilting. He's 6 months old.

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