Posted by
crj
19 yrs ago
Hi
Baby is 1 month old.
We noticed she was always looking to the left, and would always face her head to the left whilst sleeping.
And her head was getting a bit 'flat' on the left.
We went to the Dr today, and he diagnosed torticollis.
Basically this means that one of the neck muscles (on the right side for us) is 'tight' and as a result baby always has a tilt. Our baby already cannot look to the right. If not treated it can lead to more serious problems.
We already had our first physio session.
I have been on Google and there are some great sites (listed below).
Does anyone else have a baby with Torticollis? If so, I would love to hear what you are doing to fix this and what works/doesn't work, etc..
MATILDA - we are going to a physio as per our pediatrician, but do you have any specialists up there? I'll call you to ask
Thanks
Web links:
http://www.torticolliskids.org/ (has useful things to do every day)
http://www.childrensmemorial.org/depts/rehab/torticollis.asp (also useful advice for long term therapy)
http://www.keepkidshealthy.com/welcome/commonproblems/torticollis.html (with stretches and graphics)
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crj
19 yrs ago
Wow, that is GREAT news!
Do you recall how many months old she was when diagnosed?
Did you find any good doctors or physios in HK?
I want her to be examined by a specialist (we found one at Chinese U), to get a better idea of how severe it is and d what to expect. It seems some babies, like yours, recover really well, but others don't...
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I will pass your enquiry to our phyios as they will have a better understanding.
Lynne - 2849 0328
Matilda International Hospital
Hong Kong
http://www.matilda.org
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joey2
19 yrs ago
My son was diagnosed with this when he was a few weeks old (he is now 18 months and fine!!) He always used to sleep with his head on one side which caused him to have quite a flat head and then it even started to cause some bulging on his face (as a result of the flat head). The condition was picked up when I attended teh Matilda baby clinic. My pediatrician then wrote me a referral for a physio and I chose to go to the Matilda physio dept. The physios are excellent there, know everything about this condition and have treated it a lot before. I started going twice a week and then it went to once a week, and then once every two weeks. They did exercises with him and basically stretched the muscle (you could feel a "knot" in the muscle on one side of my son's neck). I think I was able to stop physio when my son was around 9 months. By this time he was sitting on his own and they were able to assess if he would have any problem with a head tilt (which he did not). They also said to come back if I noticed any head tilt once he was walking (which he also did not have.) Anyway, he is now fine with absolutely no long-term effects.
My understanding is that if this condition is treated early then there are normally no long-term effects. The physio will show you exercises to do with your baby between physio sessions as well which are very important to do.
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I have worked with paediatric patients before. On and off I have babies in here with torticollis. Usually it takes a few months to fix the problem. Except for our treatment, I also teach mother some gentle positioning and handling techniques. We usually have treatment for baby up to 6 to 7 months old to make sure their head control is good. You are welcome to contact me to discuss.
Fanny - Physiotherapist 2849 0760
Matilda International Hospital
Hong Kong
http://www.matilda.org
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crj
19 yrs ago
Joey2 - thank you! I really hope we have the same experience as you!
Hi Lynne and Fanny (and Crystal!)
Thank you thank you...
Fanny, thank you for your time on the phone.
I am calling my Dr to ask for a referral to see Fanny.
See you this week!!
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Hi, our baby is 5 months old and also had torticollis from birth. One side of his head started to get progressively flatter - I was taking him to see a cranial osteopath and also doing gentle neck exercises. However, the only thing that really seemed to work was a device called the Safe-T-Sleep which is a length of fabric that just straps around the cot and then around baby while he sleeps, it basically holds him in place. We sleep him on his side now (ie, the good side) and it is very effective. Head is almost completely round again! It's a NZ product, email me on Audreytf@hotmail.com if you want more info.
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crj
19 yrs ago
Hi Audrey - thanks, I will email you now.
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crj
19 yrs ago
I can't believe this thread was started only 20 days ago, so much has changed!
THANK YOU ALL.
We are now seeing Fanny at Matilda 3 x week for physio, and doing exercises and stretches every day at home.
Baby is already doing better, although we have a long way to go.
We also saw THE specialist in Hong Kong, Dr Bobby Ng at Prince of Wales Hospital in Sha Tin. He said on a scale of 0-10, she is only a 1 -
YEAH. (OK, I probably didn't need to see him, but I wanted to cover ALL bases just in case). I am still seeing Sandra (pediatric physio) up there once a month just to monitor and give advice.
We also went to Carla a CranioSachral therapist, which was good for calming the baby down and very gentle, but does not replace physio. Again, we just wanted to try everything!
We owe HUGE THANKS to our pediatrician for diagnosing this at the 1 month check up. Dr Ng told me that in HK at the Mother-Child Health Clinics all babies are tested for Torticollis, as a result cases are caught very early in HK. (All the sites I looked at above had horror stories of USA cases that were not diagnosed this early, and/or were very severe, which is why I freaked out.)
So the end of it is:
Now:
3x physio a week
stretches, exercises and positioning at home every day all day
LOADS of tummy time to strengthen the neck muscles
Set up changing table, play mat and cot with all stimulation on one side to encourage her to look that way.
sleeping with a special pillow/wedge so her head can't turn left
Boppy noggin nest for the car seat to help keep her head in position (bought from AsiaXPat - yeah)
SafeTSleep Sheet (Thanks Audrey) but haven't used it much yet as she is still small in it! Great for doing the exercises at home though!
We had to change the way we do basic things - hold in in ways so she looks the right way or stretches her neck, cary her in the sling to stretch her neck the right way, always 'position' her head to face the right way, approach from the rigth so she looks that way, be sure when we hold her the stimulation or light is to the right so she looks that way, etc...
even though she is mild, we are expecting 9 months of physio.
Each 'stage' we can do different things - ie, at 3 months when she can has more head control we can do new things, then sitting, then crawling...
It isn't easy, but it is 100% correctable so we are taking the therapy really seriously and the result is visual improvement already!
I really owe you all a huge thanks - the messages above, and the PMs I received were just FABULOUS. It was PRACTICAL and really really helped.
PS
There is a baby from an orphanage in China at Matilda getting some serious surgery who also happens to have Torticollis (the least of her problems), and is being treated by Fanny (our physio). I am contacing the orphanage to see what they need and will be looking for donations of things to bring to Beijing and give to the orphanage, look out for a thread on this soon....
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ciji
19 yrs ago
I am glad you are seeing a cranio-sacral therapist.
I was going to recommend Carolyn Rhodes at: http://www.thebodygroup.com/who.htm
She is excellent.
Good luck
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Hi crj,
best of luck on your move - where are you heading to and will we still expect to see you on this forum? :)
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crj
19 yrs ago
Hi WM - we are moving to Beijing at the end of August and can't wait!
We still need to find a pediatric physiotherapist in Beijing... I am researching this at the moment and can't find anyone. But my physio here in HK is helping to look too.
DOES ANYONE KNOW A PEDIATRIC PHYSIOTHERAPIST IN BEIJING??
Thanks
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crj,
best of luck with your move to beijing!!
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crj
18 yrs ago
Just another update from Beijing
Baby is now almost 7 months old.
We go to Physio 1 x week at International SOS where they have someone with Torticollis experience.
Baby is now just starting to sit, and now reaches for things with BOTH hands (yeah!!), she rolls over both directions, and still loves being on her tummy and doing 'yoga'. Best of all, she does NOT have a tilt, and no noticable flat spot either.
She is on normal track development wise.
If you see her, you would not know she has Torticollis.
Her passive range - ie, when the physio moves her head - is equal on each side.
Her active range - ie, when we show her a toy to get her to turn her head - is 110 degrees on the left side, and 90-93 degrees on the right side and getting better every week. Basically, that means on her left side, she can easily look over her left shoulder, and on her right side, she tends to stop just before her right shoulder although sometimes going level with it - but we need to 'push' her to go beyond it (like she can naturally on the left side)
Physio sessions have totally changed, when she was younger it was mostly passive - they stretched her, she cried.
Now it is all about stimulating her to look to the right, and then when she reaches the end of her own range 'pushing' her a bit further. She does not cry (except when we take away her toy!)
Because she rolls over now, we also had to move the stimulation on her crib to be on both sides and have centred more toys on her playmat since she rolls all over the place!
I can't believe how much she has improved, even though we still have physio ongoing until she can walk, it should reduce to every other week eventually... we are thrilled she has normal development, has hit her milestones, and will fully recover.... it took a lot of work, but we are almost there!!
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hi crj,
great to hear from you and glad it's all good news.
hope you're settling down well in beijing!
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crj
18 yrs ago
Just another update from Beijing.
Baby is now 1 year and 2 months old, walks great and is progressing well.
We still go to physio once a month for monitoring and some pasive stretching.
She doesn't have a tilt, but when she is tired I think I sometimes see one.
She still has much better range turning her head to the left, than to the right. This is very frustrating, as there is little we can do at this point except monitor it.
Often when she sleeps, she still favours the 'strong' side, and there really isn't anything we can do about that. Sometimes though she is on the 'weak' side, and that is great!
When she turns 3, we can start ballet, which will be very good for her posture and neck movements, that is the next step at this point.
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Hi crj and all,
I am so glad to find this whole chat here and thank you for posting and sharing.
My son is three month old now. At two months old, I noticed about his fat head and took him to see Dr. Ruiling Fung. Dr. Fung immediately diagnosed him with Torticollis and referred me to see Caroline Rhode.
We have had 10 sessions with Caroline and he does not seem to improve very much. I am not sure I should continue with Caroline at this moment.
I am going to take him to see Fanny (Fanny - Physiotherapist 2849 0760) at Maltida hospital next week.
I have also made an appointment to see Dr. Bobby Ng of prince wales hospital of HK. I read bunch of research he published on Torticollis treatment on the internet.
Did any of you try Chinese aucpuncture? Also, any of you had xray of your baby's neck?
Any other good suggestions you have will be appreciated.
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Both our daughters had this. No long term effects.
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Wow.
I'm so glad I saw this post! My daughter has a flat head because she always favours one side for sleeping. My pedaetrician said it was nothing to worry about!!! Well, I think I will seek a second opinion and learn some of the physio exercises...
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my daughter was diagnosed with torticollis when she's 3 weeks old. she's a big baby (weighs 4.38kg at birth). she's now 8.5 months old and has been through regular physio, osteopathy, chinese acupunture and IMT. progress is not satisfactory (can only turn about 40 degrees to her bad side). we just worry that this will affect her developments and we decided to take her for a surgery next month with dr bobby ng.
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My son is 8 months old now. his head shape improved but not too great.
I am taking him to see Dr. Bobby Ng.
Franky i am getting frustrated that our pedaetrician kept saying nothing to worry about.
I am also looking at the helmet now.
check this. cranail technologies Cranialtech.com. which has results about the helmet
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Hi there,
My daughter is now 7 months old. Her head shape was also growing off in one direction, so much so that our paediatrician described her as "parallelogram head"!!!
I don't think it has improved a great deal and we brought it up with our doctor again. But he also said that it's no problem because they spend more time sitting up etc, and that it will improve over time.
It's a tricky one: do you wait and see if it will be fine, like what the doctors say? But then if you wait, what if it's too late to correct?
In terms of torticollis, I know that my daughter has no problem with tight neck muscles etc and can look well in both directions. But I do feel that her head is still bulging out on one side.
I would be very interested to hear about your meeting with Dr Bobby Ng and about the helmet! Thanks.
I would also be interested to hear from other parents who felt that their babies had misshapen heads but that this problem went away by itself over time???
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Hi everyone, my daughter is 6 months now, and i had noticed her head tilt from two months but two separate doctors told me that it would go away by itself. She is currently undergoing physiotherapy with Liesbeth Krebbers. Thank you for all your posts it has been very helpful. Will be contacting matilda.
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