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addingonemore
My family is complete <3
Member since 11/10 2037 total posts
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tortocolis and misshapen head
DS is 5 months with an adjusted age of 3 months (he is a preemie) and he was diagnosed with tortocolis. He will be starting PT next month. His tortocolis causes him to keep his head turned mostly to the right. Due to this, his head is becoming misshapen- flat on the side and slanted to the back. I keep him on his left side as much a possible and I am hoping with the PT he will really start to loosen up. At his last appt, his ped suggested he be evaluated for a helmet- which is totally cosmetic. He has been through so much already and for my own reasons, I do not want to do a helmet. I know their heads can reshape and was wondering if anyone had any experience with a misshapen head and the head reshaped.
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Posted 8/17/12 10:18 AM  |
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blue11
LIF Adult
Member since 2/11 1706 total posts
Name:
kat
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Re: tortocolis and misshapen head
my ds had a flat spot on his head but did not have tortocolis. we went to 2 neurologists, one said to get the helmet and the other said it would fix itself. I talked to my ped and decided to go with the helmet - and i just wanted to tell you that i cried and felt horrible, but now that the helmet has been on for 6 weeks its not that bad at all!! and i have seen amazing progress. he wil hopefully have it off in 6 - 8 weeks. he doesn't mind at all, it doesn't bother him - if he is getting fussy then i take the helmet off. it is much worse for us, the parents, then it is for the baby. for me i didn't want to risk his head not fixing itself, especially since he is a boy and will have short hair. also the younger they are when you get the helmet the better the results.
i'm not saying you should get the helmet, you need to do what you feel is right, but just wanted to let you know it wasn't as bad as i thought it would be. it is a tough decision. 
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| Posted 8/17/12 10:38 AM |
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maymama
my little loves
Member since 8/08 18453 total posts
Name:
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Re: tortocolis and misshapen head
I just wanted to point out that a helmet in most cases is not "totally cosmetic"...
Think about fitting your child for glasses or a bike helmet or a batting helmet! Correcting the plagiocephyl in your child will make fitting all of the above much easier in the future.
My niece (now almost 3) wore a DOC band from 9-12 month! My nephew (her brother) is actually being fitting for one TODAY at 6 months. They are very common, NOTHING to be embarassed about!
If you have any questions, I can get you in contact with my sister... she has been through it all with "helmets"
Message edited 8/17/2012 10:41:55 AM.
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| Posted 8/17/12 10:41 AM |
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jes81276
summer fun!
Member since 3/06 4962 total posts
Name:
Jaime
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Re: tortocolis and misshapen head
DS was a preemie too, and same thing happened. At 4.5 years old, his head is still a bit flat on one side. I'm totally okay with it.....it's really not noticeable to anyone except us.
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| Posted 8/17/12 10:48 AM |
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Seta
LIF Adolescent
Member since 1/07 566 total posts
Name:
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Re: tortocolis and misshapen head
I just went through this too..I was getting mixed opinions from both peds in my practice..so i went on the recc. of one of the ped who was "pro-helmet" to Monroe Ortho...who scared the crap at of me and told me my son may have tortocolis and severe plagiocephaly.
After reccs from moms on here to go to a neuro we made an apt. with dr. mittler at lij who was very helpful. Yes, it can be more than cosmetic, which dr. mittler assured us that it wasn't anything more serious. He also said there was no tortocolis and that his plagiocephaly was mild to moderate. So the Monroe place, I feel was alarming me to make $$. Dr. Mitler did say it was our choice to put him in a helmet but felt it wasn't necessary and that we should reposition him and get him off the flat side of his head as much as possible..which we are doing. ...with exersaucer/toys etc..
DH and I have fully accepted giving him one if needed, but for now are not sure if he needs it..we are going to work on repositioning him and reconsider in another month, since he is 20 weeks now....should we go forward we are going to use bay ortho...
Bottom line, get a neuro consult...it is worth the time.
Good luck to you...
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| Posted 8/17/12 11:01 AM |
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Bearcat
Love my little girls!!! <3
Member since 6/10 10818 total posts
Name:
E
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Re: tortocolis and misshapen head
DD had a flat spot on the back of her head, it was pretty significant - borderline helmet needed. She did not have tortocollis though. I don't want to scare you but I am pretty sure the helmet is NOT entirely cosmetic - I did a little research on this and it was my understanding that in SOME instances, the flat spot could lead to other cranial development problems, depending on the severity. So, IMO, I would not rule it out - IF it turns out to be necessary for you.
In any event, we had to keep DD off the back of her head as much as possible. If I recall correctly this was discussed w ped at her 5 month appointment. So we did a lot of jumperoo, bumbo seat, tummy time, AND she had to sleep/nap on her tummy. That was a hard adjustment, but now she can't sleep any other way, lol. She was rolling over by the time this instruction was given to us - I am not sure it would be recommended if your child can't roll over yet, so ask your dr. But anyway after just a month of doing this, the improvement was significant, so the decision was made that she did not need a helmet. Now, 5 months later, her head is not flat at all (although sometimes it's hard to tell with all of her hair!)
So yes sometimes it can be corrected w/o a helmet but it definitely depends on the child's age (hardness of skull is a factor) and severity.
Good luck
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| Posted 8/17/12 11:01 AM |
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maybesoon
LIF Adult
Member since 9/09 5981 total posts
Name:
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Re: tortocolis and misshapen head
We used noggin nest for my ds nd his flat spot went away on its own
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| Posted 8/17/12 11:05 AM |
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MrsDrMatt
Live and RUN like a Ninja!
Member since 5/06 3104 total posts
Name:
MrsDrMatt
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Re: tortocolis and misshapen head
Why risk your child having a misshapen head for the rest of their lives. Small sacrifice now... Listen to your Dr.
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| Posted 8/17/12 11:29 AM |
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Smileyd17
kids
Member since 5/05 20997 total posts
Name:
Mommy
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Re: tortocolis and misshapen head
my DS had tort and plagio (the flat head due to tort).
There was no option NOT to get a helmet.
Im so happy i did because even with helmet, he is not 100% and i cant imagine if I didnt get that helmet in what position he would be in now.
GL!
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| Posted 8/17/12 12:02 PM |
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alli3131
Peanut is here!!!!!!
Member since 5/09 18388 total posts
Name:
Allison
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tortocolis and misshapen head
My DS is 7.5 mons and was just released from his neurologist today. We started seeing the dr at 3 months cause of a flat spot. Dr didn't think it was bad enough for a helmet and we waited it out. His head is almost perfect now and no helmet was needed
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| Posted 8/17/12 12:05 PM |
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Finally1108
My two boys
Member since 12/08 3541 total posts
Name:
Angela
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Re: tortocolis and misshapen head
My son has both as well and after three months he finally had the helmet removed but is still receiving PT. The helmet did not bother him at all... since he is so young he doesnt understand and just thought the helmet was part of his everyday routine.
If you have any questions i will be more than happy to help you out. I am all for the helmet as I see such a difference in his head!
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| Posted 8/17/12 12:31 PM |
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phoenix913
LIF Adult
Member since 5/05 3034 total posts
Name:
V
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Re: tortocolis and misshapen head
My son also had a helmet and it really wasn't a big deal. It did not bother him one bit.
I would go get an evaluation from a neurologist just in case. That way you'll have all the facts and know for sure if your case would be just cosmetic. Then you can decide from there.
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| Posted 8/17/12 12:50 PM |
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skinny
3 boys and a princess!
Member since 11/08 8178 total posts
Name:
Momma
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Re: tortocolis and misshapen head
Please just go get it checked out. It can't hurt. Go see Dr. Mark Mittler. He is, IMO, the best dr out there. He isn't quick to recommend a helmet, but he'll be honest.
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| Posted 8/17/12 1:06 PM |
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Jillianm08
LIF Infant
Member since 1/09 113 total posts
Name:
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Re: tortocolis and misshapen head
Posted by Smileyd17
my DS had tort and plagio (the flat head due to tort).
There was no option NOT to get a helmet.
Im so happy i did because even with helmet, he is not 100% and i cant imagine if I didnt get that helmet in what position he would be in now.
GL!
This is my son exactly!!! I'm so happy we did it. He wore his from 7 months to 1 year and he didn't care at all 
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| Posted 8/17/12 3:08 PM |
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Domino
Always My Miracle
Member since 9/05 9924 total posts
Name:
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Re: tortocolis and misshapen head
I had concerns and basically my pediatrician blew me off telling (lecturing) me that he needed more tummy time. Finally after the third well visit in a row she agreed to give me the name of a neurologist but she followed it up with "make sure to let me know what he says after he laughs at you." so I never made the appointment. At 3 DS' head is still flat (not as bad as it was) and I kick myself for not following my mommy gut.
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| Posted 8/17/12 4:32 PM |
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PreshusSmurf
So in love with my little guys
Member since 1/07 2963 total posts
Name:
Jess
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Re: tortocolis and misshapen head
This may sound harsh but you need to get over your own fears and self consciousness and do the right thing for your child.
Have a consult. Get him evaluated.
My twins had tort and plagio. They were in helmets and received PT. It was the best thing I could have done or them as their mommy.
It is our job as their mommies to do everything possible to give them the best start in life. Sometimes it's hard choices and not taking the easy way out.
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| Posted 8/17/12 4:58 PM |
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Karen
Just chillin'!!
Member since 1/06 9690 total posts
Name:
Karen
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Re: tortocolis and misshapen head
Posted by PreshusSmurf
This may sound harsh but you need to get over your own fears and self consciousness and do the right thing for your child.
Have a consult. Get him evaluated.
My twins had tort and plagio. They were in helmets and received PT. It was the best thing I could have done or them as their mommy.
It is our job as their mommies to do everything possible to give them the best start in life. Sometimes it's hard choices and not taking the easy way out.
Totally agree. DS wore one from 6 months - 1 year and was in PT for even longer. He barely noticed it and it didn't disrupt his routine at all.
I am not sure who told you the helmet was "totally cosmetic" - that is 100% false.
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| Posted 8/17/12 5:03 PM |
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skinny
3 boys and a princess!
Member since 11/08 8178 total posts
Name:
Momma
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Re: tortocolis and misshapen head
Posted by PreshusSmurf
This may sound harsh but you need to get over your own fears and self consciousness and do the right thing for your child.
Have a consult. Get him evaluated.
My twins had tort and plagio. They were in helmets and received PT. It was the best thing I could have done or them as their mommy.
It is our job as their mommies to do everything possible to give them the best start in life. Sometimes it's hard choices and not taking the easy way out.
You said what I've been trying to type.
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| Posted 8/17/12 5:28 PM |
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PreshusSmurf
So in love with my little guys
Member since 1/07 2963 total posts
Name:
Jess
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Re: tortocolis and misshapen head
Posted by skinny
Posted by PreshusSmurf
This may sound harsh but you need to get over your own fears and self consciousness and do the right thing for your child.
Have a consult. Get him evaluated.
My twins had tort and plagio. They were in helmets and received PT. It was the best thing I could have done or them as their mommy.
It is our job as their mommies to do everything possible to give them the best start in life. Sometimes it's hard choices and not taking the easy way out.
You said what I've been trying to type.
Thank you. I'm glad to hear I'm not alone in my feelings on this.
OP, I really really really hope you consider getting an evaluation.
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| Posted 8/20/12 8:55 PM |
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pinkiegirl
Member since 7/07 2160 total posts
Name:
Dana
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Re: tortocolis and misshapen head
Message edited 8/21/2012 10:48:00 AM.
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| Posted 8/21/12 10:46 AM |
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pinkiegirl
Member since 7/07 2160 total posts
Name:
Dana
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Re: tortocolis and misshapen head
Posted by skinny
Posted by PreshusSmurf
This may sound harsh but you need to get over your own fears and self consciousness and do the right thing for your child.
Have a consult. Get him evaluated.
My twins had tort and plagio. They were in helmets and received PT. It was the best thing I could have done or them as their mommy.
It is our job as their mommies to do everything possible to give them the best start in life. Sometimes it's hard choices and not taking the easy way out.
You said what I've been trying to type.
Me too. DS had mild torticollis and plagio. Got PT twice a week and wore his helmet for 4.5 months. He outgrew his first helmet before the correction was complete, so we had to get a second one with 6 weeks left. I dont think twice about our decision. DS could have cared less... he still slept through the night and napped and was a happy baby.
Looking at him now you would never know his head was 13 millimeters off from the other side.
Plenty of people said we were crazy to "make him wear that" and that it would probably correct on its own.
I even had someone on Facebook post "OMG, what is wrong with you son?" People are stupid.. it's the year 2012.. this condition is so common now a days because babies sleep on their bellies, etc.
We did what we thought was best and it was.
I hope OP at least takes her baby for a consult to see where they are at.
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| Posted 8/21/12 10:48 AM |
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nferrandi
too excited for words
Member since 10/05 18538 total posts
Name:
Nicole
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Re: tortocolis and misshapen head
My tenants son had this issue and is presently getting services. Hs head has rounded at on it's own as he has gained strength and then started sitting up more. He had low muscle tone on one side, but you would never know it now.
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| Posted 8/21/12 11:05 AM |
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cheryl28
LIF Adult
Member since 2/10 4657 total posts
Name:
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Re: tortocolis and misshapen head
Posted by maybesoon
We used noggin nest for my ds nd his flat spot went away on its own
I was going to say this. We bought and anytime dd was laying down, not in car, she was on that. She had a pretty bad flat spot, a slight case of tortocolis. My doctor showed me stretches to do and it worked. Her head is perfectly fine now. At night I would move her head to the opposite side.
If a helmet is necessary, it's only for a short period of time and from what I can tell it has never bothered any kids.
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| Posted 8/21/12 12:06 PM |
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