Re: Our story please help and advise

July 24, 2009

Hi Cara,

Don't worry, those feelings are completely normal. My wife and I feel bad that

we did not know more, but honestly I don't think pediatricians and doctors know

enough yet to advise people regarding the importance of tummy time. I think all

new parents should be warned of torticollis and plagiocephaly and how best to

avoid problems. We had no clue and we even read lots of books during my wife's

pregnancy. Some doctors just do not believe in the band, but I believe it is a

big mistake to not be proactive. Better to use it than wait until they are 2

years old and realize nothing can be done.

Our son has torticollis as well and plagiocephaly. We went to occupational

therapy for his torticollis, but can no longer go since we reached our 20 visit

annual limit. The visits helped, but not as much as persistent at-home

exercises and in reality we didn't notice much difference until our son could

sit up and roll over on his own. We only really work on two exercises, one to

turn his head to the right and the other to bend his head to his left shoulder,

each once or twice per day. Our son has been in the Hanger orthotic for almost

3 weeks and the orthotist told us two days ago he was getting better

surprisingly fast. We are very encouraged. His ears however are asymmetrical

and they say they will probably not improve for years, not until he reaches 12

or so, which is understandable now that I know more about plagiocephaly.

Before the orthotic we would rotate our sons head once before we went to bed,

not sure if it helped much, but it possibly reduced the rate at which things got

worse. Once our son got the helmet we stopped rotating his head within a week,

partially because he moves his head around a lot now anyway and also because the

head rotation does not matter from a plagiocephaly standpoint anymore. The

weight is distributed pretty evenly across the helmet so the pressure points are

not as direct thereby preventing worsening of the plagiocephaly. If you feel

that you need to rotate the head to help the torticollis and stretch the muscles

a little, then I can understand that but given your baby will not stay asleep I

would avoid it. I am sure this is tough as I know how hard it was to watch our

son go to sleep with his head turned the " wrong " way, but have faith in the

band, it will do it's job and the torticollis will get better. Unfortunately,

these conditions really go hand in hand and it's tough to fix one without the

other.

To help with the torticollis though, I would get a referral for occupational

therapy visits to get that started on the right track so you feel more

comfortable with your exercises at home and to get an opinion from a therapist

who is experienced with torticollis.

I think that covers it! Best of luck!

-

>

> Hello,

>

> My name is Cara and I have a six and a half month old baby girl Lia. About 4

months ago I noticed that my baby's head was flat and brought it to the

attention of my pediatrician she said that it was positional plagiocephaly and

to not lay Lia on her head as much and give her plenty of tummy time. Since my

baby was 5 weeks old she has been an excellent sleeper she slept in her swing

(which now if I knew would never have allowed) and slept 8 hours at night (and

she is an exclusively breast fed infant)! Needless to say we were thrilled but

noticed that her head was getting worse. Lia's doc said to take her out of the

swing immediately and to put her in her crib. We did so and it it took about a

week for Lia to adjust but she was fine and continued to sleep through the

night. At Lia's 4 month visit (which was actually at 5 months) since her doc's

office didn't have any openings until that time I again discussed with Lia's

doctor the fact that Lia is only allowed to be on her back for sleep now and

that we always keep her on her tummy, her exersaucer or her bumbo seat all the

other times and when we go out we remove her as quickly as possible from her

carseat but her head is still persistently flat and her ears are now sticking

out and uneven. The doc said not to worry that her head would fix itself as it

grows and her ears if she didn't grow into them she could always have surgery

later down the road. Needless to say I wasn't comfortable with this response and

asked for the specialists name and number and called myself to make an

appointment. Once we arrived he too told me that if we were to do nothing Lia's

head would improve and that she has torticollis as well and that we needed to do

stretching exercises. He gave me a referral to Cranial technologies to get a

consultation for a docband. I went and they said Lia would definitely benefit

from the band. After dealing with insurance issues Lia is going to be fitted on

8/11 and will get her band on 8/25. I feel really bad about all of this like its

my fault. I also so scared that she will look abnormal and children will pick on

her. I am not superficial and do not mean to sound superficial but I just want

her to have a happy life and not be picked on for something I as her mother

should have been better informed about and prevented. Is it normal to feel this

way and does it get better?

>

> Also, she still sleeps 12-13 hours a night now and refuses to let me turn her

head off of her flat spot. I have tried several nights and she wakes up

screaming and won't go back to sleep for hours. I feel terrible waking her up

every couple of hours and its also very ineffective because she won't keep her

head in the other position. I bought a sleep positioner and our pediatrician

told us not to use it EVER and Never put anything in her crib with her. If she

gets her band and refuses to sleep in a different position will it still help

her head? Does anyone have any other ideas what to do? Also, please advise about

tortiocollis I was only given exercises to do at home and I don't think I am

qualified to be the only person to treat this. Please help. Thanks.

> Cara

>

July 24, 2009

Hi Cara,

We've had a very similar experience with our son, who is also 6.5 months now. We

noticed the flatness at about 7-8 weeks, didn't get much help from pediatrician

or specialist...just a couple of stretching exercises for the torticollis and

the encouragement that all of this would likely resolve on its own. I haven't

been on this board for too long myself, but that seems to be a common thread

running through many parent's stories. Anyway, we kept him off of his head as

best we could, repositioned as best we could and none of that helped. Like your

daughter, Cade would move right back to that flat spot to sleep (his favorite

position) or cry because we woke him up. It was frustrating. We went on our

own to Cranial Tech at end of May and he got his DOC Band on 6/18. Yesterday

marked our fifth week in the band. He's doing great in it - adjusted easily and

his head already looks so much better. We, too, wish we had known about

torticollis and plagio but we didn't...and now we're doing everything we can to

resolve it so it won't be an issue for him later. When you start to see her

progress and improvement once she's in her band, I think you'll start to feel

better, too...and you'll be so encouraged when that little flat area starts to

look round again.

One thing I didn't see mentioned in your post below was anything about physical

therapy for the torticollis. It doesn't sound like that has been recommended

yet. It was for us, and while we only go once a month, we come home with lots of

different stretches to work on. And then the PT can check his progress after a

few weeks and give us more to work on. That has really helped us - and I think

also improved his flexibility and rotation tremendously. We do LOTS of

stretching at home...sometimes it feels like that's all we do! He no longer

favors that right side for sleeping...still sleeps on it some, but about half

the time, he's turned to his left side. I feel pretty sure that's because of all

the stretching we've done and continue to do. Now he CAN turn comfortably to his

left, something he couldn't do before. Amy at Cranial Tech here in Austin also

gave us some good stretches to do - so you might ask them about that at your

next appointment. My understanding is that with the helmet on, they can sleep

on that flat side and it won't get worse. That's nice to know...but I still

cringe a little when he's on his right side even with the helmet. Habit, I

guess...after worrying about it for several months prior to banding. :-)

Hope some part of our experience is helpful to you. Once she gets going in the

band and you start to see things improving, I really think you're going to feel

so much better. So hang in there...and let us know how you're doing in a few

weeks!

Jill

Cade's mom, 6.5 mo, DOCBand 6/18/09

Austin, Texas