torticollis

September 14, 2005

Angie... I don't have direct experience with torticollis- but our friend's

daughter was born with it. You could always see her head a bit tilted when she

was really small. Her mom was supposedly doing stretches with her at home, but

never any improvement (I think she got a bit lazy). She said she would cry all

the time when she did it, so she stopped. She is now 18 months and just started

walking. She is falling over all the time because she is always leaning to one

side. Her mom now finally takes her to physical therapy, but it is only once a

week and she says she does the rest at home. I feel really bad for her because I

think an injustice has been done to this poor child. I always tell her, if I

didn't but 's brace on every time he cried, he would have relapsed and

wouldn't be able to walk and he would have to start his treatment all over

again. I think u are doing the right thing and trust me... keep up with it. You

don't want to be in the same situation. Good job )

2/9/04 BLCF

and Porter wrote:

I haven't been here in a while, but my son Bryce, 8 months right club

foot, it doing awesome. Dr. Maples is wonderful and he has done

wonderful. About 2 months ago though, she noticed that he held his

head a little crooked. I had noticed it, but didn't really think

anything about it. She said that he had Torticollis. She gave me

stretches to do at home, but my family doctor referred me to a PT. We

have gone for a week now, 3 times per week, and can see a little

improvement. He seems to tollorate looking towards his tight side

more and longer than he did before. Does anyone have any experience

with this? Dr. M said that she sees it a lot with club foot. What I

have read is that it can be a genetic thing or have to do with a

muscle injury during child birth. The latter fits more due to his

child birth history.

Thanks,

angie

2

Bryce 8 months RCF

September 14, 2005

My son (the one with clubfeet) also had this, but his was mild. I

brought it up to his pediatrician and we just did things like after

he fell asleep I would move his head looking in the other direction

and while changing his diaper I would put interesting things to look

at on the side he needed to look towards. That's all we ever had to

do, but like I said his was very mild and we noticed it very early.

I have a friend and her baby was born with this (as a matter of fact

I was the one who noticed it and brought it up to them). She has

been going to PT and it seems to be getting better, but her head has

also became mishapen and she is going to have to wear a helmet for

that. Good luck with his treatment.

Pam and (8-12-01)

> I haven't been here in a while, but my son Bryce, 8 months right

club

> foot, it doing awesome. Dr. Maples is wonderful and he has done

> wonderful. About 2 months ago though, she noticed that he held his

> head a little crooked. I had noticed it, but didn't really think

> anything about it. She said that he had Torticollis. She gave me

> stretches to do at home, but my family doctor referred me to a PT.

We

> have gone for a week now, 3 times per week, and can see a little

> improvement. He seems to tollorate looking towards his tight side

> more and longer than he did before. Does anyone have any

experience

> with this? Dr. M said that she sees it a lot with club foot. What

I

> have read is that it can be a genetic thing or have to do with a

> muscle injury during child birth. The latter fits more due to his

> child birth history.

>

> Thanks,

> angie

>

> 2

> Bryce 8 months RCF

September 14, 2005

,

Hi! My 9-month-old (tomorrow!), also with right CF, has torticollis. He leans

his head towards the left. He has PT and OT (total of 5 times a week) and it

seems to have gotten somewhat better, but the most important thing is for you to

keep it up. HATES anyone touching his head and/or shoulders, so it's hard.

But, I get good stretches in when he falls asleep in my arms after his bedtime

bottle. I hold the stretch for 2 minutes or so. I also sometimes put his Baby

Einstein videos on and place him on his bouncey seat so that he has to look

towards his left and a bit up to see the TV.

Which side does Bryce lean to? I wonder if unilateral CF babies with

Torticollis tend to leand towards the opposite side....

Most recently I had noticed that he sits up kinda crooked, too. (Leans his body

towards the right.) Ends up he has congenital scoliosis. He has 3-5 fused

vertebrae in the lower thoracic area. I don't know if the torticollis is

related to this or what. That's a whole other story.

But, in any case, torticollis is not so uncommon--with CF babies and non-CF

babies.

Keep stretching.

12-15-04