Re: Repositioning - New Member - SC

[Guest guest]

na had her appointment at CT today. My MIL went with me - DH

had to work. She has plagio. It wasn't in my head - that is the bad

news. The good news is it's not severe. She has 11 mm head

asymmetry, 9 mm ear asymmetry, and slight right head tilt (SCM -

Sternocleidomastoid - same as tort?). We met with in the

Charlotte office. She was very nice. She showed me how to do the

neck exercises. She said she had to keep reminding herself na

was not quite 3 months old because she is big for her age and she

holds her head up very well (lots of tummy time in the past 4

weeks). thinks we may get some ear correction with the

exercises alone, but most likely not enough. She also noticed

na's jaw was slightly askew which I hadn't seen. I also didn't

think she had a head tilt but she does.

We were very happy with the whole process. They took measurments and

photos for insurance. They didn't want us to have to drive the 3

hours one way just for pics. In the info packet they gave us it says

infants under 7 months go in once a week. Thankfully thought

she would only need to be banded for 6 - 10 weeks. That could be 12

visits to Charlotte. There goes all of my vacation. I'm glad I

didn't take it earlier this year.

Tomorrow I will talk to the ped about a RX and letter of medical

necessity.

mom to na (soon to be a banded babe)

--- In Plagiocephaly , " Filyaw " <filyaw@b...>

wrote:

> Hi ,

>

> na has an appointment with CT in Charlotte on Monday at 1:15

PM. My husband and mother-in-law are going with us. We'll be

staying at my husband's Aunt's house in Columbia Sunday night so it

will only be a short 1 hour drive Monday. The way home will be

longer, about 3 hours.

>

> I spoke with my dr's nurse today. I told her I had done some

research, wasn't seeing much improvement, my anxiety level was rising

and that CT offered free evaluations. I asked for the RX for

the " range of motion " . She relayed everything to the Dr and called

me back with the RX ready to go. She was very understanding about my

anxiety. It was much easier than I anticipated.

>

> As far as repositioning goes... She pulled the rolled up blanket

over her head during a nap on Tuesday. So, no more rolled up

blankets. I'm waiting for the light weight sleep sacks to come in so

I can velcro a positioner to them. We got industrial strength velcro

LOL. If I use the bouncy seat or swing I position a rolled up burp

cloth under her shoulder and try and get her off the flat spot. We

just got the Boppy noggin nest in the mail today so we'll see how

that helps. She's been doing so much tummy time she actually rolled

over on Sunday and Monday (she'll be 3 months old on the 11th). Her

hair is staring to thin a little on the non-flat side. So I guess we

are getting her repositioned to some degree.

>

> Thanks for the advice. It's so wonderful to chat with parents who

have the same worries.

>

>

>

> Florence, SC

>

> na almost 3 months!!

> Re: Repositioning - New Member - SC

>

>

> Hi and welcome to the group.

> My son was was also diagnosed at 2 months. We tried repo for 2

> months with little improvement. At his 4 month checkup the

doctor

> referred us to a ped. neurosurgeon. We had to wait 2 months for

the

> appointment. He was banded at CT in NJ, at 7 months for 12 weeks

> with good results. I understand your concern about wanting to

get a

> move on with treatment. Waiting for appointments, insurance

> approvals and eventually the helmet can sometime take a while.

Let

> your doctor know what you've found out online and you'd like to

have

> your daughter evaluated sooner. It sounds like he knows

something

> about plagio(which is better than most of the doctors out there)

so

> he should be supportive.

>

> You've been doing a great job so far. Repo is tough at night,

> especially if she's active. As far a day time, you can keep her

on

> her back for a short time. Just try to get her to turn her head

off

> the flat spot, by putting toys and other things she likes on the

> opposite side. This helped with my son, who absolutely hated

tummy

> time.

>

> Good luck and keep us posted.

>

> mom to Jake 14mo(doc band grad 4/03)

> and Tyler 3yrs.

>

>

> --- In Plagiocephaly , " monicash " <filyaw@b...>

wrote:

> > Hi,

> > I've been reading the posts for a few days now. I found this

group

> > from a very helpful poster (Rhonda Gillespie) on the

Babycenter.com

> > bulletin board. So here is my story with some questions mixed

in.

> > TIA.

> >

> > My dd is 2 1/2 months old (6/11/03). We noticed the flat spot

> right

> > before her 2 month check-up. Looking back at pics we could see

it

> > had been there all along (she dropped early and came out with a

> > crooked nose). The dr (we go to a family doc not a ped) agreed

it

> > was there and wanted us to try repositioning until her 4 month

> check-

> > up (10/30/03). He said he had had to refer a couple other

patients

> > in the past. If it was still a problem he would refer us to a

> > neurosurgeon. Of course he didn't really give me any

repositioning

> > advice except use a rolled up blanket to keep her off the flat

> spot,

> > limit swing, bouncy seat and car seat time, and encourage tummy

> > time. Don't get me wrong I love this dr. Since he knows me so

> well

> > he probably didn't want to alarm me. But I'm an engineer I

need

> > drawings, pictures, step by step - something concrete. I

hadn't

> done

> > much research before the appt so I didn't know what to ask.

Now,

> I'm

> > almost paranoid and much more informed.

> >

> > Well we've been trying a number of things but I have a wiggle

worm

> on

> > my hands. She turned 180 degrees in her bed last night, most

> nights

> > it's just 90 degrees or 1 foot in a straight line up or back.

We

> > tried a positioner (back-n-head from One step ahead) but she

hated

> it

> > and couldn't sleep, besides she scooted out of it (don't ask me

> > how). Two days of very little sleep was enough to make me want

to

> > try something new. So, any ideas. I've seen the idea with the

> sock

> > and the onesie. We have central air and I think she would be

> cold.

> > Right now she sleeps in a footed sleeper. Has anyone tried

making

> > something to fit over their clothes to position them?. Also,

what

> > kind of stuffing for the sock so it is washer safe? She moves

away

> > from the rolled up blankets. She doesn't seem to like

confinement.

> >

> > Is it ok to let her lay on her back for 15-20 minutes a day

just to

> > get the kicking and wiggling out of her system? She loves to

lay

> > under her activity gym and bat away. We're doing better with

tummy

> > time. She's still very young, but her head control has

improved

> > tremendously in the past 2 weeks. She can do about 15 minutes

at a

> > time now and we try to do it 3 times a day. The boppy tummy

time

> mat

> > is a big hit (it was hard to find because I think it has been

> > discontinued). I've got a noggin head nest on order. I live

in a

> > small town and just can;t find much locally. I also use my

baby

> > bjorn carrier whenever I can but again she's limited to aobut

15

> > minutes. She gets tired after holding her head up continuously

for

> > 15 minutes. She doesn't like to face me in the carrier (she

> cries).

> > She loves to face the world, so that's why she gets tired.

> >

> > Well I couldn't just sit by and wait until 10/30, her 4 month

> check.

> > Especially after reading the best opportunity is between 4-7

> months.

> > We haven't seen any improvement and she is a tough one to

> > reposition. So I called CT today and made an appointment for a

> > consultation (Charlotte, NC 9/8). It's a 2 1/2 hour drive. At

> least

> > I will know if I'm overreacting. I used the CT plagio

checksheet

> and

> > I think she is between a 4-8 (out of 15). I believe her ears

are

> > misaligned, there is some facial asymetry, the flat spot on the

> back

> > left and some forehead protrusion on the left. I'm not sure

about

> > the neck muscles. They said I should get a RX for range of

motion

> > from the Dr before we come. I don't want my dr to think I

second

> > guessed him. Any advice on how to approach him? I was just

going

> to

> > explain my lack of patience when it comes to the well-being of

my

> > dd. None of my neices and nephews had this problem and I knew

to

> > rotate her sleeping positions from day 1 (which we did).

> >

> > Here are some links to our home page and close up pics of DD,

> na.

> >

> > http://home.bellsouth.net/p/pwp-filyaw

> > http://www.dotphoto.com/go.asp?l=filyaw & p=head & AID=990463

> >

> > Thanks,

> >

>

>

>