Re: New to the group / have so many concerns

[Guest guest]

Hey Sandy,

It sounds like Sydney and Remy have/had the same amount of

severity! Moderate brachy is certainly worth addressing, whether

through aggressive repo or with a band. I don't know if you could

tell from Remy's progress photos, but she had a ton of hair at

birth, and a headful when we started repo at 5 months. I felt her

brachy was quite noticeable, even with all the hair. She has a

whirligig-looking cowlick right at the top, back of her head, which

meant that her hair didn't fluff out straight back at all - it just

added to the super-flat look. I have a short video I took of her

just after 4 months old where I am holding on to one of her hands

and helping her sit up; there is a brief side view of her head, and

it's really shocking. If I can find out how to capture one frame,

I'll add it to her progress folder.

By some miracle, right at 5 months of age when we started repo, Remy

started sleeping on her sides all of her own accord! I can not

express to you what a tremendous help that was to her repo. Perhaps

Sydney is fast approaching the age where she will accept some sleep

position variety; keep trying! Are you waiting until she is totally

asleep before putting her in the crib? If she has a real adversion

to the sleep positioner, what about just one wedge, teeny pillow, or

rolled up cloth attached to one side of the pjs? There are some

excellent pics of these ideas in the Files/Repo Headquarters/Repo

Photos. Let us know if you talk to the ped about side sleeping, and

what they say.

We saw noticeable change in a couple of weeks. Certainly if you can

get compliance for nighttime repo, Sydney should manifest some

change in a couple of weeks. Have you checked out the Files/Repo

Headquarters/Repo Techniques folder? I wrote a document in there on

the importance of and tips for assessing repo progress that might be

of help. It's very helpful to have good top and side view photos of

your brachy baby prior to starting repo, so that you have something

to compare it with when you check for progress a week later. You'd

be surprised how trying to eyeball it can sometimes convince you

rounding has happened when it hasn't, and, on the other side of the

coin, makes you think repo isn't working, when rounding is

happening! Like many brachy babies, Remy's correction began first

as a " popping out " sort of thing at the bottom back of her head. At

the same time the " point, " if you will, at the crown of the head

where excessive height manifests itself, showed some softening of

the angle. These two areas may likely be the first places you could

see some improvement with repo. I was surprised, since I expected

an even rounding all over the flat area, but that isn't how it

happened. It was a lumpy, bumpy road to roundness.

We were able to make it through repo because we felt as if we had no

other treatment choice, so we gave it our all. 6-7 hours from the

nearest FDA approved band (that we knew of) was not a realistic

option for us at the time, so our banding choices were two locally

made helmets that were not FDA approved. I could find no one in

this group who had completed treatment at either location. I was

also confounded by the protocol of one of the products, which was to

provide the parents with a 2 piece cap, and never have any follow-up

appts. at all for adjustments or assessment. In the end, I felt as

if I could, and had to, do better with my own two hands and

dedication than these options. At our 8 month old repo deadline, I

was relieved that I didn't have to pull the trigger on one of the

helmet options. Repo was totally exhausting. Our success was

hinged on the fact that we had no other children, both worked

opposite shifts so we could cover the entire 24 hour day, and my

intermittant screaming at my husband, " She's on her flat spot!!!! "

like a lunatic, lol. Remy also took every nap in my arms for 3

straight months while I placed the bulging side of her head against

my breastbone. This, combined with her successful nighttime repo,

were critical to getting results. We were so, so exhausted after

all this repo.

My insight into your situation, is that Sydney's nighttime repo

success or no success will likely determine whether you go ahead and

proceed with the band, or repo for 4 weeks. I think you will know

long before 4 weeks are up, if you are able to get her off of the

back of her head at night. If you are able to, then you can check

progress in a couple of weeks and see if there are any changes. If

she just can't adjust to any position but back sleeping (so common

with our brachy babies - they are so comfy on the back of their

head,) that you will need to weigh risk of worsening vs. going ahead

with the band.

More later, I can not believe I'm still up,

Christie (Mom to Repo'd Remy)

> >

> > Hi,

> >

> > I just learned about this group today and joined. I'm so happy

I

> > found this. At my daughter's 4 month checkup yesterday, her dr.

> > recommended the DOC band. She has a flat head - it doesn't look

> > asymmetrial, it's just very flat in the back.

> >

> > I have a few questions for those who have experience with this:

> >

> > 1) Does aggressive repo help for flat heads (without tort)? If

> so,

> > what has helped and how long did it take?

> >

> > 2) Has anyone opted to not get the band and the repo did the

trick

> or

> > do you regret not getting the band earlier?

> >

> > 3) My daughter sleeps with her head back, facing the ceiling.

She

> > NEVER turns her head to the left or right. I try to turn her

head

> but

> > she always turns back. Are there any tricks you have found to

> help

> > this?

> >

> > 4) Has the memory foam worked for your baby? I bought one today

> and

> > will try it out.

> >

> > 5) Have there every been any bad effects associated with using

the

> > band?

> >

> > Thanks!

> >

> > Sandy

> >

>

>

>

>

>

>

> For more plagio info

[Guest guest]

Hey Sandy,

It sounds like Sydney and Remy have/had the same amount of

severity! Moderate brachy is certainly worth addressing, whether

through aggressive repo or with a band. I don't know if you could

tell from Remy's progress photos, but she had a ton of hair at

birth, and a headful when we started repo at 5 months. I felt her

brachy was quite noticeable, even with all the hair. She has a

whirligig-looking cowlick right at the top, back of her head, which

meant that her hair didn't fluff out straight back at all - it just

added to the super-flat look. I have a short video I took of her

just after 4 months old where I am holding on to one of her hands

and helping her sit up; there is a brief side view of her head, and

it's really shocking. If I can find out how to capture one frame,

I'll add it to her progress folder.

By some miracle, right at 5 months of age when we started repo, Remy

started sleeping on her sides all of her own accord! I can not

express to you what a tremendous help that was to her repo. Perhaps

Sydney is fast approaching the age where she will accept some sleep

position variety; keep trying! Are you waiting until she is totally

asleep before putting her in the crib? If she has a real adversion

to the sleep positioner, what about just one wedge, teeny pillow, or

rolled up cloth attached to one side of the pjs? There are some

excellent pics of these ideas in the Files/Repo Headquarters/Repo

Photos. Let us know if you talk to the ped about side sleeping, and

what they say.

We saw noticeable change in a couple of weeks. Certainly if you can

get compliance for nighttime repo, Sydney should manifest some

change in a couple of weeks. Have you checked out the Files/Repo

Headquarters/Repo Techniques folder? I wrote a document in there on

the importance of and tips for assessing repo progress that might be

of help. It's very helpful to have good top and side view photos of

your brachy baby prior to starting repo, so that you have something

to compare it with when you check for progress a week later. You'd

be surprised how trying to eyeball it can sometimes convince you

rounding has happened when it hasn't, and, on the other side of the

coin, makes you think repo isn't working, when rounding is

happening! Like many brachy babies, Remy's correction began first

as a " popping out " sort of thing at the bottom back of her head. At

the same time the " point, " if you will, at the crown of the head

where excessive height manifests itself, showed some softening of

the angle. These two areas may likely be the first places you could

see some improvement with repo. I was surprised, since I expected

an even rounding all over the flat area, but that isn't how it

happened. It was a lumpy, bumpy road to roundness.

We were able to make it through repo because we felt as if we had no

other treatment choice, so we gave it our all. 6-7 hours from the

nearest FDA approved band (that we knew of) was not a realistic

option for us at the time, so our banding choices were two locally

made helmets that were not FDA approved. I could find no one in

this group who had completed treatment at either location. I was

also confounded by the protocol of one of the products, which was to

provide the parents with a 2 piece cap, and never have any follow-up

appts. at all for adjustments or assessment. In the end, I felt as

if I could, and had to, do better with my own two hands and

dedication than these options. At our 8 month old repo deadline, I

was relieved that I didn't have to pull the trigger on one of the

helmet options. Repo was totally exhausting. Our success was

hinged on the fact that we had no other children, both worked

opposite shifts so we could cover the entire 24 hour day, and my

intermittant screaming at my husband, " She's on her flat spot!!!! "

like a lunatic, lol. Remy also took every nap in my arms for 3

straight months while I placed the bulging side of her head against

my breastbone. This, combined with her successful nighttime repo,

were critical to getting results. We were so, so exhausted after

all this repo.

My insight into your situation, is that Sydney's nighttime repo

success or no success will likely determine whether you go ahead and

proceed with the band, or repo for 4 weeks. I think you will know

long before 4 weeks are up, if you are able to get her off of the

back of her head at night. If you are able to, then you can check

progress in a couple of weeks and see if there are any changes. If

she just can't adjust to any position but back sleeping (so common

with our brachy babies - they are so comfy on the back of their

head,) that you will need to weigh risk of worsening vs. going ahead

with the band.

More later, I can not believe I'm still up,

Christie (Mom to Repo'd Remy)

> >

> > Hi,

> >

> > I just learned about this group today and joined. I'm so happy

I

> > found this. At my daughter's 4 month checkup yesterday, her dr.

> > recommended the DOC band. She has a flat head - it doesn't look

> > asymmetrial, it's just very flat in the back.

> >

> > I have a few questions for those who have experience with this:

> >

> > 1) Does aggressive repo help for flat heads (without tort)? If

> so,

> > what has helped and how long did it take?

> >

> > 2) Has anyone opted to not get the band and the repo did the

trick

> or

> > do you regret not getting the band earlier?

> >

> > 3) My daughter sleeps with her head back, facing the ceiling.

She

> > NEVER turns her head to the left or right. I try to turn her

head

> but

> > she always turns back. Are there any tricks you have found to

> help

> > this?

> >

> > 4) Has the memory foam worked for your baby? I bought one today

> and

> > will try it out.

> >

> > 5) Have there every been any bad effects associated with using

the

> > band?

> >

> > Thanks!

> >

> > Sandy

> >

>

>

>

>

>

>

> For more plagio info