Re: Second thoughts...listening to too may opinions!

[Guest guest]

Hi,

I have also had those same feelings. We haven't even been casted yet

because we've had conflicting reports about whether our daughter has

suture fusion or not, so we're going for a 2nd opinion. I doubted

myself for not believing the neurosurgeon and neuroradiologist when

they said her CT was clear with no fusion, yet there was one little

shred of doubt in my mind, and I knew if I didn't get it cleared out

of my head I would never have peace. You just have to trust yourself

and go with your gut feelings. I know I am delaying her treatment,

but I also know I'm doing what is best for her by being a good

advocate.

If you have doubt, try and find out why. Are you uncertain because

you aren't sure he needs the helmet and don't want to put him through

it, or are you uncertain because all these " professional " people are

putting that doubt there?

Good luck, you will do the right thing for your son!

Holly

Avery, 5 months

plagio/brachy

>

> DJ and I are scheduled for the casting Thursday in Houston at CT.

> We'll take the six-hour drive from New Orleans tomorrow evening.

Today

> when we visited DJ's regular pede for his 6-month shots, she made a

> comment about the helmet really not being necessary and actually

> uncomfortable for the baby. She's been saying all along that DJ's

head

> will round out on its own. All the doc we've seen (2 neurosurgeons,

2

> pedes and 1 cranial facial specialist), have pretty much said that

the

> helmet is " optional " . Why is that I am so afraid NOT to get the

helmet

> despite doctors' opinions? I'm afraid of missing the window of

> opportunity. On the other hand, I am still doubting myself and

> wondering if this is really the right decision. DJ's plagio/brachy

was

> diagnosed as moderate to severe. Have any of you been through

similar

> feelings? I guess I'm just looking for moral support:)

>

[Guest guest]

My advice is to get a new pediatrician!!! I think we all had doubts

when we were starting but my daughter got a starband at 5 months old

and has seen great correction. After 6 weeks sydney went from 100% to

93% (she has brachy and closer to <80% is normal). I can tell her head

looks great.

The helmet is a pain - but Sydney hardly notices it. Its just that we

have to clean it daily, make sure she's not too hot, put up with some

funny looks, etc. I don't doubt at all that it is worth it. Our cranio

facial plastic surgeon measured her at 4.5 mo, and told us we could

wait and see, or start the band right away. I'm so glad we started

right away.

I know its a lot of travel for you, but it will just be a few months

and then you'll know you did everything you can. If you don't do it,

you'll never be able to look at his head without wondering " what if " .

Also I've heard from other moms that they wish they started sooner to

catch more growth. This is a great time to start.

good luck & let us know how it goes.

-christine

mom to sydney/7 mo/ starband 5-31-06

>

> DJ and I are scheduled for the casting Thursday in Houston at CT.

> We'll take the six-hour drive from New Orleans tomorrow evening. Today

> when we visited DJ's regular pede for his 6-month shots, she made a

> comment about the helmet really not being necessary and actually

> uncomfortable for the baby. She's been saying all along that DJ's head

> will round out on its own. All the doc we've seen (2 neurosurgeons, 2

> pedes and 1 cranial facial specialist), have pretty much said that the

> helmet is " optional " . Why is that I am so afraid NOT to get the helmet

> despite doctors' opinions? I'm afraid of missing the window of

> opportunity. On the other hand, I am still doubting myself and

> wondering if this is really the right decision. DJ's plagio/brachy was

> diagnosed as moderate to severe. Have any of you been through similar

> feelings? I guess I'm just looking for moral support:)

>

[Guest guest]

IGNORE the docs. If YOU think that there is something up with your

child's head than most likely there is. If you can see it, others

can too they just don't want to look. It's not a big deal to the

docs b/c they all tell you it will round out. I do not know of one

single case that it has (with no work and hard repo at a younger

age) I think you are doing the right thing by having an eval done.

Let us know how it went.

Sandy Willow's Mom

Torticollis resolved 02/04

Cranio Germany Grad 02/04

> >

> > DJ and I are scheduled for the casting Thursday in Houston at

CT.

> > We'll take the six-hour drive from New Orleans tomorrow evening.

Today

> > when we visited DJ's regular pede for his 6-month shots, she

made a

> > comment about the helmet really not being necessary and actually

> > uncomfortable for the baby. She's been saying all along that

DJ's head

> > will round out on its own. All the doc we've seen (2

neurosurgeons, 2

> > pedes and 1 cranial facial specialist), have pretty much said

that the

> > helmet is " optional " . Why is that I am so afraid NOT to get the

helmet

> > despite doctors' opinions? I'm afraid of missing the window of

> > opportunity. On the other hand, I am still doubting myself and

> > wondering if this is really the right decision. DJ's

plagio/brachy was

> > diagnosed as moderate to severe. Have any of you been through

similar

> > feelings? I guess I'm just looking for moral support:)

> >

>

[Guest guest]

We saw our specialist here on the island and she was very

knowledgeable and supportive. My son's case of plagio is mild and

his head is rounding out. I have been repositioning him for two

months. He is 7 months now. She told me to continue this for a year

and I think it is making a difference. But again, his case is

considered mild now. Before, it looked pretty bad but I had to

research who could examine and diagnose my son, which took about two

months. So I am not sure what his situation was considered then.

There was a study in Pediatrics journal in 2004 that reported that

some children's heads did round out after two years.And that those

with helmuts had better results than those without. However, I do

not know how severe your child's plagio looks like and what you

expect your child's head will look like after the helmut. My doctor

told me that the ears do not always become symmetrical after the

helmut.

You have to trust your gut and also ask yourself, " Am I going to be

okay with this decision in a year? " . You are the parent in this

situation. It is your call. Good Luck.

>

> DJ and I are scheduled for the casting Thursday in Houston at CT.

> We'll take the six-hour drive from New Orleans tomorrow evening.

Today

> when we visited DJ's regular pede for his 6-month shots, she made

a

> comment about the helmet really not being necessary and actually

> uncomfortable for the baby. She's been saying all along that DJ's

head

> will round out on its own. All the doc we've seen (2

neurosurgeons, 2

> pedes and 1 cranial facial specialist), have pretty much said that

the

> helmet is " optional " . Why is that I am so afraid NOT to get the

helmet

> despite doctors' opinions? I'm afraid of missing the window of

> opportunity. On the other hand, I am still doubting myself and

> wondering if this is really the right decision. DJ's plagio/brachy

was

> diagnosed as moderate to severe. Have any of you been through

similar

> feelings? I guess I'm just looking for moral support:)

>

[Guest guest]

You have gotten many replies already, but I wanted to add that

doctor's opinions on banding seems to be influenced by their own

experience--both age and geography. I live in the Charlotte area

and the doctors around here seem to be pretty pro-banding, but then

we have a CT office right here and they can readily send a patient

and see the result. I also think older doctors (who put their own

children to sleep on their tummies) are sometimes not as well

educated as they should be about the whole issue.

I mostly wanted you to know that our son had severe brachy/moderate

plago and we never had any medical professional here question our

decision. We also never once have been told it would round out on

its own. (We were told this with our oldest son who had only mild

plagio.) Certainly it was optional in that they did not force us to

band him, but they did not question us as parents for pursuing

treatment. Five doctors is a lot, but also not that many in the

scheme of the whole country and the attitude of the medical

profession as a whole. I just wonder if you took your child and had

him seen by the same ped, PT and neurosurgeon we saw if they would

not say, " sure get a band! " That seems to be the frustration over

and over again on this board for so many parents. Sorry this turned

into a bit of a rant and sorry you are having a tough decision.

Stacey

> >

> > DJ and I are scheduled for the casting Thursday in Houston at

CT.

> > We'll take the six-hour drive from New Orleans tomorrow evening.

> Today

> > when we visited DJ's regular pede for his 6-month shots, she

made

> a

> > comment about the helmet really not being necessary and actually

> > uncomfortable for the baby. She's been saying all along that

DJ's

> head

> > will round out on its own. All the doc we've seen (2

> neurosurgeons, 2

> > pedes and 1 cranial facial specialist), have pretty much said

that

> the

> > helmet is " optional " . Why is that I am so afraid NOT to get the

> helmet

> > despite doctors' opinions? I'm afraid of missing the window of

> > opportunity. On the other hand, I am still doubting myself and

> > wondering if this is really the right decision. DJ's

plagio/brachy

> was

> > diagnosed as moderate to severe. Have any of you been through

> similar

> > feelings? I guess I'm just looking for moral support:)

> >

>

[Guest guest]

Our physical therapist and one of her co-workers actually put together a presentation on recognizing and treating torticollis and plagio that they give to local pediatricians and others in the medical profession who deal with infants. I thought that was a great idea. She said that they just got sick and tired of having kids referred to them when it was already too late to really help them. They say they've noticed that more babies are getting referred earlier as the doctors in our area realize that this problem won't "fix itself."Alison

Plagiocephaly From: oscaredwink@...Date: Wed, 26 Jul 2006 18:46:56 +0000Subject: Re: Second thoughts...listening to too may opinions!

You have gotten many replies already, but I wanted to add that doctor's opinions on banding seems to be influenced by their own experience--both age and geography. I live in the Charlotte area and the doctors around here seem to be pretty pro-banding, but then we have a CT office right here and they can readily send a patient and see the result. I also think older doctors (who put their own children to sleep on their tummies) are sometimes not as well educated as they should be about the whole issue.I mostly wanted you to know that our son had severe brachy/moderate plago and we never had any medical professional here question our decision. We also never once have been told it would round out on its own. (We were told this with our oldest son who had only mild plagio.) Certainly it was optional in that they did not force us to band him, but they did not question us as parents for pursuing treatment. Five doctors is a lot, but also not that many in the scheme of the whole country and the attitude of the medical profession as a whole. I just wonder if you took your child and had him seen by the same ped, PT and neurosurgeon we saw if they would not say, "sure get a band!" That seems to be the frustration over and over again on this board for so many parents. Sorry this turned into a bit of a rant and sorry you are having a tough decision.Stacey> >> > DJ and I are scheduled for the casting Thursday in Houston at CT. > > We'll take the six-hour drive from New Orleans tomorrow evening. > Today > > when we visited DJ's regular pede for his 6-month shots, she made > a > > comment about the helmet really not being necessary and actually > > uncomfortable for the baby. She's been saying all along that DJ's > head > > will round out on its own. All the doc we've seen (2 > neurosurgeons, 2 > > pedes and 1 cranial facial specialist), have pretty much said that > the > > helmet is "optional". Why is that I am so afraid NOT to get the > helmet > > despite doctors' opinions? I'm afraid of missing the window of > > opportunity. On the other hand, I am still doubting myself and > > wondering if this is really the right decision. DJ's plagio/brachy > was > > diagnosed as moderate to severe. Have any of you been through > similar > > feelings? I guess I'm just looking for moral support:)> >> With MSN Spaces email straight to your blog. Upload jokes, photos and more. It's free! It's free!

[Guest guest]

I wonder if they could forward that information to other peds via e-

mail?? That would be great if other offices were aware of the

benefits of early pt.

> >> > DJ

and I are scheduled for the casting Thursday in Houston at CT. > >

We'll take the six-hour drive from New Orleans tomorrow evening. >

Today > > when we visited DJ's regular pede for his 6-month shots,

she made > a > > comment about the helmet really not being necessary

and actually > > uncomfortable for the baby. She's been saying all

along that DJ's > head > > will round out on its own. All the doc

we've seen (2 > neurosurgeons, 2 > > pedes and 1 cranial facial

specialist), have pretty much said that > the > > helmet

is " optional " . Why is that I am so afraid NOT to get the > helmet >

> despite doctors' opinions? I'm afraid of missing the window of > >

opportunity. On the other hand, I am still doubting myself and > >

wondering if this is really the right decision. DJ's plagio/brachy >

was > > diagnosed as moderate to severe. Have any of you been

through > similar > > feelings? I guess I'm just looking for moral

support:)> >>

>

>

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[Guest guest]

You know what is best for your child......everyone else can offer

opinions but they won't have to second guess any decisions made down

the road. We felt the same way.....went ahead with it and have no

regrets.

Good luck!

Meagan

Nolan

DOC GRAD 3/06

>

> DJ and I are scheduled for the casting Thursday in Houston at CT.

> We'll take the six-hour drive from New Orleans tomorrow evening.

Today

> when we visited DJ's regular pede for his 6-month shots, she made a

> comment about the helmet really not being necessary and actually

> uncomfortable for the baby. She's been saying all along that DJ's

head

> will round out on its own. All the doc we've seen (2 neurosurgeons,

2

> pedes and 1 cranial facial specialist), have pretty much said that

the

> helmet is " optional " . Why is that I am so afraid NOT to get the

helmet

> despite doctors' opinions? I'm afraid of missing the window of

> opportunity. On the other hand, I am still doubting myself and

> wondering if this is really the right decision. DJ's plagio/brachy

was

> diagnosed as moderate to severe. Have any of you been through

similar

> feelings? I guess I'm just looking for moral support:)

>

[Guest guest]

I totally understand what you are going through. I didn't know if I

should put Isabella in her helmet. But she has been in her DOC Band

from CT for 3 weeks today and it has never bothered her. She is 6

months old this week and she sleeps great. She actually has made her

first milestone rolling over yesterday and her physical therapist

said the helmet would help make those milestones faster, along with

PT and tummy time and such. Go with YOUR gut. We did and it is the

best $3000 we have spent on our daughter (insurance didn't pay). The

drive is going to be hard and you must be committed to the

adjustments (we go weekly) but in the long run you will see

improvements in DJ's little head in a week. We did and we have been

very impressed with CT (Dallas). Isabella is 14mm off and should

have the band on for 6-8 weeks. It will be over for us soon enough

and it was the best decision we could have ever made. Sure her head

could have rounded out in time, but why chance it, in my opinion. Do

it now and don't worry about it later. You'll be glad you did.

I'll climb off my soap box now. I'm just very happy with my decision.

Christy & Isabella 6mo old in Dallas

>

> >

> > DJ and I are scheduled for the casting Thursday in Houston at CT.

> > We'll take the six-hour drive from New Orleans tomorrow evening.

> Today

> > when we visited DJ's regular pede for his 6-month shots, she made

a

> > comment about the helmet really not being necessary and actually

> > uncomfortable for the baby. She's been saying all along that DJ's

> head

> > will round out on its own. All the doc we've seen (2

neurosurgeons,

> 2

> > pedes and 1 cranial facial specialist), have pretty much said

that

> the

> > helmet is " optional " . Why is that I am so afraid NOT to get the

> helmet

> > despite doctors' opinions? I'm afraid of missing the window of

> > opportunity. On the other hand, I am still doubting myself and

> > wondering if this is really the right decision. DJ's

plagio/brachy

> was

> > diagnosed as moderate to severe. Have any of you been through

> similar

> > feelings? I guess I'm just looking for moral support:)

> >

>

[Guest guest]

Christy,

Thanks for your words if support. DJ, Jim, and I are headed out to

Houston Sunday, as DJ has a Monday AM appointment at CT. We're

looking forward to getting on with this!

> > >

> > > DJ and I are scheduled for the casting Thursday in Houston at

CT.

> > > We'll take the six-hour drive from New Orleans tomorrow

evening.

> > Today

> > > when we visited DJ's regular pede for his 6-month shots, she

made

> a

> > > comment about the helmet really not being necessary and

actually

> > > uncomfortable for the baby. She's been saying all along that

DJ's

> > head

> > > will round out on its own. All the doc we've seen (2

> neurosurgeons,

> > 2

> > > pedes and 1 cranial facial specialist), have pretty much said

> that

> > the

> > > helmet is " optional " . Why is that I am so afraid NOT to get

the

> > helmet

> > > despite doctors' opinions? I'm afraid of missing the window of

> > > opportunity. On the other hand, I am still doubting myself and

> > > wondering if this is really the right decision. DJ's

> plagio/brachy

> > was

> > > diagnosed as moderate to severe. Have any of you been through

> > similar

> > > feelings? I guess I'm just looking for moral support:)

> > >

> >

>