Re: saw the pediatrician

[Guest guest]

I have been told by two pediatricians and the crani clinic people that my

baby's head will " round out " . It has been four months and he is now nine

months old and it looks exactly like it did when they made their predictions.

I'm not waiting until it's too late. We are getting help from the DOC band

people in April.

I would be interested in knowing how many of these mild and moderate children

who were turned away from helmeting actually did. Where their parents

satisfied with the " natural results " ?

Judy

[Guest guest]

's Mom:

I do not know your specific situation, nor am I your doctor, but as

you have read from countless people on this site alone, doctors have been

wrong.

I'm glad to hear that you are seeking a second opinion.

I was sorry to hear that your doctor so firmly stated that there would

be no side effects from the plagio. I think it is wrong for him/her

to make such a solid statement on something that is so new that many doctors

have not even HEARD of this condition. Although I don't think there

has been any concrete solid proof that plagio. causes long term problems

with site, speech, etc. (as many of us here have discussed in the past)

I myself am not taking any chances. There have been studies done

that suggest several long term problems.

Also, if you check the cranial tech. site and click on their info.

link, check their "on-line brochure". There is a picture in there

that shows a 3-D CT scan of a 7(?)month old baby with plagio. Next

to it is another 3-D picture of the same baby at 19 months (no band/helmet

was used). You can see that there is absolutely NO change in this

child's head shape.

I understand that all situations are different and you did mention

that your son's case is mild, so please don't feel as though I'm trying

to make you feel guilty. All I am saying is to please be sure.

If your doctor's all agree that treatment is not necessary, then maybe

they are right. Just remember that you know your baby best, so if

you are comfortable with their decision, then it's probably the right one.

Good luck. I know it's so much to think about. I think

most of us have had many sleepless nights thinking about it.

Kendra

bthornton@... wrote:

From: bthornton@...

We saw a pediatrician in Vancouver. He said that is

mild. He

is symmetrical in the lining up of his facial features and his

ears

when you look at him face on. He said he has seen worse cases.

HE

only knows of two children that have been "banded" and compared

banding to fixing children's feet with bars back a few years ago.

Back then it was common to see children with bars to correct their

feet but now we rarely see it because they found out that they

were

intervening on something that would correct naturally. I also read

a

study on natural correction versus orthotics and the results were

very comparable. I feel like I'm between a rock and a hard

place. I

don't want to have to be in a head band but I want his skull

to

be corrected and am concerned about other related problems.

The ped

tells me it won't affect hearing and vision or speech. I

am seeing

another ped on Wed. and I am almost certain he will say the

same

thing. did have x-rays and we should have the results

end of

this week. Does anyone know of any children that had plagio

and did

not get a band but their heads became more symmetrical with age?

I

would be interested in any input.

Thanks,

's Mom

[Guest guest]

<< I also read a

study on natural correction versus orthotics and the results were

very comparable. >>

Where did you read this? We are trying natural correction and I can tell it

is working. Jenna's is a VERY mild case. Her ears are fine and her forehead

does not protruded. I think we caught it just in time. Her head is really

evening out. It is slightly higher on the right side, but even that is

starting to even out. Trust me when I say we have been aggressive! I do not

let her put pressure on the flat side, EVER! I have been doing this for 1

month. She now sleeps on the opposite side, and she spends a lot of time in

her walker (her feet don't touch the ground yet, but she likes to sit in it

and play with the toys). I personally believe repositioning can and will

work for children with VERY mild plagio. Now, if it is more severe, I don't

know, I know I would want the band if her ears were off or her forehead

protruded.

Karla

[Guest guest]

<< We positioned Hanna AGGRESSIVELYfor 2 months and saw NO change. & nbsp; Then

again, she was put into thesevere category.

Kendra >>

Yes Kendra, I think if it were severe, it would not be working. It has taken

a month of affessively repositioning to even start to correct a very mild

case. So, I can see that a month would do nothing for a severe case.

Karla

[Guest guest]

<< affessively >>

I am cracking up over here......I do know how to spell aggressively. I guess

my hands were on the wrong keys!

Karla

[Guest guest]

<< Thank you for your input. I'm just curious to find out how old your

daughter is. is 8 months old and I'm just concerned that we maybe

don't have the time to try natural correction. >>

Jenna will be 4 months on April 10th, so we caught it early. The doctor

mentioned it to me at her 2 month appointment, he told me to put rolls under

her right shoulder so she wouldn't make that side any flatter. Well, I

didn't think much about what he said, until I stumbled across this site a few

weeks later. That is when I started being aggressive and it has worked. So,

I started at about 2 1/2 months old and it is just now starting to round out.

I don't know about it working on older babies, seems like it would be harder

to keep them off of their favorite side because they are more mobile. Jenna

isn't even rolling over yet and she is starting to get used to sleeping on

the other side now and doesn't seem to mind it.

Karla

[Guest guest]

In a message dated 3/30/00 9:14:46 AM Pacific Standard Time,

lpaquin@... writes:

<< He said the way he can tell if something needs

correction is if he knows a child is in later years going to come in and ask

him to fix a problem >>

And please do tell, how do they correct it when the are older? Did you pose

that question to your doctor? Surgery?

Granted I don't know severe or mild your baby's plagio. is, but perhaps he

is doing you a grave disservice is his criticalness of the doc band therapy,

(and I am assuming also helmet therapy).

I wish you all the best, but please take into account the time line

associated with getting into doc or helmet therapy.

Also, does your baby have torticollis (tight neck muscle)? If yes, you

should get a referral to a physical therapist to help strengthen his weak

neck muscles. You can do the exercises at home, but under the instruction of

a dr or p/t.

If your baby's ears are in alignment & you don't notice any bossing, perhaps

your dr is correct.

Kimry

[Guest guest]

Karla-

A while ago you were looking for a referral to a Calif doctor, did you find a

neurologist you like? What does he/she say now about your baby's plagio?

Congratulations on the repositioning! We were aggressive also for 1 month,

but unfortunately for us it did not work. Just a side note, given with only

warm & sincere wishes/intentions, please check from above your baby's ear

alignments. I didn't even realize that Abby's were not aligned until I

looked at her head from above. If they are not aligned, the one thing a doc

band could do for your baby (aside from additional correction in back), is

restrict any continued growth forward (the forehead) that contributes to the

ears moving out of alignment. Best wishes! Kimry

[Guest guest]

<< A while ago you were looking for a referral to a Calif doctor, did you

find a

neurologist you like? What does he/she say now about your baby's plagio? >>

I got a list of names, but was waiting until her 4 month appointment to talk

to her pediatrician. He was the one who pointed it out to me and told me to

start repositioning her (which I didn't do for 2 more weeks because I thought

he was overly concerned, thank goodness I found this site and realized how

serious it could be). I have checked her so many times from above and her

ears are fine, so is her forehead. I think with Jenna, it pushed her head up

on the right side, instead of out. Does that make sense? This is why I

always say the right side is higher when looking at her straight on. Well,

the sides are lining up now. I will see her pediatrician on April 10th

and see what he thinks, but I am feeling good about it. Thanks for asking!

I'll keep you all posted, she is just starting to get to the age where she

wiggles out of my contraptions, so I am glad we had 1 month to keep her how

we wanted her!

Karla

[Guest guest]

This is what my pediatrician said about the leg braces. You don't

happen to be in Colorado do you? I went to the neurosurgeon last

week and he said he had a moderate case and you could not tell any

asymmetry from the front. He said IT IS NOT A

PROBLEM. He said the DOC people are really strong marketers and

are getting a lot people worked up for nothing. He said his head

will correct some and the little bit of remaining imperfection will

be minimized because his face will grow into his head. He said the

way he can tell if something needs correction is if he knows a child is

in later years going to come in and ask him to fix a problem. He

said our son is not even going to know anything is wrong unless we point

it out to him and create a problem. He said to QUIT

WORRYING. He spent 25 minutes with us trying to ease my

worries. Through my research I have found he is one of the best and most

respected neurosurgeons in Colorado.

I know this is counter information to this group but these are hard

decisions and it is very hard to get the emotion out of them. My

husband said " aren't you glad we don't have to put our baby in the

vice? " . My son is 5 months old. Dad is not worried but I

still am having trouble letting this go.

At 04:47 AM 3/30/00 +0000, you wrote:

>From: bthornton@...

>

>We saw a pediatrician in Vancouver. He said that is

mild. He

>is symmetrical in the lining up of his facial features and his

ears

>when you look at him face on. He said he has seen worse

cases. HE

>only knows of two children that have been " banded " and

compared

>banding to fixing children's feet with bars back a few years ago.

>Back then it was common to see children with bars to correct

their

>feet but now we rarely see it because they found out that they

were

>intervening on something that would correct naturally. I also read

a

>study on natural correction versus orthotics and the results

were

>very comparable. I feel like I'm between a rock and a hard

place. I

>don't want to have to be in a head band but I want his skull

to

>be corrected and am concerned about other related problems. The

ped

>tells me it won't affect hearing and vision or speech. I am

seeing

>another ped on Wed. and I am almost certain he will say the

same

>thing. did have x-rays and we should have the results end

of

>this week. Does anyone know of any children that had plagio and

did

>not get a band but their heads became more symmetrical with

age? I

>would be interested in any input.

>

>Thanks,

>'s Mom

>

>

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[Guest guest]

Karla,

I'm so glad Jenna's doing so well. We positioned Hanna AGGRESSIVELY

for 2 months and saw NO change. Then again, she was put into the

severe category.

Kendra

karladianne67@... wrote:

<< I also read a

study on natural correction versus orthotics and the results were

very comparable. >>

Where did you read this? We are trying natural correction

and I can tell it

is working. Jenna's is a VERY mild case. Her ears are

fine and her forehead

does not protruded. I think we caught it just in time.

Her head is really

evening out. It is slightly higher on the right side, but

even that is

starting to even out. Trust me when I say we have been aggressive!

I do not

let her put pressure on the flat side, EVER! I have been

doing this for 1

month. She now sleeps on the opposite side, and she spends

a lot of time in

her walker (her feet don't touch the ground yet, but she likes

to sit in it

and play with the toys). I personally believe repositioning

can and will

work for children with VERY mild plagio. Now, if it is more

severe, I don't

know, I know I would want the band if her ears were off or her

forehead

protruded.

Karla

[Guest guest]

----- Original Message -----

From: <karladianne67@...>

<Plagiocephalyonelist>

Sent: Thursday, March 30, 2000 8:10 AM

Subject: Re: saw the pediatrician

> << I also read a

> study on natural correction versus orthotics and the results were

> very comparable. >>

> Where did you read this? We are trying natural correction and I can tell

it

> is working. Jenna's is a VERY mild case. Her ears are fine and her

forehead

> does not protruded. I think we caught it just in time. Her head is

really

> evening out. It is slightly higher on the right side, but even that is

> starting to even out. Trust me when I say we have been aggressive! I do

not

> let her put pressure on the flat side, EVER! I have been doing this for 1

> month. She now sleeps on the opposite side, and she spends a lot of time

in

> her walker (her feet don't touch the ground yet, but she likes to sit in

it

> and play with the toys). I personally believe repositioning can and will

> work for children with VERY mild plagio. Now, if it is more severe, I

don't

> know, I know I would want the band if her ears were off or her forehead

> protruded.

> Karla

>

> ------------------------------------------------------------------------

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[Guest guest]

My son's case is mild, too, but once the sutures are closed it is too late to

do anything about it. I refuse to take this chance.

My husband is not the perfectionist that I am. He would probably choose to

let it go, too.

I want my little boy to have what he was born with.

I don't want to put him in a " vice " either, but I don't know of any other way

to fix it. I did months and months of positioning. He is nine months now.

He is going to Cranial Tech next week. I found them on the Internet -- they

did not find me.

Judy

[Guest guest]

It is hard to let go of the emotions involved. It seems when we get

information that is contrary to what we have heard or think we know,

we start second guessing ourselves (I know I did). Bottom line is

parents have to feel where they stand, and if they still don't feel

quite right with the diagnosis, to at least get a second opinion to

see if the same, or a similar diagnosis is said. And that goes for

all sorts of conditions.

Personally, I don't feel that Cranial Technologies would fit a child

for a band that didn't need it. It certainly would skew any research

they were doing, as well as make it difficult to continue to produce

the product if complaints were made that they banded children

unnecessarily. And having read about Drs/neurosurgeons who have

performed operations unnecessarily (because they assumed closed

sutures, rather than did CT scans to check before the surgery), that

kind of concerns me a bit more.

Our own neurosurgeon in Ohio actually heard of the DOC band, and a

few patients of his had worn it -- but he had no knowledge that

Cranial Technologies works with other headshapes besides assymetrical

plagiocephaly, (my son has a scaphocephalic shape) and I'm still not

sure the Dr. really believed me, even though I told him more than

once that they had three different bands. We quibbled over what to

call the " shape " of the head -- because Quinn has a " ledge " (his head

juts out past his neck in the back)he called it dolicocephalic, and

that's what he made the script out for. That got me worried that

maybe I had been wrong all along. I went through my messages where I

describe the shape, and someone else told me what it was called, I

looked back to some of the pictures of scaphocephalic skulls I

downloaded off the net that were similar, and did all

this " rechecking " of myself. I had sent pictures to Cranial Tech

last week to make sure that this was an option, and it was a day

after our appointment that I was told that the Band was definitely an

option for us. It wasn't until then that I stopped second guessing

myself, even though I already had the prescription.

We're to take Quinn in to the Neurosurgeon around 7 weeks after he's

been wearing the band. Only then will the Dr. know that there are

more options out there besides surgery.

We have to be proactive. It's hard not to have a little emotion tied

to this -- but the more knowledge parents have when they go to the

doctors (about any condition), the more questions that they can ask,

and the more likely Drs. will at least try to talk through concerns

with parents.

(aka Kali)

[Guest guest]

Good on yer!!

I hope it works out well for you.

I'm all for proactive measures now, after sitting on our behinds for too long

, believing what the 'professionals' told us about it correcting itself in

time.

We too are nervous about the thought of our sons head being in a restrictive

device (I can't bring myself to call it a 'vice'), but it sure is better

than having the shape get worse and worse.

He will be fitted with it on 24th Apr and we only wish it could be tomorrow,

despite all the trials and tribulations we feel sure will come with the

headband!

Good luck, we wish you all the very best.

, and (of Dallas)

[Guest guest]

about the spouse thing...it took my hubby a while to " catch up " . Major

denial! Consider another dr, perhaps you will get a different opinion. Kimry

[Guest guest]

<A HREF= " http://www.cranialtech.com/clinic/co.html " >Clinic Locations -

Cranial Technologies</A>

consider this specialist...I'd like to think that if you don't need the band,

a seasoned specialist that makes Cranial Technologies site list would not

recommended/rx it. Perhaps hearing it from someone with first hand patient

experience would make you feel better, even if they said you don't need a

band/helmet. Just a thought...Kimry

[Guest guest]

I am flying to Phoenix from Northern California. I just don't want to take a

chance with my son's head.

We only get one chance at this one and he is already nine months old.

I suggest you call Cranial Tech. If you want to pursue it further, you could

probably ask them to refer you to a neurologist. Just a suggestion.

Judy

[Guest guest]

, My son is 6mos old been in helmet and PT since Jan. We were also

told not to worry. We were given the choice of treating or not. Dr said it

was purely cosmetic. The more we paid closer attention to his features did we

notice he did need some correction, such as his ears. Being that he also has

torticollis we did not think this would self-correct. Belinda (indiana)

[Guest guest]

No, , you're not!!! My husband was very concerned about all of this at

first. Since starting treatment, everything has been my responsibility!!!!

Those moms who have help from dad are very fortunate. I on the other hand am

not. Belinda(Indiana)

[Guest guest]

Thanks -

It's just that when I was little I used to put those plastic bands on my head

and they always gave me a headache. Never could wear them. I'm afraid baby

will have a headache and I won't know it.

He is a tough little guy though. He bumps his head on toys and toy buckets

and never cries. So maybe I just have a very encompassing imagination.

Judy

[Guest guest]

I know, I was wondering where you were:)!! Kimry

[Guest guest]

I too am going to watch my son over the next several months. I am not

necessarily supporting the Neurosurgeans position but I think it is good to

get all opinions out in the open. For us getting the band will mean

flying to Phoenix from Denver every 2 weeks for months. The doctor said he

is not so against the bands that he will not write an Rx. He did say that

he will not say it is medically necessary.

I still am very sick inside about the whole thing. It is hard when

everyone (Ped, Neuro and spouse) are against you.

At 06:27 PM 3/30/00 -0500, you wrote:

>My son's case is mild, too, but once the sutures are closed it is too late to

>do anything about it. I refuse to take this chance.

>

>My husband is not the perfectionist that I am. He would probably choose to

>let it go, too.

>

>I want my little boy to have what he was born with.

>

>I don't want to put him in a " vice " either, but I don't know of any other way

>to fix it. I did months and months of positioning. He is nine months now.

>He is going to Cranial Tech next week. I found them on the Internet -- they

>did not find me.

>

>Judy

>

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[Guest guest]

Well said, !

C./subscribe/Plagiocephaly

----- Original Message -----

From: Horstmann

Plagiocephalyonelist

Sent: Thursday, March 30, 2000 1:39 PM

Subject: Re: saw the pediatrician

It is hard to let go of the emotions involved. It seems when we get information that is contrary to what we have heard or think we know, we start second guessing ourselves (I know I did). Bottom line is parents have to feel where they stand, and if they still don't feel quite right with the diagnosis, to at least get a second opinion to see if the same, or a similar diagnosis is said. And that goes for all sorts of conditions.Personally, I don't feel that Cranial Technologies would fit a child for a band that didn't need it. It certainly would skew any research they were doing, as well as make it difficult to continue to produce the product if complaints were made that they banded children unnecessarily. And having read about Drs/neurosurgeons who have performed operations unnecessarily (because they assumed closed sutures, rather than did CT scans to check before the surgery), that kind of concerns me a bit more. Our own neurosurgeon in Ohio actually heard of the DOC band, and a few patients of his had worn it -- but he had no knowledge that Cranial Technologies works with other headshapes besides assymetrical plagiocephaly, (my son has a scaphocephalic shape) and I'm still not sure the Dr. really believed me, even though I told him more than once that they had three different bands. We quibbled over what to call the "shape" of the head -- because Quinn has a "ledge" (his head juts out past his neck in the back)he called it dolicocephalic, and that's what he made the script out for. That got me worried that maybe I had been wrong all along. I went through my messages where I describe the shape, and someone else told me what it was called, I looked back to some of the pictures of scaphocephalic skulls I downloaded off the net that were similar, and did all this "rechecking" of myself. I had sent pictures to Cranial Tech last week to make sure that this was an option, and it was a day after our appointment that I was told that the Band was definitely an option for us. It wasn't until then that I stopped second guessing myself, even though I already had the prescription.We're to take Quinn in to the Neurosurgeon around 7 weeks after he's been wearing the band. Only then will the Dr. know that there are more options out there besides surgery. We have to be proactive. It's hard not to have a little emotion tied to this -- but the more knowledge parents have when they go to the doctors (about any condition), the more questions that they can ask, and the more likely Drs. will at least try to talk through concerns with parents.(aka Kali)

[Guest guest]

Hey -

Is there any way you could get an opinion/evaluation from someone

local who provides helmet therapy on kids? A local OT at the

hospital or something? Since they work more closely with these kind

of cases, I think you might be more comfortable with their opinion.

Just because you received the opinion of someone who only works with

helmets doesn't mean you would be obligated to use one. Or, you may

feel so comfortable with that person you decide to go that

direction.

Don't tear yourself up wondering if you're doing the right thing by

waiting. There is nothing in the world wrong with asking questions

and opinions. Don't feel you are looking for something to be wrong

with your boy. You're just making sure. And that's commendable!

C.

-- In Plagiocephalyonelist, Paquin <lpaquin@q...> wrote:

> I too am going to watch my son over the next several months. I am

not

> necessarily supporting the Neurosurgeans position but I think it is

good to

> get all opinions out in the open. For us getting the band will

mean

> flying to Phoenix from Denver every 2 weeks for months. The doctor

said he

> is not so against the bands that he will not write an Rx. He did

say that

> he will not say it is medically necessary.

>

> I still am very sick inside about the whole thing. It is hard when

> everyone (Ped, Neuro and spouse) are against you.

>

>

>

> At 06:27 PM 3/30/00 -0500, you wrote:

> >My son's case is mild, too, but once the sutures are closed it is

too late to

> >do anything about it. I refuse to take this chance.

> >

> >My husband is not the perfectionist that I am. He would probably

choose to

> >let it go, too.

> >

> >I want my little boy to have what he was born with.

> >

> >I don't want to put him in a " vice " either, but I don't know of

any other way

> >to fix it. I did months and months of positioning. He is nine

months now.

> >He is going to Cranial Tech next week. I found them on the

Internet -- they

> >did not find me.

> >

> >Judy

> >

> >-------------------------------------------------------------------

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> >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

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> >

> >

> >

> >