Re: Our appt. didn't go so well.......

[Guest guest]

Trish,

I would trust your instincts with Carson, some docs just don't

believe in banding. My cousin is a ped (not ours though), and when

I noticed 's flatness, I asked him about it. He gave me the

round out on it's own speech, and said to try to keep her off the

flatness if I can... I asked 's ped, and he had just been to

a seminar where Cranial Tech was represented, and told me to go

there for a free consult ( was the first banded baby in their

practice of 6 peds). I'm so glad I followed my gut that her head

shape just wasn't right. Keep on top of it. Maybe call Toronto

Sick Kids for the name of a doctor you can get a referral from, and

ask your ped to write the scrip to go see them... Good luck!

Kerri from NY

's mom (DOCgrad)

> Hello,

>

> Well, Carson had his appointment with the ped. on the 17th, and to

> be quite honest, I'm not happy at all. She didn't even really look

> at his head which is why I thought we were there!(he has a jitter

in

> his left arm that she was testing and concentrated on that the

WHOLE

> time. I didn't even know that we were there for that! My family

dr.

> said that he was fine, but I guess better safe than sorry........)

>

> Anyway, she told us that lots of babies are coming in with flat

> heads because of he back to sleep program. She said he doesn't

have

> tort (whick I knew already) and therefore he's fine! She said it

> will round out and if it doesn't his hair will cover it! She also

> said there is no medical side effects of having a flat head and

that

> it is purely cosmetic if we opt to treat and if we opt for

treatment

> we have to see someone else (at least she was nice about that,

> offering to refer us) but that we would have to go to CALGARY

which

> is BULL!!(I'm in Barrie, Ontario, just North of Toronto where Sick

> Kids is and I know we can go there! A g/f of mines dd had cranio

and

> was operated on there, so she's full of it lol!)

>

> I was so pissed off that she didn't even feel his head, didn't

want

> to see any pictures we brought (when we first arrived I told her

> that I had brought some pics and she said, oh thats nice, really

> snotty) and wasn't really open to me giving her any information

> about him, she pretty much cut me off! I was trying to tell her

that

> Carson slept in his carseat for the first 2 months of his life (i

> know thats bad, but my older son slept in it for 4 months and his

> head is round! lol) then my family dr. noticed the flatness so we

> moved him to his crib wher he slpet on his SIDE (rotating of

course)

> for the next few months until he started to roll over in his crib.

> It wasnt till he started to roll over which was about 1 .5 months

> ago that he started to lay on his back to sleep!

>

> I told her all this and it's like it went in once ear and out the

> other!! She did say when she sees him again in February about his

> arm that she might look at his head again to see if it's changed

> then she may do some tests. I dont want to wait any longer, he

> almost 7 months old and if she would have looks at the pics I

> brought she would see the progression!! I have been repoing him

> since he was 2 months old and it's still flat!

>

> I called my family doctor right away to get a second opinion (he's

> nice so I'm sure he'll agree) but he is on Holidays, so I will

have

> to wait until the new year.

>

> I've been trying to collect as much info as I can to bring to my

> family dr. just in case, but many of the files here i cant open

> (something wrong with my computer i guess) Could someone please e-

> mail me with anything you might think is helpful? My e-mail is

> rickandtrish2003@y...

>

> Sorry this was so long! Thank you so much if you've read this far

> lol!

>

>

>

> Trish, Barrie, ON

> with Carson almost 7 months!

[Guest guest]

Hi Group

We are new here and havent posted yet but Ive really kept myself

busy reading all your posts

Anyway my son Dylan, 6 months old, has flatness on his left side.

When he went in for his 4 month appt dr noticed his head shape a bit

off- so she rec. us to see a specialist. Well it took 2 months to

see this specialist and in the meantime we just layed him on his

right side and saw a physical therapist, who started the clinic with

the specialist and then went solo. Well I was more confused about

what to do after seeing the specialist. His head was 8mm off- didnt

even explain what that meant, only that he was in the grey area for

reccomending the helmut- anything over 10 they highly rec. Then I

got a bunch of stats regarding babies head shape ratios which to

confused me. So for those of you who went forward were your children

uncomfortable with the helmut? DYlan is not a great sleeper, hes a

high demand child, and im so afraid its going to make all these

things worse and make him so uncomfortable. He facial features are

not affected in anyway only the back left side of his head- also he

has a wide head so the dr's said it would only help 5% at this point-

Is it all really worth it? Ive asked friends for opinions, family

and so forth but you all are so much more knowledgable so Id love to

hear experiences, advice etc. On a final note what nags me most is

that I dont want to regret not doing it if it is something that will

haunt him (being teased and so forth) and I really want to do whats

best for him- but I dont know what that is

thanks guys

& Dylan

-- In Plagiocephaly , " rickandtrish2003 "

<rickandtrish2003@y...> wrote:

> Hello,

>

> Well, Carson had his appointment with the ped. on the 17th, and to

> be quite honest, I'm not happy at all. She didn't even really look

> at his head which is why I thought we were there!(he has a jitter

in

> his left arm that she was testing and concentrated on that the

WHOLE

> time. I didn't even know that we were there for that! My family

dr.

> said that he was fine, but I guess better safe than sorry........)

>

> Anyway, she told us that lots of babies are coming in with flat

> heads because of he back to sleep program. She said he doesn't

have

> tort (whick I knew already) and therefore he's fine! She said it

> will round out and if it doesn't his hair will cover it! She also

> said there is no medical side effects of having a flat head and

that

> it is purely cosmetic if we opt to treat and if we opt for

treatment

> we have to see someone else (at least she was nice about that,

> offering to refer us) but that we would have to go to CALGARY

which

> is BULL!!(I'm in Barrie, Ontario, just North of Toronto where Sick

> Kids is and I know we can go there! A g/f of mines dd had cranio

and

> was operated on there, so she's full of it lol!)

>

> I was so pissed off that she didn't even feel his head, didn't

want

> to see any pictures we brought (when we first arrived I told her

> that I had brought some pics and she said, oh thats nice, really

> snotty) and wasn't really open to me giving her any information

> about him, she pretty much cut me off! I was trying to tell her

that

> Carson slept in his carseat for the first 2 months of his life (i

> know thats bad, but my older son slept in it for 4 months and his

> head is round! lol) then my family dr. noticed the flatness so we

> moved him to his crib wher he slpet on his SIDE (rotating of

course)

> for the next few months until he started to roll over in his crib.

> It wasnt till he started to roll over which was about 1 .5 months

> ago that he started to lay on his back to sleep!

>

> I told her all this and it's like it went in once ear and out the

> other!! She did say when she sees him again in February about his

> arm that she might look at his head again to see if it's changed

> then she may do some tests. I dont want to wait any longer, he

> almost 7 months old and if she would have looks at the pics I

> brought she would see the progression!! I have been repoing him

> since he was 2 months old and it's still flat!

>

> I called my family doctor right away to get a second opinion (he's

> nice so I'm sure he'll agree) but he is on Holidays, so I will

have

> to wait until the new year.

>

> I've been trying to collect as much info as I can to bring to my

> family dr. just in case, but many of the files here i cant open

> (something wrong with my computer i guess) Could someone please e-

> mail me with anything you might think is helpful? My e-mail is

> rickandtrish2003@y...

>

> Sorry this was so long! Thank you so much if you've read this far

> lol!

>

>

>

> Trish, Barrie, ON

> with Carson almost 7 months!

[Guest guest]

--Hi and welcome to the group. My daughter was diagnosed at 6

months. It took almost 3 months to get into the specialist. We

didn't get exact mm off but she was diagnose with moderate to severe

plagio. At first i said no way would i put a band on her. The more

i thought about it the more it nagged at me. I asked myself if i

would ever look back and wonder what if i would have banded her.

For our family we knew we would always wonder about the correction

she may have received. For US the decision was to band. I decided

any correction she received would be an improvement. At 9 months

she received her STARband. She wore it for 12 weeks and received

approxiamately 80% correction. We are so happy with her

correction. I am the only one who notices her slight remaining

flatness.- It was totally worth it in my opinion.

Banding is a personal decision. I can say Jenna did not mind her

band from the time they put it on her head. it didn't affect her

play,sleep or personality.

Thanks for introducing yourself and please keep us updated on your

decision.

Angie and Jenna(STAR grad 1/21/03)

Plagiocephaly , " jsomkin " <mjdtatum@m...> wrote:

> Hi Group

> We are new here and havent posted yet but Ive really kept myself

> busy reading all your posts

> Anyway my son Dylan, 6 months old, has flatness on his left side.

> When he went in for his 4 month appt dr noticed his head shape a

bit

> off- so she rec. us to see a specialist. Well it took 2 months to

> see this specialist and in the meantime we just layed him on his

> right side and saw a physical therapist, who started the clinic

with

> the specialist and then went solo. Well I was more confused about

> what to do after seeing the specialist. His head was 8mm off-

didnt

> even explain what that meant, only that he was in the grey area

for

> reccomending the helmut- anything over 10 they highly rec. Then I

> got a bunch of stats regarding babies head shape ratios which to

> confused me. So for those of you who went forward were your

children

> uncomfortable with the helmut? DYlan is not a great sleeper, hes a

> high demand child, and im so afraid its going to make all these

> things worse and make him so uncomfortable. He facial features are

> not affected in anyway only the back left side of his head- also

he

> has a wide head so the dr's said it would only help 5% at this

point-

> Is it all really worth it? Ive asked friends for opinions, family

> and so forth but you all are so much more knowledgable so Id love

to

> hear experiences, advice etc. On a final note what nags me most is

> that I dont want to regret not doing it if it is something that

will

> haunt him (being teased and so forth) and I really want to do

whats

> best for him- but I dont know what that is

> thanks guys

> & Dylan

>

>

>

>

>

>

> -- In Plagiocephaly , " rickandtrish2003 "

> <rickandtrish2003@y...> wrote:

> > Hello,

> >

> > Well, Carson had his appointment with the ped. on the 17th, and

to

> > be quite honest, I'm not happy at all. She didn't even really

look

> > at his head which is why I thought we were there!(he has a

jitter

> in

> > his left arm that she was testing and concentrated on that the

> WHOLE

> > time. I didn't even know that we were there for that! My family

> dr.

> > said that he was fine, but I guess better safe than

sorry........)

> >

> > Anyway, she told us that lots of babies are coming in with flat

> > heads because of he back to sleep program. She said he doesn't

> have

> > tort (whick I knew already) and therefore he's fine! She said it

> > will round out and if it doesn't his hair will cover it! She

also

> > said there is no medical side effects of having a flat head and

> that

> > it is purely cosmetic if we opt to treat and if we opt for

> treatment

> > we have to see someone else (at least she was nice about that,

> > offering to refer us) but that we would have to go to CALGARY

> which

> > is BULL!!(I'm in Barrie, Ontario, just North of Toronto where

Sick

> > Kids is and I know we can go there! A g/f of mines dd had cranio

> and

> > was operated on there, so she's full of it lol!)

> >

> > I was so pissed off that she didn't even feel his head, didn't

> want

> > to see any pictures we brought (when we first arrived I told her

> > that I had brought some pics and she said, oh thats nice, really

> > snotty) and wasn't really open to me giving her any information

> > about him, she pretty much cut me off! I was trying to tell her

> that

> > Carson slept in his carseat for the first 2 months of his life

(i

> > know thats bad, but my older son slept in it for 4 months and

his

> > head is round! lol) then my family dr. noticed the flatness so

we

> > moved him to his crib wher he slpet on his SIDE (rotating of

> course)

> > for the next few months until he started to roll over in his

crib.

> > It wasnt till he started to roll over which was about 1 .5

months

> > ago that he started to lay on his back to sleep!

> >

> > I told her all this and it's like it went in once ear and out

the

> > other!! She did say when she sees him again in February about

his

> > arm that she might look at his head again to see if it's changed

> > then she may do some tests. I dont want to wait any longer, he

> > almost 7 months old and if she would have looks at the pics I

> > brought she would see the progression!! I have been repoing him

> > since he was 2 months old and it's still flat!

> >

> > I called my family doctor right away to get a second opinion

(he's

> > nice so I'm sure he'll agree) but he is on Holidays, so I will

> have

> > to wait until the new year.

> >

> > I've been trying to collect as much info as I can to bring to my

> > family dr. just in case, but many of the files here i cant open

> > (something wrong with my computer i guess) Could someone please

e-

> > mail me with anything you might think is helpful? My e-mail is

> > rickandtrish2003@y...

> >

> > Sorry this was so long! Thank you so much if you've read this

far

> > lol!

> >

> >

> >

> > Trish, Barrie, ON

> > with Carson almost 7 months!

[Guest guest]

Trish,

Here are the links I would recommend to address the opinion

expressed by your pediatrician. All of these links are also

available in the links section of the group. A couple of notes:

some of these may be pdf files, which you may not be able to open,

and also some of the studies referenced might be an abstract

(summary) of the study performed. Since they are at a medical

database, I don't see why you couldn't just print out the abstract

page and tell your pediatrician to look it up herself (some

abstracts have buttons for viewing the whole study, others must be

purchased.) If the link listed is two lines long, you may not be

directed correctly. If that is the case, then copy and paste the

both lines of the link to your address bar.

Good luck. The links follow.

Christie (Mom to Repo'd Remy)

Studies showing that plagiocephaly is more than just " cosmetic: "

Auditory ERPs Reveal Brain Dysfunction in Infants with Plagiocephaly

(pub. Jul. 2002)

In the current study we demonstrated, for the first time, that the

central sound processing, as reflected by ERPs, is affected in

children with plagiocephaly.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=12140415 & dopt=Abstract

Neurodevelopment in Children with Single-Suture Craniosynostosis and

Plagiocephaly without Synostosis (pub. Nov. 2001)

The objective of this study was to determine whether children with

nonsyndromic craniosynostosis and plagiocephaly without synostosis

demonstrated cognitive and psychomotor delays when compared with a

standardized population sample. 0 percent of the subjects in the

group with plagiocephaly without synostosis were accelerated, 67

percent were normal, 20 percent had mild delay, and 13 percent had

significant delay.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=11711916 & dopt=Abstract

Ophthalmologic Findings in Patients with Nonsyndromic Plagiocephaly

(pub. July 2003)

The purpose of this article was to study the prevalence of

strabismus and astigmatism in children with nonsyndromic

plagiocephaly. Children with deformational plagiocephaly do have an

increased prevalence of astigmatism.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=12867869 & dopt=Abstract

U of Washington, Seattle Developmental Study

an abstract linking plagiocephaly w/ grade school probs

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

db=PubMed & cmd=Retrieve & list_uids=10654986 & dopt=Abstract

AMA(American Medical Association) - Committee A Resolution 119 I-97

" Cosmetic surgery (treatment) is performed to reshape normal

structures of the body in order to improve the patient's appearance

and self-esteem. " Whereas Reconstructive surgeries (treatments) can

be " performed on abnormal structures to restore them to a more

normal state. "

http://www.cappskids.org/res119.pdf

(COSMETIC VS. RECONSTRUCTIVE)

FDA Approval Database for Helmets/Bands

Is your helmet or band FDA approved? Check this database to find

out. Just enter " MVA " in the Product Code field of the search

template, and press your Enter key to see a list of all FDA approved

helmets and bands.

http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfPMN/pmn.cfm

(HELMETS AND BANDS ARE FDA APPROVED)

The AAP recommends referral to neurosurgeon for other (i.e.

helmets/bands) when a trial of 2-3 months of repositioning doesn't

improve headshape:

AAP Plagio Article

Prevention & Management of Positional Skull Deformities in Infants -

AAP finally acknowledges relationship of " back to sleep " in increase

in plagio!

http://www.aap.org/policy/s0201.html

(THE AAP CONSIDERS HELMETS/BANDS VIABLE TREATMENT FOR PLAGIOCEPHALY)

Demonstrates that helmets/bands DO work:

Treatment of Craniofacial Asymmetry with Dynamic Orthotic

Cranioplasty

Eight-year investigation that demonstrated the effectiveness of the

DOC Band® for treatment of positional plagiocephaly.

http://www.cranialtech.com/ParentsArea/publications/jcfsjan98.pdf

Treatment of the " older " infant with plagiocephaly

This study documents that even though early intervention is best,

treatment can still be successful even if the child is older than 12

months of age.

http://www.neurosurgery.org/focus/sep00/9-3-5.pdf

Deformational Posterior Plagiocephaly: Diagnosis and Treatment (pub.

Nov. 2002)

This study was designed to evaluate the effectiveness of helmet

therapy (DOC band) in the correction of patients with moderate to

severe posterior deformational plagiocephaly. The study recorded a

41.56% (p < .001) reduction in cranial vault asymmetry and a 40.23%

(p <.001) reduction in cranial base asymmetry. Orbitotragial

asymmetry was improved 18.72% (p = .0738).

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=12401104 & dopt=Abstract

Studies tackling the " round out on its own " premise:

Importance of Early Recognition and Treatment of Deformational

Plagiocephaly

This study emphasizes the importance of early recognition and

treatment in order to achieve the best possible outcome.

http://www.cranialtech.com/ParentsArea/publications/cpcjmarch99.pdf

Study: Posterior Plagiocephaly: Proactive Conservative Management

(pub. Jan. 1999)

We reviewed 39 cases of posterior plagiocephaly, 37 of which were

treated conservatively. Of these, 34 patients had a significant

improvement over the following year with sleep posture modification

and/or physiotherapy. While only eight cases returned to complete

normality, the remainder had deformities that were deemed mild by

both mothers and surgeons, and did not merit surgery.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=10343585 & dopt=Abstract

(ONLY 8 RETURNED TO COMPLETE NORMALITY IN THIS STUDY, AND THESE WERE

BABIES BEING REPOSITIONED!)

Study: Nonsurgical, Nonorthotic Treatment of Occipital Plagiocephaly

(pub. Feb 1997)

Good article that compares corrective devices with positional

therapy. The results obtained in Phase 1 of this study strongly

indicate that repositioning neonates with occipital plagiocephaly

may produce improvement in cranial vault asymmetry very similar to

that reported with external orthotic treatment. Continued vigilance

is necessary to identify the patients who may not improve with

repositioning and stretching exercises; rather, these patients may

benefit from orthotic treatment.

http://www.neurosurgery.org/journals/online_j/feb97/2-2-3.html

(RECOMMENDS VIGILENCE IN ID'ING PATIENTS WHO DO NOT IMPROVE FROM

REPO, AND SHOULD BE USING A HELMET/BAND INSTEAD!)

Study: Helmet versus Nonhelmet Treatment in Nonsynostotic Positional

Posterior Plagiocephaly (pub. Nov. 2000)

Improvement was significantly better and faster in the helmet group

compared with nonhelmet treatment.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=11314498 & dopt=Abstract

(HELMET TREATMENT PRODUCED MUCH FASTER AND BETTER RESULTS THAN NON-

HELMET)

> Hello,

>

> Well, Carson had his appointment with the ped. on the 17th, and to

> be quite honest, I'm not happy at all. She didn't even really look

> at his head which is why I thought we were there!(he has a jitter

in

> his left arm that she was testing and concentrated on that the

WHOLE

> time. I didn't even know that we were there for that! My family

dr.

> said that he was fine, but I guess better safe than sorry........)

>

> Anyway, she told us that lots of babies are coming in with flat

> heads because of he back to sleep program. She said he doesn't

have

> tort (whick I knew already) and therefore he's fine! She said it

> will round out and if it doesn't his hair will cover it! She also

> said there is no medical side effects of having a flat head and

that

> it is purely cosmetic if we opt to treat and if we opt for

treatment

> we have to see someone else (at least she was nice about that,

> offering to refer us) but that we would have to go to CALGARY

which

> is BULL!!(I'm in Barrie, Ontario, just North of Toronto where Sick

> Kids is and I know we can go there! A g/f of mines dd had cranio

and

> was operated on there, so she's full of it lol!)

>

> I was so pissed off that she didn't even feel his head, didn't

want

> to see any pictures we brought (when we first arrived I told her

> that I had brought some pics and she said, oh thats nice, really

> snotty) and wasn't really open to me giving her any information

> about him, she pretty much cut me off! I was trying to tell her

that

> Carson slept in his carseat for the first 2 months of his life (i

> know thats bad, but my older son slept in it for 4 months and his

> head is round! lol) then my family dr. noticed the flatness so we

> moved him to his crib wher he slpet on his SIDE (rotating of

course)

> for the next few months until he started to roll over in his crib.

> It wasnt till he started to roll over which was about 1 .5 months

> ago that he started to lay on his back to sleep!

>

> I told her all this and it's like it went in once ear and out the

> other!! She did say when she sees him again in February about his

> arm that she might look at his head again to see if it's changed

> then she may do some tests. I dont want to wait any longer, he

> almost 7 months old and if she would have looks at the pics I

> brought she would see the progression!! I have been repoing him

> since he was 2 months old and it's still flat!

>

> I called my family doctor right away to get a second opinion (he's

> nice so I'm sure he'll agree) but he is on Holidays, so I will

have

> to wait until the new year.

>

> I've been trying to collect as much info as I can to bring to my

> family dr. just in case, but many of the files here i cant open

> (something wrong with my computer i guess) Could someone please e-

> mail me with anything you might think is helpful? My e-mail is

> rickandtrish2003@y...

>

> Sorry this was so long! Thank you so much if you've read this far

> lol!

>

>

>

> Trish, Barrie, ON

> with Carson almost 7 months!