what would you do?

[Guest guest]

> My son is 5 1/2 and in his last year of special ed. preschool. He

is

> considered high-functioning autistic or PDD. He communicates with

> delayed echolalia and his receptive language is incredible! He is

not

> fully potty-trained yet (goes on a schedule, and NEVER poops into

the

> potty). Over the past 3 years we have tried every supplement out

> there and he is currently a patient at Pfeiffer and has been on the

> MT Promoter since July with very little improvement. I've been

> seriously considering chelation over the past 2 weeks (Maybe you've

> noticed all my recent posts!). Anyway, his hair test shows only

> elevated levels of lead.

1. lead is seriously toxic. Especially if it is really high.

2. did you use the counting rules? mercury does not usually

show up as elevated even if the person is mercury toxic.

/files/HOW_TO_hair_test

> Do I have anything to lose by trying

> chelation (besides more $$$!)

literal answer: yes, there is always some risk in most everything.

But sometimes trying it is a good way to find out.

But do recall that lead is very toxic, so if he is high lead I

would consider DMSA to be appropriate -- not just trying it

" anyway " to see.....

You might want to buy the book Turning Lead Into Gold. About

twin boys with lead toxicity and severe autism....

/files/Books_about_autism

> Have people seen results chelating

> lead? I just want some expressive language - I want to know what's

> going on in that cute little head of his!

> Thanks for your help, on this and my previous posts!

>

> P.S. Another question - If I go with DMSA, my son can't swallow a

> pill, Is there a way to get the stuff into him?

you could try reading some of the ideas here:

/files/HOW_TO_buy_DMSA

look for the section at the end about ideas for getting kids

to take stuff. This is by no means complete or exhaustive

list, but it does have a range of ideas. Putting the DMSA

in juice or food would be a good starting point. Something

he likes.....

best wishes,

Moria

[Guest guest]

Quick question. Is your child on the GF/CF diet?

Terri

Remember the movie, Wag The Dog?

Wake up folks, we're being wagged.

Terri (2002)

[ ] What would you do?

> My son is 5 1/2 and in his last year of special ed. preschool. He is

> considered high-functioning autistic or PDD. He communicates with

> delayed echolalia and his receptive language is incredible! He is not

> fully potty-trained yet (goes on a schedule, and NEVER poops into the

> potty). Over the past 3 years we have tried every supplement out

> there and he is currently a patient at Pfeiffer and has been on the

> MT Promoter since July with very little improvement. I've been

> seriously considering chelation over the past 2 weeks (Maybe you've

> noticed all my recent posts!). Anyway, his hair test shows only

> elevated levels of lead. Do I have anything to lose by trying

> chelation (besides more $$$!) Have people seen results chelating

> lead? I just want some expressive language - I want to know what's

> going on in that cute little head of his!

> Thanks for your help, on this and my previous posts!

>

> P.S. Another question - If I go with DMSA, my son can't swallow a

> pill, Is there a way to get the stuff into him?

>

>

>

> =======================================================

>

[Guest guest]

There's a good book out there called Turning Lead Into Gold.

before my son learned to swallow pills I would mix the DMSA with lemonade and

shoot it down his throat with a medicine syringe.

katiezizi wrote:

> My son is 5 1/2 and in his last year of special ed. preschool. He is

> considered high-functioning autistic or PDD. He communicates with

> delayed echolalia and his receptive language is incredible! He is not

> fully potty-trained yet (goes on a schedule, and NEVER poops into the

> potty). Over the past 3 years we have tried every supplement out

> there and he is currently a patient at Pfeiffer and has been on the

> MT Promoter since July with very little improvement. I've been

> seriously considering chelation over the past 2 weeks (Maybe you've

> noticed all my recent posts!). Anyway, his hair test shows only

> elevated levels of lead. Do I have anything to lose by trying

> chelation (besides more $$$!) Have people seen results chelating

> lead? I just want some expressive language - I want to know what's

> going on in that cute little head of his!

> Thanks for your help, on this and my previous posts!

>

> P.S. Another question - If I go with DMSA, my son can't swallow a

> pill, Is there a way to get the stuff into him?

>

>

> =======================================================

>

[Guest guest]

Hi,

I would say you should certainly give chelation a try! Our 6-1/2 year old

son is also a patient at the Pfeiffer Treatment Center and has been for 2

years now. We started him on the MT Promoter this past May 3 and then began

chelation with DMSA and ALA (Andy's dosage and timing protocol, plus

supplement recommendations) on May 24. We have seen wonderful progress just

in the 6 months we've been chelating! This is a child who had just single

words before (and not even pronouncing all of the letters in the word), with

very poor articulation. He is now saying 6-8 word phrases, all the bad

behaviors are gone, he is having his best year of school ever, etc., etc.

His speech therapist just last week said that his progress has been

" phenomenal " . He is spending a fair amount of time in his regular 1st grade

classroom and doing great, and they feel he's ready to have even more time

in this classroom. Last year in Kindergarten, he didn't step foot into the

" regular " classroom because he wasn't able to handle it. They have

commented that the biggest challenge with my son this year is keeping up

with his rate of learning (LOL!!) - he's like a sponge learning things so

quickly and never forgetting a thing.

In his note from school yesterday and today, his teacher said that HE read

an entire storybook out loud to his classmates both days!!! They were so

proud and excited for him.

As for the cost, chelation has been the best investment we've ever made!!!!

Compared to many interventions, it is downright " a steal " .

My son won't swallow capsules, either, so we just open up the capsule

(Kirkman's 25 mg size) and mix it in a small amount of pear juice and

syringe it in.

Best Regards,

[ ] What would you do?

> My son is 5 1/2 and in his last year of special ed. preschool. He is

> considered high-functioning autistic or PDD. He communicates with

> delayed echolalia and his receptive language is incredible! He is not

> fully potty-trained yet (goes on a schedule, and NEVER poops into the

> potty). Over the past 3 years we have tried every supplement out

> there and he is currently a patient at Pfeiffer and has been on the

> MT Promoter since July with very little improvement. I've been

> seriously considering chelation over the past 2 weeks (Maybe you've

> noticed all my recent posts!). Anyway, his hair test shows only

> elevated levels of lead. Do I have anything to lose by trying

> chelation (besides more $$$!) Have people seen results chelating

> lead? I just want some expressive language - I want to know what's

> going on in that cute little head of his!

> Thanks for your help, on this and my previous posts!

>

> P.S. Another question - If I go with DMSA, my son can't swallow a

> pill, Is there a way to get the stuff into him?

>

>

>

> =======================================================

>

[Guest guest]

Terri -

He was on the diet with no noticable improvements. We went off the

diet and He now takes Houston's Peptizyde with every meal & snack.

-- In @y..., " Terri Avalon " <tavalon@e...> wrote:

> Quick question. Is your child on the GF/CF diet?

>

> Terri

>

> Remember the movie, Wag The Dog?

> Wake up folks, we're being wagged.

>

> Terri (2002)

> [ ] What would you do?

>

>

> > My son is 5 1/2 and in his last year of special ed. preschool.

He is

> > considered high-functioning autistic or PDD. He communicates with

> > delayed echolalia and his receptive language is incredible! He is

not

> > fully potty-trained yet (goes on a schedule, and NEVER poops into

the

> > potty). Over the past 3 years we have tried every supplement out

> > there and he is currently a patient at Pfeiffer and has been on

the

> > MT Promoter since July with very little improvement. I've been

> > seriously considering chelation over the past 2 weeks (Maybe

you've

> > noticed all my recent posts!). Anyway, his hair test shows only

> > elevated levels of lead. Do I have anything to lose by trying

> > chelation (besides more $$$!) Have people seen results chelating

> > lead? I just want some expressive language - I want to know

what's

> > going on in that cute little head of his!

> > Thanks for your help, on this and my previous posts!

> >

> > P.S. Another question - If I go with DMSA, my son can't swallow

a

> > pill, Is there a way to get the stuff into him?

> >

> >

> >

> > =======================================================

> >

[Guest guest]

The DMSA from Kirkman's mixes easily with orange juice.

Re: [ ] What would you do?

> There's a good book out there called Turning Lead Into Gold.

> before my son learned to swallow pills I would mix the DMSA with lemonade

and

> shoot it down his throat with a medicine syringe.

>

> katiezizi wrote:

>

> > My son is 5 1/2 and in his last year of special ed. preschool. He is

> > considered high-functioning autistic or PDD. He communicates with

> > delayed echolalia and his receptive language is incredible! He is not

> > fully potty-trained yet (goes on a schedule, and NEVER poops into the

> > potty). Over the past 3 years we have tried every supplement out

> > there and he is currently a patient at Pfeiffer and has been on the

> > MT Promoter since July with very little improvement. I've been

> > seriously considering chelation over the past 2 weeks (Maybe you've

> > noticed all my recent posts!). Anyway, his hair test shows only

> > elevated levels of lead. Do I have anything to lose by trying

> > chelation (besides more $$$!) Have people seen results chelating

> > lead? I just want some expressive language - I want to know what's

> > going on in that cute little head of his!

> > Thanks for your help, on this and my previous posts!

> >

> > P.S. Another question - If I go with DMSA, my son can't swallow a

> > pill, Is there a way to get the stuff into him?

> >

> >

> > =======================================================

> >

[Guest guest]

> 1 - Should I have her eval. by a developmental ped? If so, does

> anyone know a good one in GA?

Hi Tricia,

Where in Ga. are you? I know of a dev. ped. on Ferry Rd. if

you know where that is, her name is Sonya . She is usually

booked for about 10-12 months though.

Alison

[Guest guest]

Alison - I am in Lagrange, GA - about 50 miles southwest of Atl. 10-

12 month wait! Oh lord! Is she in private practice or with a group?

I will inquire today about an appt. Are you in the Atl. area? Are

you familiar with the Marcus Institute? I saw someone else post about

it. Thanks for the info!

Tricia

[Guest guest]

Hi Tricia,

I think you should seek help from both a developmental pediatrician and

get an evaluation from a private speech-language pathologist.

In my experience, the developmental pediatrician was a hub. She sent us

to additional professionals (neurologist, optometrist, etc) and ordered

additional tests (fragile X, lead exposure, etc) to rule out certain

conditions. Then she wrote the prescriptions for therapy (speech, OT, etc)

as well as spelled out what sort of services he should get in the school

setting. She was a great starting point and helped us figure out where to

start. She did however put the diagnoses of: apraxia of speech and sensory

integration dysfunction into writing for us when we needed it. When push

came to shove, she was *always* there to advocate for our son. (We had an

awesome pediatrician!)

In addition, an evaluation from an SLP who is very well versed in apraxia

is invaluable. You may need this for getting appropriate therapy in the

school setting, getting private speech therapy paid for, and the list goes

on. We got out evaluation from a university clinic so it was dirt cheap

($100). Plus it was done by a faculty member who was top notch. It was the

most comprehensive and insightful evaluation that my son received. To see

if there is a university clinic in your area, go to:

http://www.speech-express.com/speech-therapy/university-clinics.html

This is just based on my experience.

Tricia Morin

North Carolina

<< suspected (knew!) she had a speech problem. SLP original diagnosis

was " severe articulation disorder " . After about 1 mo of therapy, she

told me she " really was leaning more toward apraxia " after having

worked with her. Unfortunately, SLP went on emergency medical leave

before our next session, & the new therapist was not experienced w/

apraxia. About that time, we enrolled her in EI. The 1st therapist

said " maybe " it was apraxia, the second just said " ok " . She was

receiving therapy 2x/week.

I took her to a pediatric neurologist to be evaluated. She first

told me that apraxia was usually only used to refer to stroke

patients (of course, I knew nothing about apraxia at the time, so

didn't know how off-base she was!). Anyway, she did a very quick

evaluation, watched her play a few minutes, and told us there was

nothing wrong with her.

When she turned 3, she transitioned to school system. She still sees

a therapist 2x/week, 30 min. sessions. During the summer, she saw a

different therapist who was filling in. This therapist

said " definite verbal apraxia " . She has made some wonderful

progress, but still has a ways to go. What I am questioning is:

1 - Should I have her eval. by a developmental ped? If so, does

anyone know a good one in GA?

I have recently read some info on hypotonia, and am a little

concerned she may have a very mild case. (She sits in the W position

ALL the time, had minor feeding problems as baby, could not suck a

pacifier, horrible constipation). Is a devl. ped. the one that could

diagnos that?

2 - Or should I have her evaluated by a private SLP that is

experienced with apraxia?

Although she is making progress, I want to ensure that she is

receiving the best therapy for her exact problem. (only 1 therapist

has actually wrote down that she has apraxia!)

Since she has been in therapy for 2 yrs already, is there any point

in " backtracking " and doing the things I should have done to begin

with!

[Guest guest]

Tricia:

I am also waiting for an appt with a dev ped here in Georgia. I am

in the Atlanta area and there seem to be very few of them for a city

so large. We plan on obtaining an appointment with one of the dev

peds just to reassure us with our daughter.

I know that Dr. Weintraub is highly regarded, having a great

reputation. He is in private practice and doesn't accept any

insurance. I believe that the wait is currenlty about 2-3 months.

I have also heard from a couple of people that saw Dr. Pakula at the

Marucs Inst...they have a similiar wait period however, I believe

they accept some portions of payment from insurance or Medicaid.

Another option is Augusta...near the medical center. I think her

name is , MD.

Hope this helps.

(Mom to 2.9)

--- In , " Tricia " <trimadsco@a...>

wrote:

> 1 - Should I have her eval. by a developmental ped? If so, does

> anyone know a good one in GA?

> I have recently read some info on hypotonia, and am a little

> concerned she may have a very mild case. (She sits in the W

position

> ALL the time, had minor feeding problems as baby, could not suck a

> pacifier, horrible constipation). Is a devl. ped. the one that

could

> diagnos that?

>

[Guest guest]

Get on the chelatingkids2 list. Some of the kids that are

nonresponders like yours have responded to the Transdermal DMPS. It

might be worth a try. Best wishes. Kristy

On Aug 9, 2004, at 4:15 PM, sczms wrote:

> I have been reading this list for a long time now. It has grown so

> much over the past few years.  I guess I am at a crossroads now with

> my son.  I have write a few times and still have not taken any

> radical steps to help him.  sam is now 10 years old.  Nonverbal, not

> potty trained, low functioning.  he mouths things, is aggressive and

> head bangs alot.  He is on a highly restricted diet.  I have brought

> him to allergists, DAN! dr. alternative dr. you name it.  the diet

> has helped with loose stools.  he doesn't seem to tolerate any

> supplements except vitamin c, cal and a little mag.  He has a huge

> issues with yeast.  he has been checked for heavy metals, not hair

> but stool, urine and blood.  All showing high ranges.  Nothing ever

> seems to help him.  He is getting so hard to handle.  To top things

> off he had surgery on both feet and he already re injured one of his

> feet and now it is causing some pain. 

> I have yet to chelate him for fear of him becoming so out of control

> that he'll end up in the hospital.  the one dr. who agreed to try

> chelation wanted to wait until the yeast got under control but after

> 6 month of oil of oregano, gse, diflucan yeast was still high and I

> sort of gave up on the idea.  I am also afraid of redistributing the

> metals.  Sam has had major problems since birth with GI issues and a

> dx of autism at 2yrs.  I just don't know what to do.  there are no

> Dr. who can help around here.  I keep hearing about other methods,

> transdermal patches, sprays, only using ala, I am so afraid to do

> this myself.  I am tired of the full burden of his medical stuff on

> my shoulders.  I have made a mess of things trying this for two weeks

> and trying that and screwing up his behavior more. I am asking what

> you would do?  He is home now for 5 weeks!! before school starts and

> I have some help but not much.  Plase I very much valve the opinion

> of you all on this list.  Sincerely,

>

>

>

> =======================================================

>

[Guest guest]

My son was 10 when he did Chemet (DMSA) and ALA (every 3 hours)

round the clock - and caused greater language, memory, and play with

toys that had not been touched for years. We did ABA/discrete trial

training at age 4 - but I believe there have been positive studies

of children who start at a later age, also. This program gave my son

language. I would hire a good advocate or attorney to assist me in

getting such a program for my child - obviously the school's current

program has not helped him. Andy Cutler may have suggestions to

avoid gut bugs while on chemet/ALA that you might try....For a

change, we are doing TD DMPS to see if it produces the same results

as DMSA/ALA while avoiding the gut bugs..... the best to you. -

> I have been reading this list for a long time now. It has grown so

> much over the past few years. I guess I am at a crossroads now

with

> my son. I have write a few times and still have not taken any

> radical steps to help him. sam is now 10 years old. Nonverbal,

not

> potty trained, low functioning. he mouths things, is aggressive

and

> head bangs alot. He is on a highly restricted diet. I have

brought

> him to allergists, DAN! dr. alternative dr. you name it. the diet

> has helped with loose stools. he doesn't seem to tolerate any

> supplements except vitamin c, cal and a little mag. He has a huge

> issues with yeast. he has been checked for heavy metals, not hair

> but stool, urine and blood. All showing high ranges. Nothing

ever

> seems to help him. He is getting so hard to handle. To top

things

> off he had surgery on both feet and he already re injured one of

his

> feet and now it is causing some pain.

> I have yet to chelate him for fear of him becoming so out of

control

> that he'll end up in the hospital. the one dr. who agreed to try

> chelation wanted to wait until the yeast got under control but

after

> 6 month of oil of oregano, gse, diflucan yeast was still high and

I

> sort of gave up on the idea. I am also afraid of redistributing

the

> metals. Sam has had major problems since birth with GI issues and

a

> dx of autism at 2yrs. I just don't know what to do. there are no

> Dr. who can help around here. I keep hearing about other methods,

> transdermal patches, sprays, only using ala, I am so afraid to do

> this myself. I am tired of the full burden of his medical stuff

on

> my shoulders. I have made a mess of things trying this for two

weeks

> and trying that and screwing up his behavior more. I am asking

what

> you would do? He is home now for 5 weeks!! before school starts

and

> I have some help but not much. Plase I very much valve the

opinion

> of you all on this list. Sincerely,

[Guest guest]

I would chelate, Andy's protocol. My son's issues are not the same as

yours, but he has gotten much *more manageable, not less, since

beginning chelation. Much better socialization, happier, plus at

about round 15 he lost his phenol sensitivities. If I had waited for

yeast to get really under control I'd never have begun.

One thing to keep in mind is that you will know fairly quickly

whether or not chelation will help him.

I'm not using a doctor. It really isn't as hard as it seems.

Nell

> I have been reading this list for a long time now. It has grown so

> much over the past few years. I guess I am at a crossroads now

with

> my son. I have write a few times and still have not taken any

> radical steps to help him. sam is now 10 years old. Nonverbal,

not

> potty trained, low functioning. he mouths things, is aggressive

and

> head bangs alot. He is on a highly restricted diet. I have

brought

[Guest guest]

>>Nonverbal, not

> potty trained, low functioning. he mouths things, is aggressive and

> head bangs alot.

For many kids, mouthing things is a result of zinc deficiency.

For my #3, it was a result of him eating foods/supplements he did not

tolerate, or when he had a yeast problem.

>>He is on a highly restricted diet.

Have you considered enzymes? What foods does he eat?

> I have yet to chelate him for fear of him becoming so out of control

> that he'll end up in the hospital.

I can understand that. But you might want to consider low doses of

ALA and see what happens after one round.

Dana

[Guest guest]

> I have been reading this list for a long time now. It has grown so

> much over the past few years. I guess I am at a crossroads now

with

> my son. I have write a few times and still have not taken any

> radical steps to help him. sam is now 10 years old. Nonverbal,

not

> potty trained, low functioning. he mouths things, is aggressive

and

> head bangs alot. He is on a highly restricted diet. I have

brought

> him to allergists, DAN! dr. alternative dr. you name it. the diet

> has helped with loose stools. he doesn't seem to tolerate any

> supplements except vitamin c, cal and a little mag. He has a huge

> issues with yeast. he has been checked for heavy metals, not hair

> but stool, urine and blood. All showing high ranges. Nothing

ever

> seems to help him. He is getting so hard to handle. To top

things

> off he had surgery on both feet and he already re injured one of

his

> feet and now it is causing some pain.

> I have yet to chelate him for fear of him becoming so out of

control

> that he'll end up in the hospital. the one dr. who agreed to try

> chelation wanted to wait until the yeast got under control but

after

> 6 month of oil of oregano, gse, diflucan yeast was still high and

I

> sort of gave up on the idea. I am also afraid of redistributing

the

> metals. Sam has had major problems since birth with GI issues and

a

> dx of autism at 2yrs. I just don't know what to do. there are no

> Dr. who can help around here. I keep hearing about other methods,

> transdermal patches, sprays, only using ala, I am so afraid to do

> this myself. I am tired of the full burden of his medical stuff

on

> my shoulders. I have made a mess of things trying this for two

weeks

> and trying that and screwing up his behavior more. I am asking

what

> you would do? He is home now for 5 weeks!! before school starts

and

> I have some help but not much. Plase I very much valve the

opinion

> of you all on this list. Sincerely,

I know you said there are no doctors in your area that can help--

Have you looked for " other " kinds of practitioners? What I'm

thinking of is to look for someone who can make additional

useful suggestions for the yeast. I would look for an

ND (naturopath) for this. Other practitioners like a

chiropractor or acupunturist might also be some help.

I suggest this as something to consider, of course up

to you to decide.

You could also consider the LOW end dose of ALA and/or DMSA.

If you don't have amalgams yourself, you can try a couple

of rounds on yourself.

good wishes,

Moria

[Guest guest]

I think you did everything you can do. It was so great of you to say

anything at all! Hopefully she was just feeling defensive becuase

another mother pointer it out, and it will get her thinking some and

check into it more. Have you seen her older son? How does he look?

If you really wanted to push the issue, you could bring in pictures

of other babies with tort/scaph and info. But don't expect her to be

gracious about it.

It is so hard to see something like that-I just received pics of my

friend's twins (I have not seen them in person, they are in another

state) and one of the babies clearly has scaph. Not surprising, the

babies were 7'11 and 6'3. The 7'11 baby was the one with the scaph

head, it was so obvious, especially lying next to the other baby. I

could not tell from the pic about tort. Anyways, I have not said

anything yet and kick myself for it, it is such a delicate matter to

bring up.

I have another friend whose baby has tort. Even though she knows our

kids have the smae thing, she has not wanted to talk about it at all

and refused to do any reading about it even when I have given her

sites to go to. Then she stopped PT WAY too early. I figure I tried

to say something and was given the brush off and then the subject was

avoided by her ever since-nothing else I can do. Makes me sad.

Dara

mom to JOnah/20 months/tort/plagio-Doc Band Grad/low tone

--- In Plagiocephaly , " Hawley " <LHawley@s...>

wrote:

> In my mom's club, there's a lady who just had triplets. She

brought them to today's meeting/Halloween party and I noticed that

all three of the babies have some sort of degree of torticollis and

at least 2 of the babies have Scaphocephaly. I don't know this lady

as I just joined the club but felt that should at least bring up the

tort issue. I went up and introduced my self and commented on her

cute babies. I then said " I know I really don't know you but I think

you should have your pediatrician check your babies for tort. " I

then explained what tort is, that it could lead to plagio and that

had plagio and had to wear a helmet. She told me her older son

had tort and that he outgrew it and didn't seem concerned at all and

her one baby had it BAD! The whole time his ear was practically

touching his shoulder. I didn't force the issue and didn't bring up

the Scaphocephaly. She seems a bit put out that I brought this up.

Should I have talked to her about the Scaphocephaly? What would you

have done?

>

> If let untreated, would Scaphocephaly " fix " itself or at least

become more rounded?

>

> I just don't know what to do!

>

> --

[Guest guest]

Hi ,

At this point, I don't think there is much more you can do. It

sounds like the babies are very young, so maybe as you get to know

her more you can throw in a bit more about it. Another idea is you

could bring in some literature about it to share with all the moms

asking if they could possibly all share it with a friend or

something. That way you aren't singling that one mom out, but are

still getting the education out there. Some moms may ask you more

questions, etc. I made a great Handout that is in our files section

that you are welcome to use and change for 's story.

, mom to Hannah, DOCgrad

Cape Cod, Ma

--- In Plagiocephaly , " Hawley " <LHawley@s...>

wrote:

> In my mom's club, there's a lady who just had triplets. She

brought them to today's meeting/Halloween party and I noticed that

all three of the babies have some sort of degree of torticollis and

at least 2 of the babies have Scaphocephaly. I don't know this lady

as I just joined the club but felt that should at least bring up the

tort issue. I went up and introduced my self and commented on her

cute babies. I then said " I know I really don't know you but I

think you should have your pediatrician check your babies for

tort. " I then explained what tort is, that it could lead to plagio

and that had plagio and had to wear a helmet. She told me her

older son had tort and that he outgrew it and didn't seem concerned

at all and her one baby had it BAD! The whole time his ear was

practically touching his shoulder. I didn't force the issue and

didn't bring up the Scaphocephaly. She seems a bit put out that I

brought this up. Should I have talked to her about the

Scaphocephaly? What would you have done?

>

> If let untreated, would Scaphocephaly " fix " itself or at least

become more rounded?

>

> I just don't know what to do!

>

> --

[Guest guest]

There's not much you can do if she doesn't want to hear it.

At least she knows what tort is. I suppose if you want to pursue this

further bring in a copy of the CT pampelets (or print it out from

plagiocephaly.org site)I'm referring to the one that shows the

different head shapes and severity chart. I know it shows one head

shape that is scaphy. That may be easier to handle then say a huge

explaination of what schapy is.

Good luck,

Crista-Grayslake, IL

D-12 mo-brachy DOCgrad

--- In Plagiocephaly , " Hawley " <LHawley@s...>

wrote:

> In my mom's club, there's a lady who just had triplets. She

brought them to today's meeting/Halloween party and I noticed that

all three of the babies have some sort of degree of torticollis and

at least 2 of the babies have Scaphocephaly. I don't know this lady

as I just joined the club but felt that should at least bring up the

tort issue. I went up and introduced my self and commented on her

cute babies. I then said " I know I really don't know you but I think

you should have your pediatrician check your babies for tort. " I

then explained what tort is, that it could lead to plagio and that

had plagio and had to wear a helmet. She told me her older son

had tort and that he outgrew it and didn't seem concerned at all and

her one baby had it BAD! The whole time his ear was practically

touching his shoulder. I didn't force the issue and didn't bring up

the Scaphocephaly. She seems a bit put out that I brought this up.

Should I have talked to her about the Scaphocephaly? What would you

have done?

>

> If let untreated, would Scaphocephaly " fix " itself or at least

become more rounded?

>

> I just don't know what to do!

>

> --

[Guest guest]

,

I really think you did all you could. I applaud you for having the courage to approach her. I think approaching about tort may be a little easier and you did a great segway into plagio. Maybe at the next meeting if it's still very noticeable ask how there last check-up went, how they are doing with milestones (since tort can delay those), etc.

You did great!!!

mom to na Hawley <LHawley@...> wrote:

In my mom's club, there's a lady who just had triplets. She brought them to today's meeting/Halloween party and I noticed that all three of the babies have some sort of degree of torticollis and at least 2 of the babies have Scaphocephaly. I don't know this lady as I just joined the club but felt that should at least bring up the tort issue. I went up and introduced my self and commented on her cute babies. I then said "I know I really don't know you but I think you should have your pediatrician check your babies for tort." I then explained what tort is, that it could lead to plagio and that had plagio and had to wear a helmet. She told me her older son had tort and that he outgrew it and didn't seem concerned at all and her one baby had it BAD! The whole time his ear was practically touching his shoulder. I didn't force the issue and didn't bring up the Scaphocephaly. She seems a bit

put out that I brought this up. Should I have talked to her about the Scaphocephaly? What would you have done?

If let untreated, would Scaphocephaly "fix" itself or at least become more rounded?

I just don't know what to do!

--

For more plagio info

[Guest guest]

Hi, Our plastic surgeon also left the decision up to us for our 7 month old daughter. I don't know her numbers but I would have said she is mild to moderate (nobody notices anything until we point it out, although our orthotist noticed her facial assymetry right away). I was initially mostly concerned with her appearance in the future (don't want her to look "funny" to other kids, etc). But as I read more, I realized beyond appearance and the psychological affects, etc, there is probable correlation with TMJ pain and migraine headache. There is also definite correlation with visual field disturbances. The decision was even easier for us because our insurance paid 100% and our orthotist (recommended by the plastic surgeon) is only 20 minutes away. We decided to do it. If we didn't get any correction I would probably have been OK since I think my daughter is not as severe as some other children. However, we are already seeing improvement and it makes me feel that we made the right decision. We have only had 1 family member give us any grief for "messing with her head". I have chosen to not discuss the helmet or progress with that individual (I do like them otherwise!)

Don't know if that helps. Every family and circumstances are differnent. Good luck with your decision.

(mom to Georgia, born 1/27/05, DDH/plagio, Starband 8/20/05)

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of juliemurray_1Sent: Wednesday, September 07, 2005 7:17 PMPlagiocephaly Subject: What would you do?We met with a plastic surgeon today. Our 5 mos old son has a flat head in the back. Basically he said the decision on whether to get a helmet was up to us. His measurements were .97 and ours were both around .75 (I guess they look for what genetically he would likely be). There is very little asymmetry. I guess I'm wondering what people think when the case is borderline...helmet or no helmet? I don't want to do something that isn't necessary but also don't want to not do it and regret it later. Any advice or insight?

[Guest guest]

Hi, Our plastic surgeon also left the decision up to us for our 7 month old daughter. I don't know her numbers but I would have said she is mild to moderate (nobody notices anything until we point it out, although our orthotist noticed her facial assymetry right away). I was initially mostly concerned with her appearance in the future (don't want her to look "funny" to other kids, etc). But as I read more, I realized beyond appearance and the psychological affects, etc, there is probable correlation with TMJ pain and migraine headache. There is also definite correlation with visual field disturbances. The decision was even easier for us because our insurance paid 100% and our orthotist (recommended by the plastic surgeon) is only 20 minutes away. We decided to do it. If we didn't get any correction I would probably have been OK since I think my daughter is not as severe as some other children. However, we are already seeing improvement and it makes me feel that we made the right decision. We have only had 1 family member give us any grief for "messing with her head". I have chosen to not discuss the helmet or progress with that individual (I do like them otherwise!)

Don't know if that helps. Every family and circumstances are differnent. Good luck with your decision.

(mom to Georgia, born 1/27/05, DDH/plagio, Starband 8/20/05)

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of juliemurray_1Sent: Wednesday, September 07, 2005 7:17 PMPlagiocephaly Subject: What would you do?We met with a plastic surgeon today. Our 5 mos old son has a flat head in the back. Basically he said the decision on whether to get a helmet was up to us. His measurements were .97 and ours were both around .75 (I guess they look for what genetically he would likely be). There is very little asymmetry. I guess I'm wondering what people think when the case is borderline...helmet or no helmet? I don't want to do something that isn't necessary but also don't want to not do it and regret it later. Any advice or insight?

[Guest guest]

The decision to band is one that is difficult -- and every one has

different opinions on it. However, the way I see it is, it won't

hurt to band and get the correction while you can. You don't want to

be in a position of regretting, as you said. I would put a helmet on

my kids if it would help them, even if they were mild.

You still have time though... you can still try repo'ing and get

more correction that way. Whatever decision you make, trust in it.

Kim

mom to Kaela - 10 (no issues)

Jaxson -- plagio, tort CranioCap grad 04/09/04 Craniotomy

w/reconstruction of skull to correct plagio 01/10/05

and new mom to Eli, born 07/28/05

> We met with a plastic surgeon today. Our 5 mos old son has a flat

> head in the back. Basically he said the decision on whether to

get a

> helmet was up to us. His measurements were .97 and ours were both

> around .75 (I guess they look for what genetically he would likely

> be). There is very little asymmetry. I guess I'm wondering what

> people think when the case is borderline...helmet or no helmet?

I

> don't want to do something that isn't necessary but also don't

want to

> not do it and regret it later. Any advice or insight?

[Guest guest]

The decision to band is one that is difficult -- and every one has

different opinions on it. However, the way I see it is, it won't

hurt to band and get the correction while you can. You don't want to

be in a position of regretting, as you said. I would put a helmet on

my kids if it would help them, even if they were mild.

You still have time though... you can still try repo'ing and get

more correction that way. Whatever decision you make, trust in it.

Kim

mom to Kaela - 10 (no issues)

Jaxson -- plagio, tort CranioCap grad 04/09/04 Craniotomy

w/reconstruction of skull to correct plagio 01/10/05

and new mom to Eli, born 07/28/05

> We met with a plastic surgeon today. Our 5 mos old son has a flat

> head in the back. Basically he said the decision on whether to

get a

> helmet was up to us. His measurements were .97 and ours were both

> around .75 (I guess they look for what genetically he would likely

> be). There is very little asymmetry. I guess I'm wondering what

> people think when the case is borderline...helmet or no helmet?

I

> don't want to do something that isn't necessary but also don't

want to

> not do it and regret it later. Any advice or insight?

[Guest guest]

Hi. I just wanted to let you know that we were in the same postion

you were. Our baby Brielle was diagnosed ( I picked it up) at 4mos

when we began repostioning her. All the specialists (neurosurgeon,

cranial facial specialist, physical therapist, pediatrician and

cranial sacral therapist) said she was mild. Cranial tech said she

was moderate and recommended the band. Her measurements were 7mm

cranial vault, 3mm eyes, 5mm ears. I made myself sick with the

decision making. Well, she is 8mos now and the end of her 6month we

decided, not to band. She looks great. Noone can notice unless you

were the plagiopolice that she has some flatness in the back left

side. Her eyes and ears looks great. Some days, I do say what would

she look like if we banded her, but honestly, I don't know how much

more correction she would have gotten. You can check her out at

Brielle B on plagio kids photos. I will post more pictures, I took

some yesterday, but need my husbands help to put them on the

computer. I don't regret not banding her, she is beautiful. ARe you

keeping him off of his flat spot. Why don't you do repositioning for

a month and then decide? Good luck, Debbie and Brielle NJ

> > We met with a plastic surgeon today. Our 5 mos old son has a

flat

> > head in the back. Basically he said the decision on whether to

> get a

> > helmet was up to us. His measurements were .97 and ours were

both

> > around .75 (I guess they look for what genetically he would

likely

> > be). There is very little asymmetry. I guess I'm wondering what

> > people think when the case is borderline...helmet or no helmet?

> I

> > don't want to do something that isn't necessary but also don't

> want to

> > not do it and regret it later. Any advice or insight?

[Guest guest]

Hi. I just wanted to let you know that we were in the same postion

you were. Our baby Brielle was diagnosed ( I picked it up) at 4mos

when we began repostioning her. All the specialists (neurosurgeon,

cranial facial specialist, physical therapist, pediatrician and

cranial sacral therapist) said she was mild. Cranial tech said she

was moderate and recommended the band. Her measurements were 7mm

cranial vault, 3mm eyes, 5mm ears. I made myself sick with the

decision making. Well, she is 8mos now and the end of her 6month we

decided, not to band. She looks great. Noone can notice unless you

were the plagiopolice that she has some flatness in the back left

side. Her eyes and ears looks great. Some days, I do say what would

she look like if we banded her, but honestly, I don't know how much

more correction she would have gotten. You can check her out at

Brielle B on plagio kids photos. I will post more pictures, I took

some yesterday, but need my husbands help to put them on the

computer. I don't regret not banding her, she is beautiful. ARe you

keeping him off of his flat spot. Why don't you do repositioning for

a month and then decide? Good luck, Debbie and Brielle NJ

> > We met with a plastic surgeon today. Our 5 mos old son has a

flat

> > head in the back. Basically he said the decision on whether to

> get a

> > helmet was up to us. His measurements were .97 and ours were

both

> > around .75 (I guess they look for what genetically he would

likely

> > be). There is very little asymmetry. I guess I'm wondering what

> > people think when the case is borderline...helmet or no helmet?

> I

> > don't want to do something that isn't necessary but also don't

> want to

> > not do it and regret it later. Any advice or insight?