New to Group

[Guest guest]

Oy, yes, we hear this from my extended family but not so much from my

in-laws, thank goodness.

We've also heard it from personnel at Sasha's school -- last day of second

grade today, hooray!

It's annoying, but what can we do? It's hard to understand, truly, unless

one can walk in our shoes.

T

mom of Sasha, 7

(and Gena, 5)

At 04:35 AM 6/17/2005 +0000, you wrote:

> B,

>Thank you for your response.

>

>As far as the " clearance " thing...he was meaning that my son could

>never have a goverment job.

>

>My son is very special and knowing now about his AS and having a

>wonderful therapist has helped me appreciate ny's view of the

>world. It also has helped make those not so nice remakes about my

>baby boy and my parenting ablities not hurt so much.

>

>I do have one question though......has anyone else has someone tell

>them that they are just looking for an excuse for their child's

>behavior? sorry just a little bothered by the in-laws comments.

>

>Mandi

>

[Guest guest]

Thank you everyone for the responses. Sometimes I feel soo alone and

that no one else is going through it. I have just decided I am not

going to discuss anything about his AS or his treatment with them. He

does tell everyone that he goes to therapy and when they look at me I

just get busy doing something else and let my husband handle his

family.

Thank you all again....

Mandi M. No. CA

Haili-9-Heart condition

-6-ADHD

ny-4-AS

[Guest guest]

Welcome Darren and ...

Hope you find this to be a good place for information and encouragement...I

think there are others on the list from UK. Looking forward to getting to

know you and your family better...jump in to the conversation...

Blessings,

Gail

[Guest guest]

Delmar,

We are from Lancaster County and we see Larry , DO in Lansdale, PA

(215-412-4910). He is a family practice physician and also a DAN doctor.

He is also treating a child with autism. He is wonderful, compassionate

physician who listens to his patients. Another plus is he is a covered

provider by our BC/BS insurance. Here are some readings on questions on

finding a physician:

http://home.earthlink.net/~moriam/HOW_TO_find_doctor.html

Most of us get our hair elements testing done through DDI since they have

the largest data base and Andy Cutler has developed 'counting rules' to

determine the probability of mineral transport derangement based on heavy

metal toxicity. Read more here:

http://home.earthlink.net/~moriam/HOW_TO_hair_test.html

If you want more information about Dr. , please feel free to e-mail me

offlist at ( jhines @ ptd.net ) without the spaces before and after the @.

I believe that I corresponded with your wife through Generation Rescue.

This list has a lot of wonderful information to help you heal your son. I

have learned a lot and continue to learn from these wonderful people!

Jackie---

> Greetings! We are new to this group. We have a 3 year old son that has

> been diagnosed with autism. In our searching journey, we discovered that

> he

> has a high level of lead, first through blood testing and then through

> hair

> testing. We have developed a home program of therapy for him, following

> the

> Lovus method somewhat. We are currently chelating him using an oral

> chelation product. We haven't seen a huge improvement yet, but are

> assuming

> that it will take time. We are considering trying to find a DAN doctor

> that

> will be able to assist us in finding out whether he has mercury poisoning

> also. He did have some of his shots, but we got cold feet before he had

> all

> his shots. So there is a possibility of mercury poisoning. We are

> looking

> for all the info we can get as it relates to finding a good DAN doctor as

> local as possible. Looking forward to learning and sharing.

[Guest guest]

Delmar,

Welcome! You might want to spend several weeks just looking in the files

section of this group. I've been on this list for five years and there is

tons of information.

Barb

[ ] New to group

>

> Greetings! We are new to this group. We have a 3 year old son that has

> been diagnosed with autism. In our searching journey, we discovered that

> he

> has a high level of lead, first through blood testing and then through

> hair

> testing. We have developed a home program of therapy for him, following

> the

> Lovus method somewhat. We are currently chelating him using an oral

> chelation product. We haven't seen a huge improvement yet, but are

> assuming

> that it will take time. We are considering trying to find a DAN doctor

> that

> will be able to assist us in finding out whether he has mercury poisoning

> also. He did have some of his shots, but we got cold feet before he had

> all

> his shots. So there is a possibility of mercury poisoning. We are

> looking

> for all the info we can get as it relates to finding a good DAN doctor as

> local as possible. Looking forward to learning and sharing.

>

> Delmar

>

>

>

> Thanks!

>

> Delmar & Martha Binkley

> Email: walcom@...

> 236 Deep Run Road

> Myerstown, PA 17067

> Phone/Fax: 717-933-8094

> If calling about our

> long distance service use

> Phone/Fax: 1-866-616-7435

>

>

> Outgoing mail is Virus Scanned byNorman Data Defense. Inbound Spam

> reduced 98.2% byVircom Sieve.

>

>

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

>

[Guest guest]

Welcome to the list. What chelation product are you using. DMSA is used to

chelate lead but with Andy's recommended dosing and schedule in case he also has

mercury. If you had the hair element testing done through DDI you can post it

here (including colors and over or under) or apply the counting rules found in

the FAQs of this list.

S S

<tt>

<BR>

Greetings!  We are new to this group.  We have a 3 year old son that has<BR>

been diagnosed with autism.  In our searching journey, we discovered that he<BR>

has a high level of lead, first through blood testing and then through hair<BR>

testing.  We have developed a home program of therapy for him, following the<BR>

Lovus method somewhat.  We are currently chelating him using an oral<BR>

chelation product.  We haven't seen a huge improvement yet, but are assuming<BR>

that it will take time.  We are considering trying to find a DAN doctor that<BR>

will be able to assist us in finding out whether he has mercury poisoning<BR>

also.  He did have some of his shots, but we got cold feet before he had all<BR>

his shots.  So there is a possibility of mercury poisoning.  We are looking<BR>

for all the info we can get as it relates to finding a good DAN doctor as<BR>

local as possible.  Looking forward to learning and sharing.  <BR>

<BR>

Delmar<BR>

<BR>

<BR>

<BR>

Thanks!<BR>

<BR>

Delmar & Martha Binkley<BR>

Email: walcom@...<BR>

236 Deep Run Road<BR>

Myerstown, PA  17067<BR>

Phone/Fax: 717-933-8094<BR>

If calling about our <BR>

long distance service use <BR>

Phone/Fax: 1-866-616-7435<BR>

<BR>

<BR>

Outgoing mail is Virus Scanned byNorman Data Defense.        Inbound Spam

reduced 98.2% byVircom Sieve.        <BR>

</tt>

<!-- |**|begin egp html banner|**| -->

<br><br>

<tt>

=======================================================<BR>

[Guest guest]

Larraine Kember <larrydot@...> wrote:

Hello Everyone,

My name is Larraine and my son is diagnosed Aspergers with autistic

tendencies, and they are ruling out bipolar (even though he is taking

medication for it). He also las learning disabilities. He's a

wonderful boy and I am looking for ideas and support from anyone. We

have just recently been approved for services from Regional Center

(after trying for almost 2 years) and they are providing, in addition

to other things, respite care. This is all new to me as I've always

taken care of him, but the break will be nice and a good chance to

spend some one on one time with my daughter.

I look forward to reading the messages here.

Thank you!

Larraine

Hi Larraine, What an interesting name you have! Glad you found us and feel

free to jump in and join us. Sounds like you are on the right track in getting

some help as well!

Roxanna ô¿ô

Don't take life too seriously; No one gets out alive.

__________________________________________________

[Guest guest]

darren chapman <bonzia1975@...> wrote:hi everyone ive just joined this

group as we have just found the my son

josh has asperfers syndrome im not shocked that he has some form of

autism or learning problems just now have a name for it im from crawley

in west sussex uk is anyone else from around my area or know of any

groups that are

regards darren and tracey

Welcome Darren and Tracey! We do have a few people from England hanging out

here from time to time. Feel free to join in the conversation here anytime!

Roxanna ô¿ô

Don't take life too seriously; No one gets out alive.

---------------------------------

Start your day with - make it your home page

[Guest guest]

Hi Randi,

By " mainstreamed " , do you mean it as it's used in education, or do you

mean " recovered " -- as in physically recovered and indestinguishable

from a typically developing child?

Either way, the answer to your question is yes, but it's a road that

takes a lot of patience and requires a lot of support. And as all

children are different, they do not all respond the same way to

treatment. But I know of several who have completely recovered. And

they are all boys.

Just like the " autistic " population is primarily boys, the bulk of Dr.

Goldberg's patients are boys, too. My son is 7.5. He has been in

treatment with Dr. Goldberg for a little over three years. When he

started treatment, in addition to his " autistic " behaviors, he was a

sick little boy -- he had major yeast problems, latent retroviral

activity, frequent viral and bacterial infections, a low Natural

Killer cell count, multiple food sensitivities, and more. His

complexion was pale and he had dark circles under his eyes. These are

typical of the physical markers that our children have. Under Dr. G's

treatment, my son is now *physically* recovered, with none of these

conditions present in his body. He has regained the sparkle he had

when he was an infant, his color is good and the dark circles are

gone! His brain still has a lot of catching up to do, however, and

this takes a longer than the physical recovery. We still have a lot

of work to do with him to get him caught up, emotionally and

behaviorally, with his typical peers, but this fall he will be fully

included in a regular education classroom for the first time! He is

going to regular summer camp right now, three days a week, and having

the time of his life. A year ago, he couldn't have been included in

either of these, even with an aide.

It hasn't been easy, to say the very least. It's been a wild, bumpy,

roller-coaster ride, and I don't like roller-coasters!! But with

loving support from my family, and great moral support and information

from this group, we've been able to stick with it, and it's paid off.

Hope that helps, and best wishes

,

Donna

> has anyone goten mainstreamed using dr. goldberg prodcol. i only

seem

> to meet girls mot many boys if you could anwer this fior me. I son

is

> already six and we have done THe dan(cleation) nothing and we are

> thinking of Dr. goldberg but i seem to think he gets girls better.

it

> this true. thanks randi

[Guest guest]

Dear Randi,

Our son has been mainstreamed for several years now. He is currently 10.5, and

we've been with Dr. Goldberg for eight years. We know of several other boys

(one very personally, a good family friend) whose recoveries have similar

components, so feel free to contact me personally if you wish for more

information.

Warren

new to group

has anyone goten mainstreamed using dr. goldberg prodcol. i only seem

to meet girls mot many boys if you could anwer this fior me. I son is

already six and we have done THe dan(cleation) nothing and we are

thinking of Dr. goldberg but i seem to think he gets girls better. it

this true. thanks randi

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Donna and I are raising the same kids. My son is 5 1/2 and starts

kindergarten next month....public school, regular old classroom, all-

day every day. Bumpy ride yes, but with a general trend always

pointed up.

> > has anyone goten mainstreamed using dr. goldberg prodcol. i only

> seem

> > to meet girls mot many boys if you could anwer this fior me. I

son

> is

> > already six and we have done THe dan(cleation) nothing and we

are

> > thinking of Dr. goldberg but i seem to think he gets girls

better.

> it

> > this true. thanks randi

[Guest guest]

I would just say Ditto to what Donna said for my older son and my

younger son is completely recovered. Praise god for Dr G. Jerri

Message: 2

Date: Sun, 24 Jul 2005 17:05:15 -0000

From: " Donna B. " <donnaaron@...>

Subject: Re: new to group

Hi Randi,

By " mainstreamed " , do you mean it as it's used in education, or do you

mean " recovered " -- as in physically recovered and indestinguishable

from a typically developing child?

Either way, the answer to your question is yes, but it's a road that

takes a lot of patience and requires a lot of support. And as all

children are different, they do not all respond the same way to

treatment. But I know of several who have completely recovered. And

they are all boys.

Just like the " autistic " population is primarily boys, the bulk of Dr.

Goldberg's patients are boys, too. My son is 7.5. He has been in

treatment with Dr. Goldberg for a little over three years. When he

started treatment, in addition to his " autistic " behaviors, he was a

sick little boy -- he had major yeast problems, latent retroviral

activity, frequent viral and bacterial infections, a low Natural

Killer cell count, multiple food sensitivities, and more. His

complexion was pale and he had dark circles under his eyes. These are

typical of the physical markers that our children have. Under Dr. G's

treatment, my son is now *physically* recovered, with none of these

conditions present in his body. He has regained the sparkle he had

when he was an infant, his color is good and the dark circles are

gone! His brain still has a lot of catching up to do, however, and

this takes a longer than the physical recovery. We still have a lot

of work to do with him to get him caught up, emotionally and

behaviorally, with his typical peers, but this fall he will be fully

included in a regular education classroom for the first time! He is

going to regular summer camp right now, three days a week, and having

the time of his life. A year ago, he couldn't have been included in

either of these, even with an aide.

It hasn't been easy, to say the very least. It's been a wild, bumpy,

roller-coaster ride, and I don't like roller-coasters!! But with

loving support from my family, and great moral support and information

from this group, we've been able to stick with it, and it's paid off.

Hope that helps, and best wishes

,

Donna

[Guest guest]

Hi ,

Welcome to the group. photos is acting up, we're not sure why

no one can upload pics. Keep trying hopefully it will be fixed soon.

3 months is still a very young age. Have a look in the files section

under repositioning. We have tons of advice. With 3 under 3 it may

be difficult. The AAP usually recommends repo until 5 months. I

would start recording his headshape with pictures. Take them from

aerial view, each side, front and back. Try to get the same angle

each time. Repeat every 2-4 weeks. Also, note your repo efforts in a

journal, with pictures (ie pictures of tummy time and sleep

positioning, etc), receipts of repo products. These items can help

you with insurance. If your son has been diagnosed with plagio it is

not a cosmetic condition. It is an abnormality in the headshape.

Your repo efforts will be hampered by his tort. Did they give you

some at home stretches and strengthening ideas? or is he going to be

in PT? Also in the files section we have some tips. Tummy time is

key!

We also have tips for fighting insurance.

Repo Headquarters (if morr than one line you will have to copy & paste)

Plagiocephaly/files/Repositioning%

20Headquarters/

Torticollis Help

Plagiocephaly/files/Torticollis%

20Help/

Insurance Help

Plagiocephaly/files/Insurance%

20Help/

Look at the 1st step for insurance document.

I can't wait to see pictures.

mom to na, 2 yrs (DOC Grad) &

Kiersten, 2 months (Preventative Repo)

www.thefilyaws.com

> Hey everyone!!! I just found this group via my aunt, she sent me

the

> link. My son Aiden (3 months old) has Torticollis and plagio. The

> doctor and the physical therapist keeps telling us that it will take

> time but it will go back to its original shape. Well it has been

> almost a month since we have been doing the stretchs and

repositioning

> and his head is just the same maybe even worse. Now what do we do?

We

> have an HMO which will not cover a band/helmet because it is

considered

> cosmetic. Any ideas? I tried to make a photo album with some

pictures

> but it would not work for some reason (

>

>

> Mommie to Three Boys under three!!!

> Ethan, Connor and Aiden

[Guest guest]

Welcome ,

My name is Cheryl and I live in Southern CA. My daughter McKenzie is 8 1/2 months and we are getting our starband on Thursday. We also have HMO (Kaiser) Who did not cover the band. BUT they did refer us to an outside orthopedic who speicalizes in bands and casting that does it for half price for pateints that do not have insurance that will cover it. It still cost 1554.00 But it is better than full price. Maybe you can ask your Dr's or Ortho if they know of anything in your area that will do the same. I look forward to seeing the pictures of your little one once you are able to download them. It sounds like you have your hand full with 3 little boys. I have one boy and a girl and the boy is ALOT more work...(right now that is)

Take care and Good luck.

Cheryl

Mother of McKenzie 8 1/2 months

Starband on Aug 11th OLeary <seanliz2000@...> wrote:

Hey everyone!!! I just found this group via my aunt, she sent me the link. My son Aiden (3 months old) has Torticollis and plagio. The doctor and the physical therapist keeps telling us that it will take time but it will go back to its original shape. Well it has been almost a month since we have been doing the stretchs and repositioning and his head is just the same maybe even worse. Now what do we do? We have an HMO which will not cover a band/helmet because it is considered cosmetic. Any ideas? I tried to make a photo album with some pictures but it would not work for some reason ( Mommie to Three Boys under three!!!Ethan, Connor and Aiden__________________________________________________

[Guest guest]

Welcome ,

My name is Cheryl and I live in Southern CA. My daughter McKenzie is 8 1/2 months and we are getting our starband on Thursday. We also have HMO (Kaiser) Who did not cover the band. BUT they did refer us to an outside orthopedic who speicalizes in bands and casting that does it for half price for pateints that do not have insurance that will cover it. It still cost 1554.00 But it is better than full price. Maybe you can ask your Dr's or Ortho if they know of anything in your area that will do the same. I look forward to seeing the pictures of your little one once you are able to download them. It sounds like you have your hand full with 3 little boys. I have one boy and a girl and the boy is ALOT more work...(right now that is)

Take care and Good luck.

Cheryl

Mother of McKenzie 8 1/2 months

Starband on Aug 11th OLeary <seanliz2000@...> wrote:

Hey everyone!!! I just found this group via my aunt, she sent me the link. My son Aiden (3 months old) has Torticollis and plagio. The doctor and the physical therapist keeps telling us that it will take time but it will go back to its original shape. Well it has been almost a month since we have been doing the stretchs and repositioning and his head is just the same maybe even worse. Now what do we do? We have an HMO which will not cover a band/helmet because it is considered cosmetic. Any ideas? I tried to make a photo album with some pictures but it would not work for some reason ( Mommie to Three Boys under three!!!Ethan, Connor and Aiden__________________________________________________

[Guest guest]

Cheryl,

I am so glad to finally read that someone else is in California. I

am also waiting to hear how McKenzie's fitting goes Thursday because

our kids are so similar. My Aidan will be 8 1/2 months (7 adjusted)

at his fitting on the 15th and he's also getting a starband. I'm

glad to know that someone may be having the same issues at the same

time with the same aged infant.

> Hey everyone!!! I just found this group via my aunt, she sent me

the

> link. My son Aiden (3 months old) has Torticollis and plagio. The

> doctor and the physical therapist keeps telling us that it will

take

> time but it will go back to its original shape. Well it has been

> almost a month since we have been doing the stretchs and

repositioning

> and his head is just the same maybe even worse. Now what do we

do? We

> have an HMO which will not cover a band/helmet because it is

considered

> cosmetic. Any ideas? I tried to make a photo album with some

pictures

> but it would not work for some reason (

>

>

> Mommie to Three Boys under three!!!

> Ethan, Connor and Aiden

>

>

>

>

>

>

> For more plagio info

[Guest guest]

Hi ~

The error message I get when I try to add an album says NOTADD Any

idea what that means??? Anyways yes he is in pt once a week and I

also do stretchs with him at home 6-7 times a day. We are doing the

repostioning when he sleeps by using a side sleeper for the other

side. His tort is getting a little better but I am sure he has

plagio because of it, it looks like someone just took the side of

his head and pushed it forward. Also his soft spot is almost closed

up? The doctor says its normal but I think he is a little young.

He was also early so really he's 2 months. Anywho I guess I will

just keep with the stretchs and pt.

Thank,

Mommie to Three Boys under Three

Ethan, Connor, and Aiden

> > Hey everyone!!! I just found this group via my aunt, she sent

me

> the

> > link. My son Aiden (3 months old) has Torticollis and plagio.

The

> > doctor and the physical therapist keeps telling us that it will

take

> > time but it will go back to its original shape. Well it has

been

> > almost a month since we have been doing the stretchs and

> repositioning

> > and his head is just the same maybe even worse. Now what do we

do?

> We

> > have an HMO which will not cover a band/helmet because it is

> considered

> > cosmetic. Any ideas? I tried to make a photo album with some

> pictures

> > but it would not work for some reason (

> >

> >

> > Mommie to Three Boys under three!!!

> > Ethan, Connor and Aiden

[Guest guest]

Hi Cheryl and ,

We too are in Southern California, SD, to be exact. We are getting

our DOC band next Thurs. Our insurance is not paying either, our

first appeal was denied yesterday. However, we will keep trying. I

have heard that the " cosmetic argument " is sometimes possible

to " beat " since there is some research supporting the medical

ramifications of uncorrected plagiocephaly. Anyway, good luck with

the band.

Kellie

> > Hey everyone!!! I just found this group via my aunt, she sent

me

> the

> > link. My son Aiden (3 months old) has Torticollis and plagio.

The

> > doctor and the physical therapist keeps telling us that it will

> take

> > time but it will go back to its original shape. Well it has

been

> > almost a month since we have been doing the stretchs and

> repositioning

> > and his head is just the same maybe even worse. Now what do we

> do? We

> > have an HMO which will not cover a band/helmet because it is

> considered

> > cosmetic. Any ideas? I tried to make a photo album with some

> pictures

> > but it would not work for some reason (

> >

> >

> > Mommie to Three Boys under three!!!

> > Ethan, Connor and Aiden

> >

> >

> >

> >

> >

> >

> > For more plagio info

[Guest guest]

Hi Cheryl and ,

We too are in Southern California, SD, to be exact. We are getting

our DOC band next Thurs. Our insurance is not paying either, our

first appeal was denied yesterday. However, we will keep trying. I

have heard that the " cosmetic argument " is sometimes possible

to " beat " since there is some research supporting the medical

ramifications of uncorrected plagiocephaly. Anyway, good luck with

the band.

Kellie

> > Hey everyone!!! I just found this group via my aunt, she sent

me

> the

> > link. My son Aiden (3 months old) has Torticollis and plagio.

The

> > doctor and the physical therapist keeps telling us that it will

> take

> > time but it will go back to its original shape. Well it has

been

> > almost a month since we have been doing the stretchs and

> repositioning

> > and his head is just the same maybe even worse. Now what do we

> do? We

> > have an HMO which will not cover a band/helmet because it is

> considered

> > cosmetic. Any ideas? I tried to make a photo album with some

> pictures

> > but it would not work for some reason (

> >

> >

> > Mommie to Three Boys under three!!!

> > Ethan, Connor and Aiden

> >

> >

> >

> >

> >

> >

> > For more plagio info

[Guest guest]

,

Welcome to the group! Liliana is NOT to old to be banded. It

sounds like she has pretty significant brachy by your description

and I'd ask your pediatrician for a helmet prescription and get her

banded ASAP. Where do you live? I'm sure someone lives closeby

that can recommend a place to you. Check out this link:

http://www.cranialtech.com/treatment/casef.html

It is a baby who was banded at 19.5 mos of age and he had excellent

results still. It is definitely not desirable to wait that long,

but I just wanted to show you that correction is possible at her

age. Don't give up!

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

> Hi.

> My daughter Liliana is 10 1/2 months old. The back of her head is

very

> flat all the way across. Her pediatrician says her head won't round

> out and that it's too late for banding. We tried repositioning at

4 to

> 6 months but it didn't work.

>

> She's not crawling yet but the pediatrician says this is not

related

> to plagio, but the fact that her head is larger than average for

her

> body.

>

> Around six months she had a CT scan and it ruled out

craniosynistosis

> and torticollis but the neuro did say the flatness was " fairly

> significant. "

>

> Upon recommendation from her pediatrician, I'm scheduling another

> appointment with a neurologist to make sure there's nothing

medically

> preventing her from crawling at this point.

>

> Right now I feel so terrible for letting my daughter's head go

flat. I

> tried repositioning, but I can't say I was aggressive with my

efforts.

> I didn't force tummy time because she cried inconsolably, to the

point

> of falling asleep, even when I was doing it for 5 minute

increments at

> a time.

>

> I am glad there are other babies out there with plagio. I am

worried

> that she will be made fun of in school. With baby #2, we will do

much

> more tummy time, but how do I explain to my daughter that I just

> didn't know enough when she was an infant? I heard " back to sleep,

> tummy to play " but didn't realize that tummy time is to prevent

> flattening as much as it is for developing upper body strength.

>

> Thanks for having a support group to help us out.

> ~

[Guest guest]

,

Welcome to the group! Liliana is NOT to old to be banded. It

sounds like she has pretty significant brachy by your description

and I'd ask your pediatrician for a helmet prescription and get her

banded ASAP. Where do you live? I'm sure someone lives closeby

that can recommend a place to you. Check out this link:

http://www.cranialtech.com/treatment/casef.html

It is a baby who was banded at 19.5 mos of age and he had excellent

results still. It is definitely not desirable to wait that long,

but I just wanted to show you that correction is possible at her

age. Don't give up!

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

> Hi.

> My daughter Liliana is 10 1/2 months old. The back of her head is

very

> flat all the way across. Her pediatrician says her head won't round

> out and that it's too late for banding. We tried repositioning at

4 to

> 6 months but it didn't work.

>

> She's not crawling yet but the pediatrician says this is not

related

> to plagio, but the fact that her head is larger than average for

her

> body.

>

> Around six months she had a CT scan and it ruled out

craniosynistosis

> and torticollis but the neuro did say the flatness was " fairly

> significant. "

>

> Upon recommendation from her pediatrician, I'm scheduling another

> appointment with a neurologist to make sure there's nothing

medically

> preventing her from crawling at this point.

>

> Right now I feel so terrible for letting my daughter's head go

flat. I

> tried repositioning, but I can't say I was aggressive with my

efforts.

> I didn't force tummy time because she cried inconsolably, to the

point

> of falling asleep, even when I was doing it for 5 minute

increments at

> a time.

>

> I am glad there are other babies out there with plagio. I am

worried

> that she will be made fun of in school. With baby #2, we will do

much

> more tummy time, but how do I explain to my daughter that I just

> didn't know enough when she was an infant? I heard " back to sleep,

> tummy to play " but didn't realize that tummy time is to prevent

> flattening as much as it is for developing upper body strength.

>

> Thanks for having a support group to help us out.

> ~

[Guest guest]

Hi ,

It's not too late for the helmet, don't let them tell you it is. Doctors have

little if any training in this area from what I've seen and heard. You have

plenty of time, my son began wearing his Star band helmet earlier about 7 months

but getting the helmet was delayed because the doctors kept telling us he'll be

fine and outgrow the flatness but I finally decided the doctors had no clue and

went to see an Orthodist myself and he confirmed my fears. My son will probably

wear it for about 6 months but I thank god I didn't listen to the doctors. He's

delayed in a few areas but with the helmet and physical therapy I know he will

catch and have began to see improvements already. We have friends that have

kids who didn't realize their kids had plagiocephaly until they were about 14

months and the helmet worked for their kids so don't give up, there are things

you can do. Sounds like your baby has brachycephaly, I would request a referral

to an Orthopedic Surgeon to have it diagnosed, print out info and pictures from

the web to prove your concerns and be aggressive in requesting they give you a

referral to an Orthodist who can fit the baby for a helmet, that's what I did.

We had to fight with our insurance company but in the end they paid the $3000

for the Star Band and referred us to physical therapy. Depending on where you

live there should be several local Orthodists you can see. Cranial Technologies

is in several states also.

It will take time and lots of effort on your part but it can be done and your

baby will be ok once the helmet does its magic!!!

Best of luck,

Lina mommy to little Jimmy

new to group

Hi.

My daughter Liliana is 10 1/2 months old. The back of her head is very

flat all the way across. Her pediatrician says her head won't round

out and that it's too late for banding. We tried repositioning at 4 to

6 months but it didn't work.

She's not crawling yet but the pediatrician says this is not related

to plagio, but the fact that her head is larger than average for her

body.

Around six months she had a CT scan and it ruled out craniosynistosis

and torticollis but the neuro did say the flatness was " fairly

significant. "

Upon recommendation from her pediatrician, I'm scheduling another

appointment with a neurologist to make sure there's nothing medically

preventing her from crawling at this point.

Right now I feel so terrible for letting my daughter's head go flat. I

tried repositioning, but I can't say I was aggressive with my efforts.

I didn't force tummy time because she cried inconsolably, to the point

of falling asleep, even when I was doing it for 5 minute increments at

a time.

I am glad there are other babies out there with plagio. I am worried

that she will be made fun of in school. With baby #2, we will do much

more tummy time, but how do I explain to my daughter that I just

didn't know enough when she was an infant? I heard " back to sleep,

tummy to play " but didn't realize that tummy time is to prevent

flattening as much as it is for developing upper body strength.

Thanks for having a support group to help us out.

~

For more plagio info

[Guest guest]

Hi ,

It's not too late for the helmet, don't let them tell you it is. Doctors have

little if any training in this area from what I've seen and heard. You have

plenty of time, my son began wearing his Star band helmet earlier about 7 months

but getting the helmet was delayed because the doctors kept telling us he'll be

fine and outgrow the flatness but I finally decided the doctors had no clue and

went to see an Orthodist myself and he confirmed my fears. My son will probably

wear it for about 6 months but I thank god I didn't listen to the doctors. He's

delayed in a few areas but with the helmet and physical therapy I know he will

catch and have began to see improvements already. We have friends that have

kids who didn't realize their kids had plagiocephaly until they were about 14

months and the helmet worked for their kids so don't give up, there are things

you can do. Sounds like your baby has brachycephaly, I would request a referral

to an Orthopedic Surgeon to have it diagnosed, print out info and pictures from

the web to prove your concerns and be aggressive in requesting they give you a

referral to an Orthodist who can fit the baby for a helmet, that's what I did.

We had to fight with our insurance company but in the end they paid the $3000

for the Star Band and referred us to physical therapy. Depending on where you

live there should be several local Orthodists you can see. Cranial Technologies

is in several states also.

It will take time and lots of effort on your part but it can be done and your

baby will be ok once the helmet does its magic!!!

Best of luck,

Lina mommy to little Jimmy

new to group

Hi.

My daughter Liliana is 10 1/2 months old. The back of her head is very

flat all the way across. Her pediatrician says her head won't round

out and that it's too late for banding. We tried repositioning at 4 to

6 months but it didn't work.

She's not crawling yet but the pediatrician says this is not related

to plagio, but the fact that her head is larger than average for her

body.

Around six months she had a CT scan and it ruled out craniosynistosis

and torticollis but the neuro did say the flatness was " fairly

significant. "

Upon recommendation from her pediatrician, I'm scheduling another

appointment with a neurologist to make sure there's nothing medically

preventing her from crawling at this point.

Right now I feel so terrible for letting my daughter's head go flat. I

tried repositioning, but I can't say I was aggressive with my efforts.

I didn't force tummy time because she cried inconsolably, to the point

of falling asleep, even when I was doing it for 5 minute increments at

a time.

I am glad there are other babies out there with plagio. I am worried

that she will be made fun of in school. With baby #2, we will do much

more tummy time, but how do I explain to my daughter that I just

didn't know enough when she was an infant? I heard " back to sleep,

tummy to play " but didn't realize that tummy time is to prevent

flattening as much as it is for developing upper body strength.

Thanks for having a support group to help us out.

~

For more plagio info

[Guest guest]

, Welcome! You are definatly not alone here! We all felt the

guilt in the begining, but how could you prevent something that you

didn't know anything about?! Don't feel like that!! My son is 9 1/2

months right now and has been in his helmet for 7 1/2 weeks now, and

we're already seeing a major difference, and 10 months is NOT too

old!! Most places will band up to a year, and some even longer than

that! You should check out Cranial Technologies website (the link

that sent you). They band older babies as well. We take my son

there for treatment to the Chicago clinic, we live in southern IN, so

it's a very long drive to get there and we stay over night, but let me

tell you it's been totally worth it!

Lacy

Waydon's mom 9 1/2 months

7 1/2 weeks DOCband

> Hi.

> My daughter Liliana is 10 1/2 months old. The back of her head is very

> flat all the way across. Her pediatrician says her head won't round

> out and that it's too late for banding. We tried repositioning at 4 to

> 6 months but it didn't work.

>

> She's not crawling yet but the pediatrician says this is not related

> to plagio, but the fact that her head is larger than average for her

> body.

>

> Around six months she had a CT scan and it ruled out craniosynistosis

> and torticollis but the neuro did say the flatness was " fairly

> significant. "

>

> Upon recommendation from her pediatrician, I'm scheduling another

> appointment with a neurologist to make sure there's nothing medically

> preventing her from crawling at this point.

>

> Right now I feel so terrible for letting my daughter's head go flat. I

> tried repositioning, but I can't say I was aggressive with my efforts.

> I didn't force tummy time because she cried inconsolably, to the point

> of falling asleep, even when I was doing it for 5 minute increments at

> a time.

>

> I am glad there are other babies out there with plagio. I am worried

> that she will be made fun of in school. With baby #2, we will do much

> more tummy time, but how do I explain to my daughter that I just

> didn't know enough when she was an infant? I heard " back to sleep,

> tummy to play " but didn't realize that tummy time is to prevent

> flattening as much as it is for developing upper body strength.

>

> Thanks for having a support group to help us out.

> ~

[Guest guest]

, Welcome! You are definatly not alone here! We all felt the

guilt in the begining, but how could you prevent something that you

didn't know anything about?! Don't feel like that!! My son is 9 1/2

months right now and has been in his helmet for 7 1/2 weeks now, and

we're already seeing a major difference, and 10 months is NOT too

old!! Most places will band up to a year, and some even longer than

that! You should check out Cranial Technologies website (the link

that sent you). They band older babies as well. We take my son

there for treatment to the Chicago clinic, we live in southern IN, so

it's a very long drive to get there and we stay over night, but let me

tell you it's been totally worth it!

Lacy

Waydon's mom 9 1/2 months

7 1/2 weeks DOCband

> Hi.

> My daughter Liliana is 10 1/2 months old. The back of her head is very

> flat all the way across. Her pediatrician says her head won't round

> out and that it's too late for banding. We tried repositioning at 4 to

> 6 months but it didn't work.

>

> She's not crawling yet but the pediatrician says this is not related

> to plagio, but the fact that her head is larger than average for her

> body.

>

> Around six months she had a CT scan and it ruled out craniosynistosis

> and torticollis but the neuro did say the flatness was " fairly

> significant. "

>

> Upon recommendation from her pediatrician, I'm scheduling another

> appointment with a neurologist to make sure there's nothing medically

> preventing her from crawling at this point.

>

> Right now I feel so terrible for letting my daughter's head go flat. I

> tried repositioning, but I can't say I was aggressive with my efforts.

> I didn't force tummy time because she cried inconsolably, to the point

> of falling asleep, even when I was doing it for 5 minute increments at

> a time.

>

> I am glad there are other babies out there with plagio. I am worried

> that she will be made fun of in school. With baby #2, we will do much

> more tummy time, but how do I explain to my daughter that I just

> didn't know enough when she was an infant? I heard " back to sleep,

> tummy to play " but didn't realize that tummy time is to prevent

> flattening as much as it is for developing upper body strength.

>

> Thanks for having a support group to help us out.

> ~