Need Advice

[Guest guest]

I think he should be ok. He will continue to improve.

I think helmet is work better for severe case.

--- harita313 <harita313@...> wrote:

> Hi,

> My son has plagiocephaly,we went for scanning 3

> times,without helmet he

> improved from 7.2 mm to 3.9 mm.But with 3.9 mm it is

> still visible.And

> now our insurance covers.Wondering what are your

> suggestions.

> we are in dilema

> Thanks,

> Harita

>

>

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[Guest guest]

3.9 is very mild. Unless there is something unusual about his head

shape I wouldn't think it would be noticable. Can you post some

pictures? Particularly a top view? It doesn't sound like a band is

needed, but every case is different.

-christine

sydney 2 yrs starband grad

>

> Hi,

> My son has plagiocephaly,we went for scanning 3 times,without helmet he

> improved from 7.2 mm to 3.9 mm.But with 3.9 mm it is still visible.And

> now our insurance covers.Wondering what are your suggestions.

> we are in dilema

> Thanks,

> Harita

>

[Guest guest]

I'd have to agree with . Also, I'm not sure if they can

even make a cast or a scan with only 3.9mm of assymetry. Our son

graduated with 3mm and we were told that our son didn't need another

band (even though I could still see the assymetry). Post pictures

and we'll let you know our opinions.

lisa

> >

> > Hi,

> > My son has plagiocephaly,we went for scanning 3 times,without

helmet he

> > improved from 7.2 mm to 3.9 mm.But with 3.9 mm it is still

visible.And

> > now our insurance covers.Wondering what are your suggestions.

> > we are in dilema

> > Thanks,

> > Harita

> >

>

[Guest guest]

I think you did a great job of repositioning to get that much

natural improvement without a helmet. I was told that the " normal "

range is between 2-4mm, so I think it's fabulous that you could very

likely avoid banding all together. Just to give you something to

compare, my son measured 15mm assymetry at 16 months old. That was

with some natural improvement, so it was obviously much worse as a

baby. So you are very lucky. This is just my opinion, but based just

on the measurements, I would not band. But if you want to post a

photo, we'd love to see it.

Good luck!

Jake-17.5m (tort resolved/rt plagio/DocBand 2/11/08)

Jordan-4

>

> Hi,

> My son has plagiocephaly,we went for scanning 3 times,without

helmet he

> improved from 7.2 mm to 3.9 mm.But with 3.9 mm it is still

visible.And

> now our insurance covers.Wondering what are your suggestions.

> we are in dilema

> Thanks,

> Harita

>

[Guest guest]

You can get partial guardianship also...over certain areas and not others. Pam :)It's Tax Time! Get tips, forms and advice on AOL Money Finance.

[Guest guest]

Well, we considered doing this but we have not done it so far. He is 19 yo now and things are working out ok so far this way.

The only thing I was worried about was the school IEP stuff when he turned 18. But my ds will have nothing to do with any of them and won't attend a meeting. So that kind of helped in one sense that I still have to be there and be a part of it.

RoxannaAutism Happens

( ) Need advice

My son will be 18 in April. We've heard it is best to go to a lawyer and make ourselves his legal guardian. Is that what you parents here did when your child turned 18? Does this mean they can't vote? Cuz he wants to vote real bad in November, and he wants to drive one day, we are still teaching him that. Will he have to give up every thing if we do this? pj

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[Guest guest]

In a message dated 3/4/2008 12:31:56 PM Eastern Standard Time, kbtoni@... writes:

hopefully he can at least let us know if they are passing or failing. ..

as far as I know in this case, all grades and everything else about school will be addressed to your child. You are no longer privy to this information without their approval, unless you have guardianship or partial guardianship over educational issues. Pam :)It's Tax Time! Get tips, forms and advice on AOL Money Finance.

[Guest guest]

The thing that worries me the most is managing Ian's medical needs. I'm worried

that the

HIPPA privacy restrictions will prevent me from having access to his medical

information.

Sue C.

>

> Well, we considered doing this but we have not done it so far. He is 19 yo

now and

things are working out ok so far this way.

>

> The only thing I was worried about was the school IEP stuff when he turned 18.

But my

ds will have nothing to do with any of them and won't attend a meeting. So that

kind of

helped in one sense that I still have to be there and be a part of it.

>

> Roxanna

> Autism Happens

> ( ) Need advice

>

>

>

> My son will be 18 in April. We've heard it is best to go to a lawyer and

make ourselves

his legal guardian. Is that what you parents here did when your child turned

18? Does

this mean they can't vote? Cuz he wants to vote real bad in November, and he

wants to

drive one day, we are still teaching him that. Will he have to give up every

thing if we do

this? pj

>

>

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

-----------

> Looking for last minute shopping deals? Find them fast with Search.

>

[Guest guest]

and school/college grades and how they are performing... even though WE will be paying for college with help from Vocational Rehab..it's scary.. that's one reason we already went and talked to the disabilty director from the college we plan on sending them to.. hopefully he can at least let us know if they are passing or failing. .. I don't know, haven't had to deal with this yet... my kids have already refused meds and going to any pdocs or tdocs..they are 19 now. Toni

( ) Need advice> > > > My son will be 18 in April. We've heard it is best to go to a lawyer and make ourselves his legal guardian. Is that what you parents here did when your child turned 18? Does this mean they can't vote? Cuz he wants to vote real bad in November, and he wants to drive one day, we are still teaching him that. Will he have to give up every thing if we do this? pj> > > ---------------------------------------------------------------------> Looking for last minute shopping deals? Find them fast with Search.>

[Guest guest]

http://www.copaa.net/ <--- you can find a list of sped advocates on this website.

RoxannaAutism Happens

Re: ( ) Need advice

Any suggestion on how to find a spec ed lawyer or even one that knows what an IEP or IQ test is?I am currently fighting the state of Tennessee as they seem to change their criteria for diagnosis as they see fit. We have been, I feel like, unfairly denied services. Their criteria for services for MR is an IQ test of 70 or below before age 18. We have three of those. We also have one that the psychologist specifically labeled as INVALID because of prompting and that's what they used the first time to deny. Never mind the other two below 70. I appealed and they denied again. This time misquoting testing psychologist who got a 71 and said was not sure if MR, should be retested in a year. (which was never done due to a state law). I am asking for a WRITTEN guideline from them on how they determine who is eligible for services. I was told by an intake co-ordinator it is ONE test below 70 before 18, which we have. I am just so frustrated...I cannot find a lawyer to take the case. The two I spoke with about the case also do work for DMRS and can't touch it. On the other hand, the state has all the money, experts, lawyers and resources at hand paid for by guess who!They cannot retest as he is 23, so over the 18 yr of age. But I need someone to help me as an advocate. I am tired of taking on the world.Sue in TN> specializes in guardianship and special needs trusts (more expensive). Pam > > > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)>

[Guest guest]

> I have 2 boys w/ Asperger's and they take the digestive enzymes. My

oldest son, age 14, has eosinophyllic gastroenteritis due to a casein

allergy and also malabsorption syndrome. The digestive enzymes have

really helped him gain wt. and allowed his gut to heal. He's been

doing fairly well.... although lately he has had some real emotional

outbursts, anger eruptions and arguing over the littlest things.

Might be other food issues, or yeast overgrowth, or a few other things.

>>At first I attributed it to hormones and puberty, but now I wonder.

His younger brother is allergic to everything under the sun and is

not gaining wt., he stims constantly has moments of silly behavior.

What are the stims?

Silly behavior is usually yeast, altho can be phenols or other foods also

http://www.danasview.net/yeast.htm

http://www.danasview.net/phenol.htm

>>I'm noticing some ADD type behavior,

Most ADHD kids have problems with phenols and milk.

>>But I'm thinking we may have yeast issues that need to be addressed.

Definitely a possibility.

>>I've heard GSE is good for yeast and so is biotin. I would like

your opinion on what works best

At my house, biotin was best to help address one of the underlying

causes of the overgrowth. I used GSE for the flares.

Dana

[Guest guest]

Hi Dana,

You had asked what my son's stims were. Well, he takes an object... any object

and twirls it in front of his eyes and makes this weird noise with his mouth.

Almost like a motor running sound. Hope I'm making sense here. He does it all

the time and sometimes seems completely unaware that he is doing it out in

public in front of others. Usually if I call his name, he snaps out of it. But

he does this as often as he an. The object can be a something as insignificant

as a spoon or the lid off of a soda bottle.

My oldest son w/ AS also stims, but he just kind of twists his hands and looks

like he's in a trance. He says this is the only way he can use his imagination.

He will go off to do this by himself as he doesn't like people to watch him.

For awhile, even though I'm not in to ghosts or that kind of thing... I was

really starting to wonder b/c all the pictures in my living room were turned

around. I kept turning them forward and the next day they would all be turned

backwards again. Finally my son told me he didn't like for ANYONE to see him

when he stimmed. LOL! And that included the people in the pictures.

All the boys have had trouble w/ eczema as babies. My 10 y/o AS son had it from

the first day he was born. He is highly allergic to all nuts/legumes,sesame

seeds, and eggs. The twin to my 14 y/o AS son can't eat apples or carrots or

her lips swell up. She always seemed neurotypical to me until she hit puberty.

Now we are experiencing all kinds of sensory issues/mood swings. She also has

spells like absence seizures but EEG's have more or less ruled those out. She

loses her balance frequently and has 'brain pauses' where she loses control of

her hands and drops whatever she is holding.It just happens for second then it's

over. She doesn't have that as often as she used to. She also has lost her

balance and fallen down when going from a dark room to a well lit one. The

neurologist I took her to ran the EEG tests and then proceeded to tell me she

was doing it for attention. I've witnessed these episodes and they scare her

silly so I know she doesn't do this on purpose. I've just decided to get all

the kids on enzymes/probiotics, etc. But I sure would like any additional

insight you might have re: some of this stuff. Thank you! ~Penny

[Guest guest]

Penny - Keep looking!

Does any one else remember a show on TV about two twins. He was mild, think

diagnosed CP. Made gains with " traditional " therapies. The girl, didn't.

The mother made a connection how in the morning she was good, and during the

day just went down hill. She was also diagnoses CP but wasn't responding to

therapies and really going down hill.

Some doctor somewhere made a discovering. Gosh, guys, any one remember

seeing this? For the life of me I don't remember what it was, but the

daughter made a full recovery. So they tested the boy, he also had a milder

form of whatever it was, but they both needed " something " . Very rare. For

some reason your story tripped this in my memory, obviously not the best,

but keep searching for answers.

Tammy

re: need advice

Hi Dana,

You had asked what my son's stims were. Well, he takes an object... any

object and twirls it in front of his eyes and makes this weird noise with

his mouth. Almost like a motor running sound. Hope I'm making sense here. He

does it all the time and sometimes seems completely unaware that he is doing

it out in public in front of others. Usually if I call his name, he snaps

out of it. But he does this as often as he an. The object can be a something

as insignificant as a spoon or the lid off of a soda bottle.

My oldest son w/ AS also stims, but he just kind of twists his hands and

looks like he's in a trance. He says this is the only way he can use his

imagination. He will go off to do this by himself as he doesn't like people

to watch him. For awhile, even though I'm not in to ghosts or that kind of

thing... I was really starting to wonder b/c all the pictures in my living

room were turned around. I kept turning them forward and the next day they

would all be turned backwards again. Finally my son told me he didn't like

for ANYONE to see him when he stimmed. LOL! And that included the people in

the pictures.

All the boys have had trouble w/ eczema as babies. My 10 y/o AS son had it

from the first day he was born. He is highly allergic to all

nuts/legumes,sesame seeds, and eggs. The twin to my 14 y/o AS son can't eat

apples or carrots or her lips swell up. She always seemed neurotypical to me

until she hit puberty. Now we are experiencing all kinds of sensory

issues/mood swings. She also has spells like absence seizures but EEG's have

more or less ruled those out. She loses her balance frequently and has

'brain pauses' where she loses control of her hands and drops whatever she

is holding.It just happens for second then it's over. She doesn't have that

as often as she used to. She also has lost her balance and fallen down when

going from a dark room to a well lit one. The neurologist I took her to ran

the EEG tests and then proceeded to tell me she was doing it for attention.

I've witnessed these episodes and they scare her silly so I know she doesn't

do this on purpose. I've just decided to getall the kids on

enzymes/probiotics, etc. But I sure would like any additional insight you

might have re: some of this stuff. Thank you! ~Penny

[Guest guest]

Penny,

Boy did your post ring a bell with out situation with our

16 yr old dd(Pdd-nos) We know she has gut damage. Has

elevated IgG gliadin antibodies, but not celiac. Iron anemia.

After 3 years on Diflucan and Lamisil. We thought we had

her yeast issue beat only to discover she has been B12 deficient

too. Was always low but finally went below the bottom of thee

scale, so would be taken seriously. Anyhow, Her behavior was

exactly what you described. Irritable, cranky, low tollerance level,

meltdowns at school, confused, etc.

We are currently seeking a Dr.'s advise to get a scope done to

see her gut. I have her on pro-biotic and enzymes ready to go,

but I really want to see what her gut looks like before I start.

Were doing b12 shots and it has been a remarkable difference(I mean

all those symptoms are GONE>>>>.

When testing for b12, its not commonly known, but you should

fast for 12 hours prior to blood draw. Good luck...

Lynn

>

> Hi,

> I have 2 boys w/ Asperger's and they take the digestive enzymes.

My oldest son, age 14, has eosinophyllic gastroenteritis due to a

casein allergy and also malabsorption syndrome. The digestive

enzymes have really helped him gain wt. and allowed his gut to heal.

He's been doing fairly well.... although lately he has had some real

emotional outbursts, anger eruptions and arguing over the littlest

things. At first I attributed it to hormones and puberty, but now I

wonder. His younger brother is allergic to everything under the sun

and is not gaining wt., he stims constantly has moments of silly

behavior. He is on the enzymes too, but I'm wondering about a yeast

problem and would like to know your thoughts. I also have another

son that I don't believe has AS, but I'm noticing some ADD type

behavior, he's behind in his learning (we homeschool)....just has

complete meltdowns when he has to learn a new concept. Same thing as

his brother.... very silly behavior at times and emotional outbursts

from time to time. Where the other 2 boys have difficulty gaining

wt., this son is over weight, has trouble staying on task, paying

attention and silly behavior. We did the GFCF diet for awhile, but w/

8 kids (3 being teens) it was really hard to do plus the cost was

horrific. We've found the enzymes to really help and in fact, when

we did just the diet, my oldest son's GI problems continued. They

weren't alleviated until we started on the enzymes. Now I would like

to know where to go from here w/ all 3 boys. We don't have a DAN!

doctor around here and I've been totally amazed at how the allergist,

the GI specialist, nutritionist, etc. can't seem to see a correlation

w/ spectrum issues and their specialties. We do have acidophilus,

fish oil.... that we use. But I'm thinking we may have yeast issues

that need to be addressed. Also I would like to help my younger son

w/ his attention problems and staying on task. I've heard GSE is

good for yeast and so is biotin. I would like your opinion on what

works best and what would be a good protocol to use w/ these boys. I

recently bought 'Healing the New Childhood Epidemics' by

Bock. There are so many things that sound great to try.... but which

ones are okay to use w/o a doctor's input? Sorry for the length of

this. Thanks for your help. ~Penny

>

>

>

[Guest guest]

There are some long term issues that are associated with not banding. These include the possibility of TMJ, vision and hearing issues. Also, and this is only my opinion, if my child were to notice the asymmetry down the road when they were older, I would want them to know that I went down every avenue possible to have it fixed.

At 6 months of age it is rare that the issue will correct itself. Repositioning doesn't seem to work with babies of this age because they are more resistant to the changes in position that younger babies. In other words, they have more of a mind of their own. Ultimately, the decision is yours. It is unlikely that he will have long term affects if the asymmetry is as little as you say. Have they given you any measurements?

Hope some of this helps!

Sam

Mom of Nikki-Left Tort, Severe Plagio 8 months

Eliana- 4 y/o --no tort or plagio.

Need Advice

Our son is 6 months old and it has been recommended that he go into aband. His asymmetry is somewhat noticeable, but has improved greatlyin the last month as he has been on his stomach for play and sleep. What are the long term affects of not banding and has anybody decidedto wait to see if it has gotten better and it didn't or did?

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

In my opinoin, it really depends how servere the

asymmetry is. If it is less than 5 nm, it probably

will get resolved by spending more time on tummy.

--- j_hollmeyer <john@...> wrote:

> Our son is 6 months old and it has been recommended

> that he go into a

> band. His asymmetry is somewhat noticeable, but has

> improved greatly

> in the last month as he has been on his stomach for

> play and sleep.

> What are the long term affects of not banding and

> has anybody decided

> to wait to see if it has gotten better and it didn't

> or did?

>

>

________________________________________________________________________________\

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[Guest guest]

Sorry, I meant 5mm.

--- Qin Wang <jeanwangus@...> wrote:

> In my opinoin, it really depends how servere the

> asymmetry is. If it is less than 5 nm, it probably

> will get resolved by spending more time on tummy.

>

>

> --- j_hollmeyer <john@...> wrote:

>

> > Our son is 6 months old and it has been

> recommended

> > that he go into a

> > band. His asymmetry is somewhat noticeable, but

> has

> > improved greatly

> > in the last month as he has been on his stomach

> for

> > play and sleep.

> > What are the long term affects of not banding and

> > has anybody decided

> > to wait to see if it has gotten better and it

> didn't

> > or did?

> >

> >

>

>

>

>

>

________________________________________________________________________________\

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> Never miss a thing. Make your home page.

> http://www./r/hs

>

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[Guest guest]

Thanks.

Are you a parent or a doctor, has your child been in a band.

Sent from my Verizon Wireless BlackBerry

Re: Need Advice

In my opinoin, it really depends how servere the

asymmetry is. If it is less than 5 nm, it probably

will get resolved by spending more time on tummy.

--- j_hollmeyer <john@ferncroftcapit <mailto:john%40ferncroftcapital.com>

al.com> wrote:

> Our son is 6 months old and it has been recommended

> that he go into a

> band. His asymmetry is somewhat noticeable, but has

> improved greatly

> in the last month as he has been on his stomach for

> play and sleep.

> What are the long term affects of not banding and

> has anybody decided

> to wait to see if it has gotten better and it didn't

> or did?

>

>

__________________________________________________________

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[Guest guest]

We waited to see if it would get better on its own but it didn't. My

son also had torticollis which made things more difficult. We banded

him at 17 months old. He has high moderate asymmetry, it is most

noticeable in his forehead bossing and ear alignment. Did you get an

evaluation and did they measure his asymmetry? My son measured 15mm of

asymmetry for both cranial vault (top of the head) and skull base

(ears) at 16 months old, so I imagine he was worse a year ago. There

was very little natural correction after he hit 6 months old.

Jake-18m (tort resolved/rt plagio/DocBand 2/11/08)

Jordan-4

>

> Our son is 6 months old and it has been recommended that he go into a

> band. His asymmetry is somewhat noticeable, but has improved greatly

> in the last month as he has been on his stomach for play and sleep.

> What are the long term affects of not banding and has anybody decided

> to wait to see if it has gotten better and it didn't or did?

>

[Guest guest]

> Hi Dana,

> You had asked what my son's stims were. Well, he takes an object...

any object and twirls it in front of his eyes and makes this weird

noise with his mouth.

This was a visual for my son. I wrote here what he required to

eliminate those

http://www.danasview.net/issues.htm

> All the boys have had trouble w/ eczema as babies.

Commonly caused by food intolerances.

>>sensory issues/mood swings. She also has spells like absence

seizures but EEG's have more or less ruled those out. She loses her

balance frequently and has 'brain pauses' where she loses control of

her hands and drops whatever she is holding.

Try increasing her yeast protocol.

http://www.danasview.net/yeast.htm

Dana

[Guest guest]

6 mo old is a really good time to band. the thing about tummy time is

that the flat spot will likely get rounder, but the head won't become

more symmetric. That is because the head will tend to grow evenly, so

the more prominent side will still be more prominent. some people use

aggressive repositioning, but this works best with younger babies.

with repo you put gentle pressure on the prominent side by resting the

baby on that side to sleep, nap etc. So the head will grow less in

that area and the growth will go to the flat area. The band does this

for you by holding growth in the prominent area, and leaving lots of

room to encourage growth in the flat area. this is what creates a more

symmetric head.

Our doctor (cranial facial plastic surgeon) recommends banding at 10

mm of asymmetry or more. Many parents band at lower numbers, but if

he's 10mm or more I would definitely band now.

I know it is a hard decision, but banding is much easier than you

anticipate.

-christine

sydney 2 yrs starband grad

>

> Our son is 6 months old and it has been recommended that he go into a

> band. His asymmetry is somewhat noticeable, but has improved greatly

> in the last month as he has been on his stomach for play and sleep.

> What are the long term affects of not banding and has anybody decided

> to wait to see if it has gotten better and it didn't or did?

>

[Guest guest]

sorry, more stuff to say...

it doesn't always get better. there is an olderplag group on

where many parents are still dealing with plagio in older kids (too

old for banding). Also there are posts to this board regularly from

parents that found out about banding too late, or whose doctors said

" it will improve on its own " only to find out later that is not the

case. Some babies do improve without treatment, but many don't.

-christine

>

> Our son is 6 months old and it has been recommended that he go into a

> band. His asymmetry is somewhat noticeable, but has improved greatly

> in the last month as he has been on his stomach for play and sleep.

> What are the long term affects of not banding and has anybody decided

> to wait to see if it has gotten better and it didn't or did?

>

[Guest guest]

There is an older plagio board here on - they are all parents who did not band. I'm sure they can help you too!

This is the question to ask yourself - If your childs headshape stayed the same with no more correction would you, and your shild, be happy? If the answer is yes then you know your answer. BUt if you are hopeing that there will be more correction achieved - then at 6 mo. old you won't see much more improvment with just repoing and you should consult with a band provider. Get an evauation to see just what the numbers are - CT does them for free - at least then you can have a starting point

[Guest guest]

My sons pedi referred us out to a plastic surgeon. Who in turn referred us to Hanger. Is there another pedi in the same office you can see for a second opinion? Maybe your PT can suggest someone you could get a second opinion from. Or you could possible call the children's hospital in your area and see what information that might be able to give you.

Need advice

My sons doctor keeps telling me that there is nothing wrong with his head shape, and that it will round out....Im very concerned... when I look in the mirror I can see one of his cheeks is much fuller than the other. His PT also said that his ears are not symmetrical. Since my pedi is not helping me what other options do I have? I dont even know where to start....can anyone offer advice??

Never miss a thing. Make your homepage.

[Guest guest]

Im in NY...Long Island to be exact. Maybe I will call a banding

location for an evaluation. TY!

>

> You could go for an evaluation at a banding location for their

opinion. Or maybe another dr for a second opinion. Where are you

located? Maybe we have someone in your area that has a doctor that

is plagio knowledgable. My dr thought my daughter had plagio but was

not real familiar with it. So he sent us to a pediatric cranio

plastic surgeon for an opinion. I hope this helps.

>

> Angie

> Need advice

>

>

> My sons doctor keeps telling me that there is nothing wrong with

his

> head shape, and that it will round out....Im very

concerned...when I

> look in the mirror I can see one of his cheeks is much fuller

than the

> other. His PT also said that his ears are not symmetrical. Since

my

> pedi is not helping me what other options do I have? I dont even

know

> where to start....can anyone offer advice??

>