newbie

[Guest guest]

Hi!

Thank you so much for replying, I about cried when I

saw all the support I've gotten already. My son has

the same thing, (flat in the back) and his head is

also very wide! I think a lot of the problem is that

the first month of his life I had to do a lot of

traveling because my Grandpa had brain surgery in

Albuquerque and they accidentally cut a blood vessel

and he had a brain bleed and was paralyzed and

everything went downhill from there. I went down to

say goodbye to him in the hospital and came back home

to Denver and then he passed away that weekend so I

had to drive all the way back down to Albuquerque

again for his funeral. So spent about 40 hours

one week in the carseat when I was driving. I wish I

would have known about the boppy noggin nest then, I'm

sure it would have helped a little. I also just got

that mattress thing that you can use to position the

baby that is made out of that memory foam like stuff.

I hope I can keep it from getting any worse.

We live in Denver, Colorado. Well, actually Golden,

CO which is about 15 minutes from Denver. My husband

is graduating from the Colorado School of Mines in

December so we might be moving to Dallas, New Mexico

or Arizona. I am a stay at home mom of two. A 3 year

old daughter, Whitney, and 3 month old son, .

Thank you so much to all who replied, I am so

amazed at the kindness and support moms have for

eachother. It gives me so much hope! I'm looking

forward to keeping in touch and learning more. =)

--- christineashok <christineashok@...> wrote:

> Hi ,

> welcome to the group. It is great that you found out

> about plagio

> while your son is so young. you can try

> repositioning (repo) and

> investigate helmets if needed. look in the files

> section for tips on

> repo-ing your little one. he's young enough that you

> could still have

> a lot of success in a short time (his head should

> still be growing

> quickly). my daughter loved the bouncy seat and I

> had no idea it was

> bad for her.

>

> have you heard of the bumbo seat? you can find it at

> babies-r-us or

> target. it supports your baby and allows him to sit

> before he can do

> it on his own. if his not ready for it yet, he

> should be soon. that,

> tummy time, exersaucer etc are good ways to keep him

> off his head

> (exersaucer might be better around 4 mo old).

>

> DOCband, STARband and Hanger bands are the most

> common types of

> " helmets " . they more or less look like helmets, but

> are open on top

> and they have a side opening that allows you to pry

> them open when you

> put them on/off the baby's head. there are other

> brands too. basically

> they fit close to the head where it is already more

> prominent, and

> leave a room where the head needs to grow so that it

> naturally fill in

> the parts where there is space. my daughter had

> brachycephaly (flat in

> back) and i didn't realize that her head had

> actually gotten much

> wider than normal. after her starband her head looks

> great.

>

> I'm sure you'll find lots of good info here and feel

> free to ask any

> question.

> -christine

> mom to sydney/ 10 mo/ starband grad 10-06

>

>

> >

> > Hi!

> > I was so excited to find this site! I have a 3

> month old son and I

> > swear, every day the back of his head looks

> flatter! When he was born

> > he would only sleep if he was in his bouncy chair

> with the vibrator on

> > and now his head is sloped at the same angle as

> the bouncy chair and

> > I'm totally freaking out. I feel like a failure of

> a mom and it's so

> > embarassing to take him out to church or wherever

> because it's pretty

> > obvious that his head is flat. I don't know what

> to do! If I take him

> > to the doctor I worry that I'll get in trouble for

> neglect or

> > something because I don't hold him alllllll night

> long, too. What is

> > this DOCband? It seems to work well from the

> pictures (thank you to

> > all who posted them, it really opened my eyes!),

> is it different from

> > a helmet? I have no idea what to do. Please help!

> >

> >

> >

>

>

>

>

________________________________________________________________________________\

____

Music Unlimited

Access over 1 million songs.

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[Guest guest]

---

Hi ,

The others have given you some great advice I just wanted to chim in

here and say Hello and Welcome to our group. You are not a bad mommy

and you are not going to get into any trouble for this. My dd was my

3rd child and I never knew anything about this before her. You are

taking the right steps to help your child and any questions that you

may have we will try to help we have all been in the same boat.

Good Luck,

Tina Mama to Jenna

In Plagiocephaly , " nataliebrimhall "

<nataliebrimhall@...> wrote:

>

> Hi!

> I was so excited to find this site! I have a 3 month old son and

I

> swear, every day the back of his head looks flatter! When he was

born

> he would only sleep if he was in his bouncy chair with the vibrator

on

> and now his head is sloped at the same angle as the bouncy chair

and

> I'm totally freaking out. I feel like a failure of a mom and it's

so

> embarassing to take him out to church or wherever because it's

pretty

> obvious that his head is flat. I don't know what to do! If I take

him

> to the doctor I worry that I'll get in trouble for neglect or

> something because I don't hold him alllllll night long, too. What

is

> this DOCband? It seems to work well from the pictures (thank you to

> all who posted them, it really opened my eyes!), is it different

from

> a helmet? I have no idea what to do. Please help!

>

>

>

[Guest guest]

Hi ! Welcome to the group! I'm quite new to this group too. I'm Suzi from SE QLD, Australia. I have two girls aged 8 and 6. It's my 6 years old named was diagosed with Torticollis and Plagio when she was two months old. She seen a Physiotherapist for therapy session on a regular basis and I had to change her sleeping and communication positions to help move her neck fully. As for Plagio I seen a Crammofacial Surgeon twice for consultation and xrays. He recommend for her to a helmet but he never explain how they worked or how much they cost. Because was still seeing the therapist I asked her about them. She said what they looked like but didn't recommend for her to wear one because of SIDS and they're were 100% affective back then. Because was left not wearing one her head did even out.

Consider Blake is now 4 years old I'm not sure if the Aussie doctors will do anything. You are doing the right thing of keeping him sleeping on the opposite side. Just curiousity, what's Blake's milestones like? Are they normal and update to date? For six years I really was left in the dark wondering what her medical future would be like. But after exploring the net for further info I am starting to wonder if there is side affects from this. She been diagnosed with Speech Language Impairment last year.

Here's a couple of websites that could interest you to read up on. It's all about plagio and abnormal head shapes. I wish I knew this info six years ago. http://www.pedisurg.com/PtEduc/Abnormal_Head_Shape.htm and http://www.plagiocephaly.org

Good luck with your Crammio appointment in March 2007. Let us know how it will go.

Suzi from SE QLD, Australia

married mum to (8) and (6)

Hi Welcome to the group!!

Here is a link, don't know if you have it yet but its filled with lots of infohttp://www.cranialtech.com/medicalinfo/identifyplagio.html I have tried repostioning since he was 2m but, it is not helping ,its getting worse. So I need to start looking at other options. Let me know if I can help you with anything. We are all here to help. Best of Luck!

Ingrid/Bradley 4m/ Moncks Corner,SC

>> Hi, I just wanted to introduce myself and tell you about my son. Were > from australia. My son Blake is a plagio baby. He has flattening on > the side on head (right side). Right left side of the back of his > head and bossing on the front right side of his forehead.> > I have taken him to 2 family drs and a ped here in Australia. (I'm > orginally from the US. So a bit confused on how things work here) > They have all told me not to worry about his head shape it will > straigthen out on it's own. I have made a appointment for a cranio > specailist for the 6th of march. So hopefully I will get the > ansewers I want from there. All the drs I have spoken to told me to > let him sleep any way he wants and not do ANYTHING. I have kept him > off that side of his head. It hasn't gotten worse. I actually think > it looks a little better. > > I find that drs here don't want to use a helment, and I have a friend > in New Zealand, her sons head was quite bad and they told her the > same. His turned out great without any treatment. Just confused on > why in the US everyone seems to get a helment to straighten out even > of the most minor cases and here they tell you not to worry. That's > why I'm worried. I'm confused on whos right and wrong. Just want to > do the right thing.> > Sorry it's so long, just hoping maybe someone can help me with what > to do?> I have looked at some of your pictures in the (photos) find some look > like Blakes and some don't look quite so bad. No one tends to look > bad to me, does that make sense? like you don't pay too much > attention to someone elses, but you worry about your own childs head > shape? Being a mom is hard. lol to say the least.> > Ok, thanks for reading and any help.> mommy to nathan Tyler 8/2/00 and Blake 9/20/02>

[Guest guest]

I know you've received a lot of responses, but I just wanted to reassure you, as I'm sure many others have, it's not a neglect thing, and you won't get into trouble. Sometimes as parents, we have to do whatever it takes to get our babies to sleep, even if that means that we let them hang out in the bouncy. There is so little info out there about plagio and no one forwarns you what can happen. You know what they say, hindsight is 20/20. You can't change the fact that it happened, but you can do what you need to in order to fix it, and by researching it and talking to other parents with plagio babies, you are off to a really good start. I would encourage you to bring it to your peds attention. Most of us have had to really push our doctors to take any action to correct our little ones heads, but in the end it will be soooo worth it. Use us as your sounding board, and a place to get answers when you need them. That's

why we are all here! Candace, AZ mommy to Tiernan, 6 mos tort, plagionataliebrimhall <nataliebrimhall@...> wrote: Hi! I was so excited to find this site! I have a 3 month old son and I swear, every day the back of his head looks flatter! When he was born he would only sleep if he was in his bouncy chair with the vibrator on and now his head is sloped at the same angle as the bouncy chair and I'm totally freaking out. I feel like a failure of

a mom and it's so embarassing to take him out to church or wherever because it's pretty obvious that his head is flat. I don't know what to do! If I take him to the doctor I worry that I'll get in trouble for neglect or something because I don't hold him alllllll night long, too. What is this DOCband? It seems to work well from the pictures (thank you to all who posted them, it really opened my eyes!), is it different from a helmet? I have no idea what to do. Please help!

Check out the all-new beta - Fire up a more powerful email and get things done faster.

[Guest guest]

I was wondering if the procedure was covered by your medical insurance

or are you out of pocket? I know that's a personal question and

understand if you don't feel comfortable responding.

Best wishes

http://whitterer-autism.blogspot.com

>

> I am new to this group, I have a 5 year old son that is autisc. My

> problem is I live in New Mexico where the doctors aren't alot of help.

> I was able to get him to a doctor in Sante Fe that is a DAN doctor. He

> tested him for mercury poising and put him on the chelatin therapy. He

> has been on it for about 3 months now. He has approved alot in his

> basic skills in school, writing and so forth but he still doesn't say a

> word and won't potty train. I know that there should be more I can do

> to help him but I read all the different things on the internet and one

> will be different than the one before. Any help from ya'll would be so

> much appreciated. I just know he is on the verge and just needs that

> last little push to get him the right direction.

>

>

[Guest guest]

What is your chelation protocol?

>

> I am new to this group, I have a 5 year old son that is autisc. My

> problem is I live in New Mexico where the doctors aren't alot of

help.

> I was able to get him to a doctor in Sante Fe that is a DAN doctor.

He

> tested him for mercury poising and put him on the chelatin therapy.

He

> has been on it for about 3 months now. He has approved alot in his

> basic skills in school, writing and so forth but he still doesn't

say a

> word and won't potty train. I know that there should be more I can

do

> to help him but I read all the different things on the internet and

one

> will be different than the one before. Any help from ya'll would be

so

> much appreciated. I just know he is on the verge and just needs

that

> last little push to get him the right direction.

>

>

[Guest guest]

I am paying out of my pocket, but when it comes to Dallas I make it work

[ ] Re: newbie

I was wondering if the procedure was covered by your medical insurance

or are you out of pocket? I know that's a personal question and

understand if you don't feel comfortable responding.

Best wishes

http://whitterer-autism.blogspot.com

>

> I am new to this group, I have a 5 year old son that is autisc. My

> problem is I live in New Mexico where the doctors aren't alot of help.

> I was able to get him to a doctor in Sante Fe that is a DAN doctor. He

> tested him for mercury poising and put him on the chelatin therapy. He

> has been on it for about 3 months now. He has approved alot in his

> basic skills in school, writing and so forth but he still doesn't say a

> word and won't potty train. I know that there should be more I can do

> to help him but I read all the different things on the internet and one

> will be different than the one before. Any help from ya'll would be so

> much appreciated. I just know he is on the verge and just needs that

> last little push to get him the right direction.

>

>

[Guest guest]

Hi ,

Welcome to the list. What test did the doc use to determine mercury toxicity?

Many docs use a DMSA challenge test which is dangerous and not very useful.

Which chelator, route (oral, TD, other?), dose, and dosing schedule are you

using? Is he on any supplements? probiotics? How's his diet?

S S

<p>I am new to this group, I have a 5 year old son that is autisc.

My <br>

problem is I live in New Mexico where the doctors aren't alot of help.<br>

I was able to get him to a doctor in Sante Fe that is a DAN doctor. He <br>

tested him for mercury poising and put him on the chelatin therapy. He <br>

has been on it for about 3 months now. He has approved alot in his <br>

basic skills in school, writing and so forth but he still doesn't say a <br>

word and won't potty train. I know that there should be more I can do <br>

to help him but I read all the different things on the internet and one <br>

will be different than the one before. Any help from ya'll would be so <br>

much appreciated. I just know he is on the verge and just needs that <br>

last little push to get him the right direction. <br>

<br>

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

[Guest guest]

Welcome! He is ADORABLE!!!!!

Glad it is going so well for you!!!!

Jen and LuliLeft Tort - Right Plagio - Hanger Band Grad - CATallulah Jayne -AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Hello and welcome to the group. I am glad to hear how well your son is doing. Please keep us posted.

Angie and jenna(STAR grad)

Newbie

Hi there, My son Adam has had his starband for almost 4 weeks and is doing great! Hope everyone else is too

[Guest guest]

Hi Beth,

Welcome and hope you are able to find some answers here that will help.

I am fairly new as well but I lurked for awhile before I did any posts - I

was on a few other groups and well, it was a negative experience. You know

what they say about opinions and *ss*oles - everyone has one.

But not here - so far everyone has been very kind and very supportive not

preachy or down right buligerant.

My 5 1/2 year old boy (Austen) is in the process of a formal diagnosis of AS

and my 2 1/2 year old boy () has been formally diagnosed with HFA.

Your 9 year old sounds just like my Austen - however like you I am just

learning about all this and have probably bought about a dozen books so far.

If I can help, please let me know.

Holly

************************************** See what's free at http://www.aol.com.

[Guest guest]

Thanks Holly

>

> Hi Beth,

>

> Welcome and hope you are able to find some answers here that will

help.

>

> I am fairly new as well but I lurked for awhile before I did any

posts - I

> was on a few other groups and well, it was a negative experience.

You know

> what they say about opinions and *ss*oles - everyone has one.

> But not here - so far everyone has been very kind and very

supportive not

> preachy or down right buligerant.

>

> My 5 1/2 year old boy (Austen) is in the process of a formal

diagnosis of AS

> and my 2 1/2 year old boy () has been formally diagnosed

with HFA.

>

> Your 9 year old sounds just like my Austen - however like you I am

just

> learning about all this and have probably bought about a dozen

books so far.

>

> If I can help, please let me know.

>

> Holly

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

>

>

[Guest guest]

Thanks Toni for inviting me here. Only one other person has even

responded, but then again I wrote a book. LOL, but we did start

Summer on a gluten free diet as of today. She kind of thinks it is

pretty cool right now since she gets to pick stuff out from the store

that is just hers, but we will see how long that lasts. Again, thanks

for the invite and directing me here. -Beth

>

> Glad you found us in spite of my lacking computer skills!I can't

help you with the gfcf diet, but others on here do it and will give

you some websites.

> From your description it definitely sounds like Summer is aspie!

You are doing the right thing, researching. And asking any questions

you have, everyone is so supportive and helpful and so far on this

list everyone is respectful even when they disagree! (thats awesome)

Welcome again Beth! Toni

> ( ) Newbie

>

>

> Hi everyone. I found this site because Toni from the BP and this

board

> directed me over here a few days ago. Since then I have been just

reading

> the posts and just kind of absorbing everything. My 9 year old

daughter was

> dx as bipolar almost 4 years ago and again a year or so ago when

we went

> back for help.long story there.LOL, will explain later. Just

recently we had

> to find a new doctor as ours threw her hands up with our

daughter. What a

> blessing from the Lord that was :-) The new doctor said he

thought it

> sounded like AS and gave us a little information and told us to

read up on

> it.

>

> Well, of course as any mother looking for answers.the very minute

we entered

> the house, let the dogs out, made sure the cat hadn't gotten into

anything,

> got the children settles, did the dishes, started a load of

laundry.LOL,

> well you get the idea..as soon as I could, I went online and

started looking

> stuff up..My next several hours were spent in front of the

computer, mouth

> hanging open, with my brain continuing to say.that's my kid!

>

> Some of the symptoms that fit our " more highly intelligent than I

could ever

> be " daughter are that she has no idea about any socialization,

she hates any

> change in routine, this actually could lead to the next world

war, she has

> absolutely no empathy for anyone or anything, she has never been

able to

> tell if we are joking or being serious, thus many a times, we

have had major

> problems because while we were kidding with her, she took it as a

personal

> assult, and just as she can't tell the difference in our tones,

she does

> that with her voice.she will try to be funny and it comes out

angry, or

> " flat " , she has the speech of an adult, although no adult I know

or spend

> time with speaks that eloquently, she has always been too hot, or

too cold,

> she has never had more than three interests at one time and those

interests

> are completely an obsession, she talks constantly, interrupts or

intrudes on

> every conversation, she can talk all day long and doesn't care if

you talk

> back to her or not, she may realize you aren't responding after a

while, and

> then get mad, but it normally takes quite a while, she says

anything and

> everything she thinks, she has even gone as far as correcting our

pastor in

> front of the entire church.nice, let me tell ya', she is

very " clumsy " and

> unsteady, and most of the time her body movements see. " awkward "

She can't

> catch a basketball but she scored off the charts on all her test

scores at

> the end of last school year, She is constantly in a paranoid

state, by that

> I mean, if her pencil is not on the table.we stole it.for the

longest time

> she wouldn't sleep at all, now when she goes to sleep, we could

vacuum her

> bed and she wouldn't wake up, she rages for no apparent reason

and for

> things I couldn't even begin to describe.like dad or I

saying " good

> morning " .scary stuff, I know, don't do this.could be bad for the

family at

> large. :-) She also has some real abandonment issues, although we

can't

> figure this one out as she has never been " abandoned " ..she won't

even let me

> out of her site, much less abandon her.

>

> I know I am being kind of silly, but after the week we have had,

It is

> either cry or laugh.I chose the later as I have done the first

already.A

> LOT. We are newbies in this and aren't sure what to do, what not

to do, how

> to handle this, how to help Summer handle this.

>

> We also have noticed for a VERY long time that Summer has a

tendency to get

> extremely red cheeks and then eventually, explode.and yes, these

always come

> hand in hand.if her cheeks are red.she will lose it shortly. I

have never

> found much on this, but I had never typed in Asperger's Syndrome

and Red

> Cheeks in google before..(possibly because I didn't know what AS

was.but who

> knows :-) ) Anyway, I did that tonight and found something called

> Gluten/Casein Intolerance that is very very typical in children

with

> Asperger's. Does anyone have any info on this? I know this is

terribly long,

> but I wanted to say hi, introduce myself and see if anyone knew

anything on

> this Gluten/Casein Intolerance. Thanks :-) I will stop rambling

now.LOL,

> sorry!

>

> God Bless, Beth, 31

>

> Summer, 9, BP, possible AS - Depakote, Risperdal

>

>

[Guest guest]

Glad you found us in spite of my lacking computer skills!I can't help you with

the gfcf diet, but others on here do it and will give you some websites.

From your description it definitely sounds like Summer is aspie! You are doing

the right thing, researching. And asking any questions you have, everyone is so

supportive and helpful and so far on this list everyone is respectful even when

they disagree! (thats awesome) Welcome again Beth! Toni

( ) Newbie

Hi everyone. I found this site because Toni from the BP and this board

directed me over here a few days ago. Since then I have been just reading

the posts and just kind of absorbing everything. My 9 year old daughter was

dx as bipolar almost 4 years ago and again a year or so ago when we went

back for help.long story there.LOL, will explain later. Just recently we had

to find a new doctor as ours threw her hands up with our daughter. What a

blessing from the Lord that was :-) The new doctor said he thought it

sounded like AS and gave us a little information and told us to read up on

it.

Well, of course as any mother looking for answers.the very minute we entered

the house, let the dogs out, made sure the cat hadn't gotten into anything,

got the children settles, did the dishes, started a load of laundry.LOL,

well you get the idea..as soon as I could, I went online and started looking

stuff up..My next several hours were spent in front of the computer, mouth

hanging open, with my brain continuing to say.that's my kid!

Some of the symptoms that fit our " more highly intelligent than I could ever

be " daughter are that she has no idea about any socialization, she hates any

change in routine, this actually could lead to the next world war, she has

absolutely no empathy for anyone or anything, she has never been able to

tell if we are joking or being serious, thus many a times, we have had major

problems because while we were kidding with her, she took it as a personal

assult, and just as she can't tell the difference in our tones, she does

that with her voice.she will try to be funny and it comes out angry, or

" flat " , she has the speech of an adult, although no adult I know or spend

time with speaks that eloquently, she has always been too hot, or too cold,

she has never had more than three interests at one time and those interests

are completely an obsession, she talks constantly, interrupts or intrudes on

every conversation, she can talk all day long and doesn't care if you talk

back to her or not, she may realize you aren't responding after a while, and

then get mad, but it normally takes quite a while, she says anything and

everything she thinks, she has even gone as far as correcting our pastor in

front of the entire church.nice, let me tell ya', she is very " clumsy " and

unsteady, and most of the time her body movements see. " awkward " She can't

catch a basketball but she scored off the charts on all her test scores at

the end of last school year, She is constantly in a paranoid state, by that

I mean, if her pencil is not on the table.we stole it.for the longest time

she wouldn't sleep at all, now when she goes to sleep, we could vacuum her

bed and she wouldn't wake up, she rages for no apparent reason and for

things I couldn't even begin to describe.like dad or I saying " good

morning " .scary stuff, I know, don't do this.could be bad for the family at

large. :-) She also has some real abandonment issues, although we can't

figure this one out as she has never been " abandoned " ..she won't even let me

out of her site, much less abandon her.

I know I am being kind of silly, but after the week we have had, It is

either cry or laugh.I chose the later as I have done the first already.A

LOT. We are newbies in this and aren't sure what to do, what not to do, how

to handle this, how to help Summer handle this.

We also have noticed for a VERY long time that Summer has a tendency to get

extremely red cheeks and then eventually, explode.and yes, these always come

hand in hand.if her cheeks are red.she will lose it shortly. I have never

found much on this, but I had never typed in Asperger's Syndrome and Red

Cheeks in google before..(possibly because I didn't know what AS was.but who

knows :-) ) Anyway, I did that tonight and found something called

Gluten/Casein Intolerance that is very very typical in children with

Asperger's. Does anyone have any info on this? I know this is terribly long,

but I wanted to say hi, introduce myself and see if anyone knew anything on

this Gluten/Casein Intolerance. Thanks :-) I will stop rambling now.LOL,

sorry!

God Bless, Beth, 31

Summer, 9, BP, possible AS - Depakote, Risperdal

[Guest guest]

Beth,

Welcome,I too am new the group, and have found it very educational

and helpful. My daughter is being evaluated this month for Autistic

Spectrum Disorder (has a consult today with a new Speech Therapist

for that).

Amie,

Mom to Bethany 2.5yrs old

> >

> > Glad you found us in spite of my lacking computer skills!I can't

> help you with the gfcf diet, but others on here do it and will give

> you some websites.

> > From your description it definitely sounds like Summer is aspie!

> You are doing the right thing, researching. And asking any

questions

> you have, everyone is so supportive and helpful and so far on this

> list everyone is respectful even when they disagree! (thats

awesome)

> Welcome again Beth! Toni

> > ( ) Newbie

> >

> >

> > Hi everyone. I found this site because Toni from the BP and

this

> board

> > directed me over here a few days ago. Since then I have been

just

> reading

> > the posts and just kind of absorbing everything. My 9 year old

> daughter was

> > dx as bipolar almost 4 years ago and again a year or so ago

when

> we went

> > back for help.long story there.LOL, will explain later. Just

> recently we had

> > to find a new doctor as ours threw her hands up with our

> daughter. What a

> > blessing from the Lord that was :-) The new doctor said he

> thought it

> > sounded like AS and gave us a little information and told us to

> read up on

> > it.

> >

> > Well, of course as any mother looking for answers.the very

minute

> we entered

> > the house, let the dogs out, made sure the cat hadn't gotten

into

> anything,

> > got the children settles, did the dishes, started a load of

> laundry.LOL,

> > well you get the idea..as soon as I could, I went online and

> started looking

> > stuff up..My next several hours were spent in front of the

> computer, mouth

> > hanging open, with my brain continuing to say.that's my kid!

> >

> > Some of the symptoms that fit our " more highly intelligent than

I

> could ever

> > be " daughter are that she has no idea about any socialization,

> she hates any

> > change in routine, this actually could lead to the next world

> war, she has

> > absolutely no empathy for anyone or anything, she has never

been

> able to

> > tell if we are joking or being serious, thus many a times, we

> have had major

> > problems because while we were kidding with her, she took it as

a

> personal

> > assult, and just as she can't tell the difference in our tones,

> she does

> > that with her voice.she will try to be funny and it comes out

> angry, or

> > " flat " , she has the speech of an adult, although no adult I

know

> or spend

> > time with speaks that eloquently, she has always been too hot,

or

> too cold,

> > she has never had more than three interests at one time and

those

> interests

> > are completely an obsession, she talks constantly, interrupts

or

> intrudes on

> > every conversation, she can talk all day long and doesn't care

if

> you talk

> > back to her or not, she may realize you aren't responding after

a

> while, and

> > then get mad, but it normally takes quite a while, she says

> anything and

> > everything she thinks, she has even gone as far as correcting

our

> pastor in

> > front of the entire church.nice, let me tell ya', she is

> very " clumsy " and

> > unsteady, and most of the time her body movements see. " awkward "

> She can't

> > catch a basketball but she scored off the charts on all her

test

> scores at

> > the end of last school year, She is constantly in a paranoid

> state, by that

> > I mean, if her pencil is not on the table.we stole it.for the

> longest time

> > she wouldn't sleep at all, now when she goes to sleep, we could

> vacuum her

> > bed and she wouldn't wake up, she rages for no apparent reason

> and for

> > things I couldn't even begin to describe.like dad or I

> saying " good

> > morning " .scary stuff, I know, don't do this.could be bad for

the

> family at

> > large. :-) She also has some real abandonment issues, although

we

> can't

> > figure this one out as she has never been " abandoned " ..she

won't

> even let me

> > out of her site, much less abandon her.

> >

> > I know I am being kind of silly, but after the week we have

had,

> It is

> > either cry or laugh.I chose the later as I have done the first

> already.A

> > LOT. We are newbies in this and aren't sure what to do, what

not

> to do, how

> > to handle this, how to help Summer handle this.

> >

> > We also have noticed for a VERY long time that Summer has a

> tendency to get

> > extremely red cheeks and then eventually, explode.and yes,

these

> always come

> > hand in hand.if her cheeks are red.she will lose it shortly. I

> have never

> > found much on this, but I had never typed in Asperger's

Syndrome

> and Red

> > Cheeks in google before..(possibly because I didn't know what

AS

> was.but who

> > knows :-) ) Anyway, I did that tonight and found something

called

> > Gluten/Casein Intolerance that is very very typical in children

> with

> > Asperger's. Does anyone have any info on this? I know this is

> terribly long,

> > but I wanted to say hi, introduce myself and see if anyone knew

> anything on

> > this Gluten/Casein Intolerance. Thanks :-) I will stop rambling

> now.LOL,

> > sorry!

> >

> > God Bless, Beth, 31

> >

> > Summer, 9, BP, possible AS - Depakote, Risperdal

> >

> >

[Guest guest]

Thats great. Special food for a special little girl. I wish I had heard about

gfcf before my kids were grown. There's no way they are going to give up their

gluten now Welcome again. I'm SURE others will see your post about gfcf and

give you some suggestions where to buy some things on line too! WELCOME AGAIN!!

Toni

( ) Newbie

>

>

> Hi everyone. I found this site because Toni from the BP and this

board

> directed me over here a few days ago. Since then I have been just

reading

> the posts and just kind of absorbing everything. My 9 year old

daughter was

> dx as bipolar almost 4 years ago and again a year or so ago when

we went

> back for help.long story there.LOL, will explain later. Just

recently we had

> to find a new doctor as ours threw her hands up with our

daughter. What a

> blessing from the Lord that was :-) The new doctor said he

thought it

> sounded like AS and gave us a little information and told us to

read up on

> it.

>

> Well, of course as any mother looking for answers.the very minute

we entered

> the house, let the dogs out, made sure the cat hadn't gotten into

anything,

> got the children settles, did the dishes, started a load of

laundry.LOL,

> well you get the idea..as soon as I could, I went online and

started looking

> stuff up..My next several hours were spent in front of the

computer, mouth

> hanging open, with my brain continuing to say.that's my kid!

>

> Some of the symptoms that fit our " more highly intelligent than I

could ever

> be " daughter are that she has no idea about any socialization,

she hates any

> change in routine, this actually could lead to the next world

war, she has

> absolutely no empathy for anyone or anything, she has never been

able to

> tell if we are joking or being serious, thus many a times, we

have had major

> problems because while we were kidding with her, she took it as a

personal

> assult, and just as she can't tell the difference in our tones,

she does

> that with her voice.she will try to be funny and it comes out

angry, or

> " flat " , she has the speech of an adult, although no adult I know

or spend

> time with speaks that eloquently, she has always been too hot, or

too cold,

> she has never had more than three interests at one time and those

interests

> are completely an obsession, she talks constantly, interrupts or

intrudes on

> every conversation, she can talk all day long and doesn't care if

you talk

> back to her or not, she may realize you aren't responding after a

while, and

> then get mad, but it normally takes quite a while, she says

anything and

> everything she thinks, she has even gone as far as correcting our

pastor in

> front of the entire church.nice, let me tell ya', she is

very " clumsy " and

> unsteady, and most of the time her body movements see. " awkward "

She can't

> catch a basketball but she scored off the charts on all her test

scores at

> the end of last school year, She is constantly in a paranoid

state, by that

> I mean, if her pencil is not on the table.we stole it.for the

longest time

> she wouldn't sleep at all, now when she goes to sleep, we could

vacuum her

> bed and she wouldn't wake up, she rages for no apparent reason

and for

> things I couldn't even begin to describe.like dad or I

saying " good

> morning " .scary stuff, I know, don't do this.could be bad for the

family at

> large. :-) She also has some real abandonment issues, although we

can't

> figure this one out as she has never been " abandoned " ..she won't

even let me

> out of her site, much less abandon her.

>

> I know I am being kind of silly, but after the week we have had,

It is

> either cry or laugh.I chose the later as I have done the first

already.A

> LOT. We are newbies in this and aren't sure what to do, what not

to do, how

> to handle this, how to help Summer handle this.

>

> We also have noticed for a VERY long time that Summer has a

tendency to get

> extremely red cheeks and then eventually, explode.and yes, these

always come

> hand in hand.if her cheeks are red.she will lose it shortly. I

have never

> found much on this, but I had never typed in Asperger's Syndrome

and Red

> Cheeks in google before..(possibly because I didn't know what AS

was.but who

> knows :-) ) Anyway, I did that tonight and found something called

> Gluten/Casein Intolerance that is very very typical in children

with

> Asperger's. Does anyone have any info on this? I know this is

terribly long,

> but I wanted to say hi, introduce myself and see if anyone knew

anything on

> this Gluten/Casein Intolerance. Thanks :-) I will stop rambling

now.LOL,

> sorry!

>

> God Bless, Beth, 31

>

> Summer, 9, BP, possible AS - Depakote, Risperdal

>

>

[Guest guest]

My daughter was on the diet for a year strictly. She made a lot of

improvement and now is off the diet with enzymes to help digest the

proteins from gluten and casein. I liked Kinnikinnick for bread and

cookies, Miss Roben's for mixes and some premade cookies/crackers,

and Allergen Grocer for snacks, cookies, etc. I bought all other

items at Whole Foods or Trader Joe's.

Good luck!

Jen

>

>

>

> Hi everyone. I found this site because Toni from the BP and this

board

> directed me over here a few days ago. Since then I have been just

reading

> the posts and just kind of absorbing everything. My 9 year old

daughter was

> dx as bipolar almost 4 years ago and again a year or so ago when

we went

> back for help.long story there.LOL, will explain later. Just

recently we had

> to find a new doctor as ours threw her hands up with our daughter.

What a

> blessing from the Lord that was :-) The new doctor said he thought

it

> sounded like AS and gave us a little information and told us to

read up on

> it.

>

>

>

> Well, of course as any mother looking for answers.the very minute

we entered

> the house, let the dogs out, made sure the cat hadn't gotten into

anything,

> got the children settles, did the dishes, started a load of

laundry.LOL,

> well you get the idea..as soon as I could, I went online and

started looking

> stuff up..My next several hours were spent in front of the

computer, mouth

> hanging open, with my brain continuing to say.that's my kid!

>

>

>

> Some of the symptoms that fit our " more highly intelligent than I

could ever

> be " daughter are that she has no idea about any socialization, she

hates any

> change in routine, this actually could lead to the next world war,

she has

> absolutely no empathy for anyone or anything, she has never been

able to

> tell if we are joking or being serious, thus many a times, we have

had major

> problems because while we were kidding with her, she took it as a

personal

> assult, and just as she can't tell the difference in our tones,

she does

> that with her voice.she will try to be funny and it comes out

angry, or

> " flat " , she has the speech of an adult, although no adult I know

or spend

> time with speaks that eloquently, she has always been too hot, or

too cold,

> she has never had more than three interests at one time and those

interests

> are completely an obsession, she talks constantly, interrupts or

intrudes on

> every conversation, she can talk all day long and doesn't care if

you talk

> back to her or not, she may realize you aren't responding after a

while, and

> then get mad, but it normally takes quite a while, she says

anything and

> everything she thinks, she has even gone as far as correcting our

pastor in

> front of the entire church.nice, let me tell ya', she is

very " clumsy " and

> unsteady, and most of the time her body movements see. " awkward "

She can't

> catch a basketball but she scored off the charts on all her test

scores at

> the end of last school year, She is constantly in a paranoid

state, by that

> I mean, if her pencil is not on the table.we stole it.for the

longest time

> she wouldn't sleep at all, now when she goes to sleep, we could

vacuum her

> bed and she wouldn't wake up, she rages for no apparent reason and

for

> things I couldn't even begin to describe.like dad or I saying " good

> morning " .scary stuff, I know, don't do this.could be bad for the

family at

> large. :-) She also has some real abandonment issues, although we

can't

> figure this one out as she has never been " abandoned " ..she won't

even let me

> out of her site, much less abandon her.

>

>

>

> I know I am being kind of silly, but after the week we have had,

It is

> either cry or laugh.I chose the later as I have done the first

already.A

> LOT. We are newbies in this and aren't sure what to do, what not

to do, how

> to handle this, how to help Summer handle this.

>

>

>

> We also have noticed for a VERY long time that Summer has a

tendency to get

> extremely red cheeks and then eventually, explode.and yes, these

always come

> hand in hand.if her cheeks are red.she will lose it shortly. I

have never

> found much on this, but I had never typed in Asperger's Syndrome

and Red

> Cheeks in google before..(possibly because I didn't know what AS

was.but who

> knows :-) ) Anyway, I did that tonight and found something called

> Gluten/Casein Intolerance that is very very typical in children

with

> Asperger's. Does anyone have any info on this? I know this is

terribly long,

> but I wanted to say hi, introduce myself and see if anyone knew

anything on

> this Gluten/Casein Intolerance. Thanks :-) I will stop rambling

now.LOL,

> sorry!

>

>

>

> God Bless, Beth, 31

>

> Summer, 9, BP, possible AS - Depakote, Risperdal

>

>

>

>

[Guest guest]

Thank you Jen.we are on the " try it and see if she likes it " phase now.we

have even made our own bread crumbs with the gf bread and gf peanut butter

cookies. :-) We are getting there. Thanks again! -Beth

_____

From:

[mailto: ] On Behalf Of jennifer_thorson

Sent: Monday, April 02, 2007 6:49 PM

Subject: ( ) Re: Newbie

My daughter was on the diet for a year strictly. She made a lot of

improvement and now is off the diet with enzymes to help digest the

proteins from gluten and casein. I liked Kinnikinnick for bread and

cookies, Miss Roben's for mixes and some premade cookies/crackers,

and Allergen Grocer for snacks, cookies, etc. I bought all other

items at Whole Foods or Trader Joe's.

Good luck!

Jen

>

>

>

> Hi everyone. I found this site because Toni from the BP and this

board

> directed me over here a few days ago. Since then I have been just

reading

> the posts and just kind of absorbing everything. My 9 year old

daughter was

> dx as bipolar almost 4 years ago and again a year or so ago when

we went

> back for help.long story there.LOL, will explain later. Just

recently we had

> to find a new doctor as ours threw her hands up with our daughter.

What a

> blessing from the Lord that was :-) The new doctor said he thought

it

> sounded like AS and gave us a little information and told us to

read up on

> it.

>

>

>

> Well, of course as any mother looking for answers.the very minute

we entered

> the house, let the dogs out, made sure the cat hadn't gotten into

anything,

> got the children settles, did the dishes, started a load of

laundry.LOL,

> well you get the idea..as soon as I could, I went online and

started looking

> stuff up..My next several hours were spent in front of the

computer, mouth

> hanging open, with my brain continuing to say.that's my kid!

>

>

>

> Some of the symptoms that fit our " more highly intelligent than I

could ever

> be " daughter are that she has no idea about any socialization, she

hates any

> change in routine, this actually could lead to the next world war,

she has

> absolutely no empathy for anyone or anything, she has never been

able to

> tell if we are joking or being serious, thus many a times, we have

had major

> problems because while we were kidding with her, she took it as a

personal

> assult, and just as she can't tell the difference in our tones,

she does

> that with her voice.she will try to be funny and it comes out

angry, or

> " flat " , she has the speech of an adult, although no adult I know

or spend

> time with speaks that eloquently, she has always been too hot, or

too cold,

> she has never had more than three interests at one time and those

interests

> are completely an obsession, she talks constantly, interrupts or

intrudes on

> every conversation, she can talk all day long and doesn't care if

you talk

> back to her or not, she may realize you aren't responding after a

while, and

> then get mad, but it normally takes quite a while, she says

anything and

> everything she thinks, she has even gone as far as correcting our

pastor in

> front of the entire church.nice, let me tell ya', she is

very " clumsy " and

> unsteady, and most of the time her body movements see. " awkward "

She can't

> catch a basketball but she scored off the charts on all her test

scores at

> the end of last school year, She is constantly in a paranoid

state, by that

> I mean, if her pencil is not on the table.we stole it.for the

longest time

> she wouldn't sleep at all, now when she goes to sleep, we could

vacuum her

> bed and she wouldn't wake up, she rages for no apparent reason and

for

> things I couldn't even begin to describe.like dad or I saying " good

> morning " .scary stuff, I know, don't do this.could be bad for the

family at

> large. :-) She also has some real abandonment issues, although we

can't

> figure this one out as she has never been " abandoned " ..she won't

even let me

> out of her site, much less abandon her.

>

>

>

> I know I am being kind of silly, but after the week we have had,

It is

> either cry or laugh.I chose the later as I have done the first

already.A

> LOT. We are newbies in this and aren't sure what to do, what not

to do, how

> to handle this, how to help Summer handle this.

>

>

>

> We also have noticed for a VERY long time that Summer has a

tendency to get

> extremely red cheeks and then eventually, explode.and yes, these

always come

> hand in hand.if her cheeks are red.she will lose it shortly. I

have never

> found much on this, but I had never typed in Asperger's Syndrome

and Red

> Cheeks in google before..(possibly because I didn't know what AS

was.but who

> knows :-) ) Anyway, I did that tonight and found something called

> Gluten/Casein Intolerance that is very very typical in children

with

> Asperger's. Does anyone have any info on this? I know this is

terribly long,

> but I wanted to say hi, introduce myself and see if anyone knew

anything on

> this Gluten/Casein Intolerance. Thanks :-) I will stop rambling

now.LOL,

> sorry!

>

>

>

> God Bless, Beth, 31

>

> Summer, 9, BP, possible AS - Depakote, Risperdal

>

>

>

>

[Guest guest]

Hi . Welcome to the group. If you are concerned about cranio,

can you call your dr and have him/her order an xray or CT scan to

make sure? It might give you some peace of mind.

Becky, repo mod

, repo grad

>

> I guess since I just posted a question I should intro. I am on the

> crash course at this point. I am , a SC SAHM to 4 kids.

> ph, my youngest just turned 5 months. My dh commented on his

> head before he was 2 months old. I asked the doctor about it at

his

> 2 mo and she said we would " keep an eye on it " . I did a google

> search and really only learned about repositioning being helpful so

I

> tried that, we avoided being on his back awake but he would only

> sleep swaddled. As he got older we alternated sides as best we

could

> (he became a side sleeper but preferred 1 side over the other) and

> then when he learned to roll over he became a stomach sleeper and

> nothing you could do to change his mind on positioning. At 4

months

> his head was still like that and his head had only grown ½ " in 2

> months (dropping his head from 75% to 50% despite his height being

> above 97%) so the doctor was concerned and wanted him to come back

in

> a month to be remeasured. At that point I tried figuring out what

> the worry was and learned about craniosynosis. At his follow up

> though his head was up another 3/4 " and that put him back to 75%

but

> since it was still small compared to ht and wt and he still was

> misshaped they contacted the NS. The NS said since his head is

> growing consistantly and he still has his " soft spot " it is

> plagiocephaly and suggested a helmet though agreed to see him but

> only at the next available regular appt (5/30). So the physician

> contacted CT (what the NS office uses) in Charlotte (2 hrs from us)

> to have us come in next week for casting. He definitely has a flat

> side to the one side of his head right by his ear, the opposite

side

> has a bulge on the top of his head but it isn't huge and his eyes

and

> ears appear fine though he does seem to have a slight difference in

> the cheek right near the ear.

>

> I guess my questions are should I be worried this is craniosynosis

> and not plagiocephaly? And if so will it hurt him to get the

helmet

> before his NS consult? IMHO it has gotten better but maybe it just

> looks a bit better b/c his head is bigger? Does this mean it could

> possibly just get better on it's own? Since, compared to the

> pictures of others I have seen his is pretty mild, does that mean

> insurance will not cover it? Any other questions I should think

> about or things to consider? I am on the crash course, having only

> read about it today and yesterday so don't know a lot but I did

read

> the FAQ at CAPP about both plagio and cranio as well as look at

> pictures and read some posts here and there.

>

[Guest guest]

Hi , Welcome! No, it won't hurt to get the band before the

NS consult or an xray or CT if you go that route. Worst case

it 'is' CT and you need surgery and a new band casted. In our case

we never had an xray or CT either since the specialist felt that it

looked like classic plagio and that was supported up by our telling

him that our son always slept facing right. With continued

repositioning his head 'could' get better, but in our case we didn't

want to take the chance. You can band later (usually starting up to

12 months), but since head growth slows considerably at that age he

would need to wear the band for a lot longer period of time to

achieve the same amount of correction. Good luck!

Sheila, mom to , 19 months, DOCband

> >

> > I guess since I just posted a question I should intro. I am on

the

> > crash course at this point. I am , a SC SAHM to 4 kids.

> > ph, my youngest just turned 5 months. My dh commented on

his

> > head before he was 2 months old. I asked the doctor about it at

> his

> > 2 mo and she said we would " keep an eye on it " . I did a google

> > search and really only learned about repositioning being helpful

so

> I

> > tried that, we avoided being on his back awake but he would only

> > sleep swaddled. As he got older we alternated sides as best we

> could

> > (he became a side sleeper but preferred 1 side over the other)

and

> > then when he learned to roll over he became a stomach sleeper

and

> > nothing you could do to change his mind on positioning. At 4

> months

> > his head was still like that and his head had only grown ½ " in 2

> > months (dropping his head from 75% to 50% despite his height

being

> > above 97%) so the doctor was concerned and wanted him to come

back

> in

> > a month to be remeasured. At that point I tried figuring out

what

> > the worry was and learned about craniosynosis. At his follow up

> > though his head was up another 3/4 " and that put him back to 75%

> but

> > since it was still small compared to ht and wt and he still was

> > misshaped they contacted the NS. The NS said since his head is

> > growing consistantly and he still has his " soft spot " it is

> > plagiocephaly and suggested a helmet though agreed to see him

but

> > only at the next available regular appt (5/30). So the

physician

> > contacted CT (what the NS office uses) in Charlotte (2 hrs from

us)

> > to have us come in next week for casting. He definitely has a

flat

> > side to the one side of his head right by his ear, the opposite

> side

> > has a bulge on the top of his head but it isn't huge and his

eyes

> and

> > ears appear fine though he does seem to have a slight difference

in

> > the cheek right near the ear.

> >

> > I guess my questions are should I be worried this is

craniosynosis

> > and not plagiocephaly? And if so will it hurt him to get the

> helmet

> > before his NS consult? IMHO it has gotten better but maybe it

just

> > looks a bit better b/c his head is bigger? Does this mean it

could

> > possibly just get better on it's own? Since, compared to the

> > pictures of others I have seen his is pretty mild, does that

mean

> > insurance will not cover it? Any other questions I should think

> > about or things to consider? I am on the crash course, having

only

> > read about it today and yesterday so don't know a lot but I did

> read

> > the FAQ at CAPP about both plagio and cranio as well as look at

> > pictures and read some posts here and there.

> >

>

[Guest guest]

Hmm, I would think if the doctor is concerned of cranio it would be better to get it checked out prior to banding. I think banding prior (if it is cranio) would defeat the whole purpose of the band. My son is having the opposite issue (his head was 75th percentile until 6 months then 95th percentile 6-9 months). We go back to have his head remeasured in a few weeks. They want to rule of hydracephalus. I think there was a discrepancy in measuring because at 6 and 9 months the doctor remeasured because he didn't think that what the nurse got was what it should be....I hope for me and for you that it is just a discrepancy in measuring and nothing more. Good luck. lisaSheila <lotspeis@...> wrote: Hi , Welcome! No, it won't hurt to get the band before the NS consult or an xray or CT if you go that route. Worst case it 'is' CT and you need surgery and a new band casted. In our case we never had an xray or CT either since the specialist felt that it looked like classic plagio and that was supported up by our telling him that our son always slept facing right. With continued repositioning his head 'could' get better, but in our case we didn't want to take the chance. You can band later (usually starting up to 12 months), but since head growth slows considerably at that age he would need to wear the band for a lot longer period of time to achieve the same amount of

correction. Good luck!Sheila, mom to , 19 months, DOCband> >> > I guess since I just posted a question I should intro. I am on the > > crash course at this point. I am , a SC SAHM to 4 kids. > > ph, my youngest just turned 5 months. My dh commented on his > > head before he was 2 months old. I asked the doctor

about it at > his > > 2 mo and she said we would "keep an eye on it". I did a google > > search and really only learned about repositioning being helpful so > I > > tried that, we avoided being on his back awake but he would only > > sleep swaddled. As he got older we alternated sides as best we > could > > (he became a side sleeper but preferred 1 side over the other) and > > then when he learned to roll over he became a stomach sleeper and > > nothing you could do to change his mind on positioning. At 4 > months > > his head was still like that and his head had only grown ½" in 2 > > months (dropping his head from 75% to 50% despite his height being > > above 97%) so the doctor was concerned and wanted him to come back > in > > a month to be remeasured. At that point I tried figuring out what >

> the worry was and learned about craniosynosis. At his follow up > > though his head was up another 3/4" and that put him back to 75% > but > > since it was still small compared to ht and wt and he still was > > misshaped they contacted the NS. The NS said since his head is > > growing consistantly and he still has his "soft spot" it is > > plagiocephaly and suggested a helmet though agreed to see him but > > only at the next available regular appt (5/30). So the physician > > contacted CT (what the NS office uses) in Charlotte (2 hrs from us) > > to have us come in next week for casting. He definitely has a flat > > side to the one side of his head right by his ear, the opposite > side > > has a bulge on the top of his head but it isn't huge and his eyes > and > > ears appear fine though he does seem to have a slight

difference in > > the cheek right near the ear.> > > > I guess my questions are should I be worried this is craniosynosis > > and not plagiocephaly? And if so will it hurt him to get the > helmet > > before his NS consult? IMHO it has gotten better but maybe it just > > looks a bit better b/c his head is bigger? Does this mean it could > > possibly just get better on it's own? Since, compared to the > > pictures of others I have seen his is pretty mild, does that mean > > insurance will not cover it? Any other questions I should think > > about or things to consider? I am on the crash course, having only > > read about it today and yesterday so don't know a lot but I did > read > > the FAQ at CAPP about both plagio and cranio as well as look at > > pictures and read some posts here and there.>

>>

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[Guest guest]

Welcome ! This is a great community of parents who are going thru or have been thru this whole Plagio journey. I see your already getting some good responses!

I would say that if you're concerned then call the ped or the NS and see if they can do a quick check for cranio. An MRI isn't always needed - our drs felt the sutures and could tell they were open. You could also call CT and talk to them about your concerns and see what they have to say. They may want to wait to cast until cranio has been for sure ruled out - or they may take the drs word for it.

HTH!

Jen and Luli (16mo)

Left Tort - Right Plagio - Hanger Band Grad - CA

tallulah jayne

http://www.babiesonline.com/babies/j/jens5th/

newbie

I guess since I just posted a question I should intro. I am on the

crash course at this point. I am , a SC SAHM to 4 kids.

ph, my youngest just turned 5 months. My dh commented on his

head before he was 2 months old. I asked the doctor about it at his

2 mo and she said we would "keep an eye on it". I did a google

search and really only learned about repositioning being helpful so I

tried that, we avoided being on his back awake but he would only

sleep swaddled. As he got older we alternated sides as best we could

(he became a side sleeper but preferred 1 side over the other) and

then when he learned to roll over he became a stomach sleeper and

nothing you could do to change his mind on positioning. At 4 months

his head was still like that and his head had only grown ½" in 2

months (dropping his head from 75% to 50% despite his height being

above 97%) so the doctor was concerned and wanted him to come back in

a month to be remeasured. At that point I tried figuring out what

the worry was and learned about craniosynosis. At his follow up

though his head was up another 3/4" and that put him back to 75% but

since it was still small compared to ht and wt and he still was

misshaped they contacted the NS. The NS said since his head is

growing consistantly and he still has his "soft spot" it is

plagiocephaly and suggested a helmet though agreed to see him but

only at the next available regular appt (5/30). So the physician

contacted CT (what the NS office uses) in Charlotte (2 hrs from us)

to have us come in next week for casting. He definitely has a flat

side to the one side of his head right by his ear, the opposite side

has a bulge on the top of his head but it isn't huge and his eyes and

ears appear fine though he does seem to have a slight difference in

the cheek right near the ear.

I guess my questions are should I be worried this is craniosynosis

and not plagiocephaly? And if so will it hurt him to get the helmet

before his NS consult? IMHO it has gotten better but maybe it just

looks a bit better b/c his head is bigger? Does this mean it could

possibly just get better on it's own? Since, compared to the

pictures of others I have seen his is pretty mild, does that mean

insurance will not cover it? Any other questions I should think

about or things to consider? I am on the crash course, having only

read about it today and yesterday so don't know a lot but I did read

the FAQ at CAPP about both plagio and cranio as well as look at

pictures and read some posts here and there.

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Welcome ,

I saw your other post too, but don't have any good info to share on

that one. It is probably not cranio since that is rare, but if you did

use a band it wouldn't hurt the cranio, it just wouldn't work (and

cranio itself it bad for brain growth). the NS should be able to

determine either based on the headshape and experience or by doing a

CT scan etc. Our doc didn't do any CT scan or MRI, just gave us the rx

for the band, and it worked!

My daughter was diagnosed at 4 mo and got her band at 5 mo. It is a

really good age to start. CT should be able to give you measurements

before it the casting and recommend if they think it is need. I'm not

really sure what your insurer's criteria will be because it varies

widely. Even if they deny you should decide for yourself what is best

and appeal if needed. Many people are automatically denied but can win

on appeal.

let us know how things progress.

-christine

sydney 15 mo starband grad

>

> I guess since I just posted a question I should intro. I am on the

> crash course at this point. I am , a SC SAHM to 4 kids.

> ph, my youngest just turned 5 months. My dh commented on his

> head before he was 2 months old. I asked the doctor about it at his

> 2 mo and she said we would " keep an eye on it " . I did a google

> search and really only learned about repositioning being helpful so I

> tried that, we avoided being on his back awake but he would only

> sleep swaddled. As he got older we alternated sides as best we could

> (he became a side sleeper but preferred 1 side over the other) and

> then when he learned to roll over he became a stomach sleeper and

> nothing you could do to change his mind on positioning. At 4 months

> his head was still like that and his head had only grown ½ " in 2

> months (dropping his head from 75% to 50% despite his height being

> above 97%) so the doctor was concerned and wanted him to come back in

> a month to be remeasured. At that point I tried figuring out what

> the worry was and learned about craniosynosis. At his follow up

> though his head was up another 3/4 " and that put him back to 75% but

> since it was still small compared to ht and wt and he still was

> misshaped they contacted the NS. The NS said since his head is

> growing consistantly and he still has his " soft spot " it is

> plagiocephaly and suggested a helmet though agreed to see him but

> only at the next available regular appt (5/30). So the physician

> contacted CT (what the NS office uses) in Charlotte (2 hrs from us)

> to have us come in next week for casting. He definitely has a flat

> side to the one side of his head right by his ear, the opposite side

> has a bulge on the top of his head but it isn't huge and his eyes and

> ears appear fine though he does seem to have a slight difference in

> the cheek right near the ear.

>

> I guess my questions are should I be worried this is craniosynosis

> and not plagiocephaly? And if so will it hurt him to get the helmet

> before his NS consult? IMHO it has gotten better but maybe it just

> looks a bit better b/c his head is bigger? Does this mean it could

> possibly just get better on it's own? Since, compared to the

> pictures of others I have seen his is pretty mild, does that mean

> insurance will not cover it? Any other questions I should think

> about or things to consider? I am on the crash course, having only

> read about it today and yesterday so don't know a lot but I did read

> the FAQ at CAPP about both plagio and cranio as well as look at

> pictures and read some posts here and there.

>

[Guest guest]

Hello, and relax.

a helmet is probably perfect for your baby because she can sleep in

her favorite position and her head will be just fine. My dd also had

brachy (flat in back) and loved to sleep the way you describe. We used

memory foam with her from day one, but it didn't help. She did really

well in a helmet and hasn't had any regression since graduating. she

had severe brachy and wore a helmet for 5 mo. Many babies finish

sooner. You are starting at a very good age, and I'm sure your dd will

be just fine.

Good luck with it.

-christine

sydney 17 mo starband grad

>

> Hi everyone.

> I am new here, and am scared and feel so guilty.

> I have a beautiful 5 month old baby that will be going for her first

> scan next wed. to see if she needs banding. I am sure she will be

> though. she has such a flat back head. I feel so guilty about it.

> I feel there had to be something that i could have done to prevent

> this from happening. I have a 4 year old son that is fine. I tried

> to reposition her on the repositioner,and have her sleep more on her

> sides but she was so stuborn! She HAS to be flat on her back, and

> have her hands behind her head to fall asleep. And if I tried

> reposition her after I knew she was asleep she would just wake up

> and fight me with it.I also have a 1inch thick peice of memory foam

> under her sheets of her bed to see if that would help, but i can not

> see a differance as of yet.She is on her back for 10 to 12 hours at

> night, and then of course she takes 2 to 3 naps a day. When she is

> up she is either in my arms, in a bumbo or exersaucer. The only time

> I do have her on her back persay is in her car seat. I don't know

> what else I can do. I feel so scared as well with the unknowns and

> how will she feel about it, and how people will see it. Like I

> neglected her and allowed her to just lay around which is not true.

> I have seen some pics of your beautiful babies being casted and it

> looks so much worse then getting shots. I don't know as a mother

> how will i handle her having to go threw that.

> I have head this is a great group, and I know I can feel better

> knowing there are other parents out there that are going threw the

> same things.

>

[Guest guest]

Hi,

The band is no big deal. I worried for nothing. My son was the

same happy little boy with the band as without. My ped. said some

babies are more prone to flattening. I really do think this is

true. We did tummy time, exersaucer, bumbo, repostioning; however,

we still needed to band him. I know others that their baby was on

their back all the time and their head is fine. Good luck. The

band will become a part of your routine and it does not hurt the

baby one bit.

PS: He started at 7.5 and wore it till 9.5 (which is fast for his

age but he was only moderate). CT said 5 months is the best age to

band.

> >

> > Hi everyone.

> > I am new here, and am scared and feel so guilty.

> > I have a beautiful 5 month old baby that will be going for her

first

> > scan next wed. to see if she needs banding. I am sure she will

be

> > though. she has such a flat back head. I feel so guilty about

it.

> > I feel there had to be something that i could have done to

prevent

> > this from happening. I have a 4 year old son that is fine. I

tried

> > to reposition her on the repositioner,and have her sleep more on

her

> > sides but she was so stuborn! She HAS to be flat on her back,

and

> > have her hands behind her head to fall asleep. And if I tried

> > reposition her after I knew she was asleep she would just wake

up

> > and fight me with it.I also have a 1inch thick peice of memory

foam

> > under her sheets of her bed to see if that would help, but i can

not

> > see a differance as of yet.She is on her back for 10 to 12 hours

at

> > night, and then of course she takes 2 to 3 naps a day. When she

is

> > up she is either in my arms, in a bumbo or exersaucer. The only

time

> > I do have her on her back persay is in her car seat. I don't

know

> > what else I can do. I feel so scared as well with the unknowns

and

> > how will she feel about it, and how people will see it. Like I

> > neglected her and allowed her to just lay around which is not

true.

> > I have seen some pics of your beautiful babies being casted and

it

> > looks so much worse then getting shots. I don't know as a

mother

> > how will i handle her having to go threw that.

> > I have head this is a great group, and I know I can feel better

> > knowing there are other parents out there that are going threw

the

> > same things.

> >

>