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Hi Lori & welcome to our group!!

Sounds like things are progressing rather nicely for on thus far. Ah yes, many members have Cigna in our group, and many (not all) have been denied coverage for their baby's band, sorry to tell you this!! But like I said, not all, hopefully Cigna will come thru for you guys!!

on is at a great younger age to get him banded, he should receive nice correction!! Your repositioning story w/on is like many in the group, myself included! Those babies can wiggle out of anything to get back on their flat side, it's very frustrating. I didn't use the boppy products you're questioning, lots in our group have. Keep plugging away w/the repositioning. It does help keeping him in the exesaucer, jumper, whatever keeps him off his flatside. There are tips at www.plagiocephaly.org/support

Welcome again, we're happy you found us!! Keep us posted, fingers crossed Cigna comes thru for coverage!

Debbie Abby's mom DOCGrad MIlorikhall <lorikhall@...> wrote:

Hi there...I wanted to introduce myself (Lori) and ds on 1/14/03. on was diagnosed with positional plagio at 4 months. We noticed his "flatness" at his 2 month appt...the ped just told us to position him on his right side to sleep and to keep him off his back during the day. Well...needless to say...I wasn't aggressive enough. I purchased a sleep positioner and he managed to "break" lose...I kept hearing the velcros. The ped finally referred us to the cranial tech...after his consult...they suggested the DOC Band. We went to a cranial facial surgeon for measurements and he suggested the band, also. Now we are waiting for the pre-determination from Cigna. Anyone have problems with Cigna? We are still trying to repo him during the days and nights...we finally got him to sleep on his sides (at least for 4 hours at a time)...I'll wake up in the middle of the night and he has managed to get on his back...very stubborn. Anyone have suggestions during the day...he does have an exersaucer (30 minutes max) and a jumper (I have to swing him)...and unfortunately he still hates tummy time...is the boppy tummy time mat a good purchase? How about the mini boppy or noggin nest? Any suggestions would be greatly appreciated. Thanks for letting me share. I'm really glad I found this support group. I'll keep updating on's progress.Lori and on 1/14/03

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Welcome to the group. This group is so supportive and helpful. Good luck with your insurance. We didn't have any of the tummy time items. Please keep us posted on on.

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

New to this board

Hi there...I wanted to introduce myself (Lori) and ds on 1/14/03. on was diagnosed with positional plagio at 4 months. We noticed his "flatness" at his 2 month appt...the ped just told us to position him on his right side to sleep and to keep him off his back during the day. Well...needless to say...I wasn't aggressive enough. I purchased a sleep positioner and he managed to "break" lose...I kept hearing the velcros. The ped finally referred us to the cranial tech...after his consult...they suggested the DOC Band. We went to a cranial facial surgeon for measurements and he suggested the band, also. Now we are waiting for the pre-determination from Cigna. Anyone have problems with Cigna? We are still trying to repo him during the days and nights...we finally got him to sleep on his sides (at least for 4 hours at a time)...I'll wake up in the middle of the night and he has managed to get on his back...very stubborn. Anyone have suggestions during the day...he does have an exersaucer (30 minutes max) and a jumper (I have to swing him)...and unfortunately he still hates tummy time...is the boppy tummy time mat a good purchase? How about the mini boppy or noggin nest? Any suggestions would be greatly appreciated. Thanks for letting me share. I'm really glad I found this support group. I'll keep updating on's progress.Lori and on 1/14/03For more plagio info

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Welcome! My daughter was diagnosed at 4 months as well. She's 6

months now and has just one week ago finally gotten (is that a

word?) her band. I can already see some change! I don't know how

Cigna will respond. According to the gal we work with, most

insurance companies either don't cover it or fight it. She also

says they like when people have Medicaid because they pay better

than anyone else. Thankfully, my daughter is currently on

Medicaid. I take my daughter to work with me, and until recently

she spent a lot of time in her carseat/carrier and/or her bassinet

that I keep up there. She has more than just a flat spot, though,

and her flat spot is lower right in the back, so I don't think that

effected her as much. I still put her in her swing some, and she

sits up in it now, has almost outgrown it, and put her in an

exersaucer at home, and in a walker at work, though she can't reach

the floor yet, she is starting to tolerate being in it longer now. I

don't know much about the jumper. I'd say the exersaucer and tummy

time as much as possible, or sit him up holding him as long and as

much as you can, and maybe he'll start sitting up on his own in the

next month or so. If he does get banded, you won't have to worry

so much about that. Good luck, and keep us informed!

Caro, mom to Baby Mo, 6 1/2 months old, Docbanded 5/23/03

--- In Plagiocephaly , " lorikhall " <lorikhall@y...>

wrote:

> Hi there...I wanted to introduce myself (Lori) and ds on

> 1/14/03. on was diagnosed with positional plagio at 4

months.

> We noticed his " flatness " at his 2 month appt...the ped just told

us

> to position him on his right side to sleep and to keep him off his

> back during the day. Well...needless to say...I wasn't aggressive

> enough. I purchased a sleep positioner and he managed to " break "

> lose...I kept hearing the velcros. The ped finally referred us to

the

> cranial tech...after his consult...they suggested the DOC Band.

We

> went to a cranial facial surgeon for measurements and he suggested

> the band, also. Now we are waiting for the pre-determination from

> Cigna. Anyone have problems with Cigna? We are still trying to

repo

> him during the days and nights...we finally got him to sleep on

his

> sides (at least for 4 hours at a time)...I'll wake up in the

middle

> of the night and he has managed to get on his back...very

stubborn.

> Anyone have suggestions during the day...he does have an

exersaucer

> (30 minutes max) and a jumper (I have to swing him)...and

> unfortunately he still hates tummy time...is the boppy tummy time

mat

> a good purchase? How about the mini boppy or noggin nest? Any

> suggestions would be greatly appreciated. Thanks for letting me

> share. I'm really glad I found this support group. I'll keep

> updating on's progress.

> Lori and on 1/14/03

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Hi Lori!

Welcome to the board. My dd did the same thing when we tried repo,

she broke loose every time, so now we are in the STARband. We have

Cigna Select, which sucks I might add, but they did partially cover

her band treatment, we still had to pay quite a bit. Glad you found

this group, keep us updated!

Good luck,

Kat & Olivia-STARbanded 3/5/03

TX

--- In Plagiocephaly , " lorikhall " <lorikhall@y...>

wrote:

> Hi there...I wanted to introduce myself (Lori) and ds on

> 1/14/03. on was diagnosed with positional plagio at 4

months.

> We noticed his " flatness " at his 2 month appt...the ped just told

us

> to position him on his right side to sleep and to keep him off his

> back during the day. Well...needless to say...I wasn't aggressive

> enough. I purchased a sleep positioner and he managed to " break "

> lose...I kept hearing the velcros. The ped finally referred us to

the

> cranial tech...after his consult...they suggested the DOC Band. We

> went to a cranial facial surgeon for measurements and he suggested

> the band, also. Now we are waiting for the pre-determination from

> Cigna. Anyone have problems with Cigna? We are still trying to

repo

> him during the days and nights...we finally got him to sleep on his

> sides (at least for 4 hours at a time)...I'll wake up in the middle

> of the night and he has managed to get on his back...very

stubborn.

> Anyone have suggestions during the day...he does have an exersaucer

> (30 minutes max) and a jumper (I have to swing him)...and

> unfortunately he still hates tummy time...is the boppy tummy time

mat

> a good purchase? How about the mini boppy or noggin nest? Any

> suggestions would be greatly appreciated. Thanks for letting me

> share. I'm really glad I found this support group. I'll keep

> updating on's progress.

> Lori and on 1/14/03

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Hi Lori,

I see you've gotten your questions answered already so I'll just

welcome you to the group! Please keep us posted on on and Cigna.

--- In Plagiocephaly , " lorikhall " <lorikhall@y...>

wrote:

> Hi there...I wanted to introduce myself (Lori) and ds on

> 1/14/03. on was diagnosed with positional plagio at 4

months.

> We noticed his " flatness " at his 2 month appt...the ped just told

us

> to position him on his right side to sleep and to keep him off his

> back during the day. Well...needless to say...I wasn't aggressive

> enough. I purchased a sleep positioner and he managed to " break "

> lose...I kept hearing the velcros. The ped finally referred us to

the

> cranial tech...after his consult...they suggested the DOC Band. We

> went to a cranial facial surgeon for measurements and he suggested

> the band, also. Now we are waiting for the pre-determination from

> Cigna. Anyone have problems with Cigna? We are still trying to

repo

> him during the days and nights...we finally got him to sleep on his

> sides (at least for 4 hours at a time)...I'll wake up in the middle

> of the night and he has managed to get on his back...very

stubborn.

> Anyone have suggestions during the day...he does have an exersaucer

> (30 minutes max) and a jumper (I have to swing him)...and

> unfortunately he still hates tummy time...is the boppy tummy time

mat

> a good purchase? How about the mini boppy or noggin nest? Any

> suggestions would be greatly appreciated. Thanks for letting me

> share. I'm really glad I found this support group. I'll keep

> updating on's progress.

> Lori and on 1/14/03

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Hi Lori! My Kurt is just one day older than on! While we were trying repo we used the tummy time mat and Kurt really liked it. I tried to keep him off his head, but I did use the Noggin Nest when he was in the car seat. We ended up banding him anyway after we tried repo for about 6 weeks. He still likes to use the tummy time mat though! Good luck!

Kim

mom to Kurt (STARbanded 5/8/03)lorikhall <lorikhall@...> wrote:

Hi there...I wanted to introduce myself (Lori) and ds on 1/14/03. on was diagnosed with positional plagio at 4 months. We noticed his "flatness" at his 2 month appt...the ped just told us to position him on his right side to sleep and to keep him off his back during the day. Well...needless to say...I wasn't aggressive enough. I purchased a sleep positioner and he managed to "break" lose...I kept hearing the velcros. The ped finally referred us to the cranial tech...after his consult...they suggested the DOC Band. We went to a cranial facial surgeon for measurements and he suggested the band, also. Now we are waiting for the pre-determination from Cigna. Anyone have problems with Cigna? We are still trying to repo him during the days and nights...we finally got him to sleep on his sides (at least for 4 hours at a time)...I'll wake up in the middle of the night and he has managed to get on his back...very stubborn. Anyone have suggestions during the day...he does have an exersaucer (30 minutes max) and a jumper (I have to swing him)...and unfortunately he still hates tummy time...is the boppy tummy time mat a good purchase? How about the mini boppy or noggin nest? Any suggestions would be greatly appreciated. Thanks for letting me share. I'm really glad I found this support group. I'll keep updating on's progress.Lori and on 1/14/03For more plagio info

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  • 1 year later...
Guest guest

Hi Sheri!

Welcome to the group. It is nice to meet you. You are very fortunate

that Kadie was diagnosed very early. Have you been having success

with repositioning her now for sleep and keeping her off the flat

spot as much as possible when awake? I hope that your efforts

improve her plagio but should she need a helmet there are many people

here that can give you very good advice. I am fairly new here and we

are getting my ds's helmet ordered today. It was not an easy

decision! Please let us know if you have any specific questions or

concerns and I will try to help you as much as possible.

Sue

Colin F. (brachy) 8.5 mos.

Buffalo, NY

going to leave to get scanned NOW :-)

> Hi all just wanted to intro myself. I am Sheri and I have a

> 4 month old who has Torticollis and Plagio. Her name is Kadie. She

> is in PT now for her tort and starts it here at home tomorrow. Long

> story short>>>> Dh travels with his work we just got home to KY we

> had been in Ok for 9 months. Kadie started PT there and is

> beginning here tomorrow. She had a ctscan and all is ok but

> radiologist couldnt rule out a brain prob ( only cause hse is so

> young) but she is getting an MRI the 28th to be sure. She is fine

> neurologically so we think it is just a shift dure to her plagio.

> SHe goes to her neurologist July 15th to see if she needs a helmet.

> Nice meeting eveyone adn hope to get ot know u all.

>

> Sheri mom to 2

> wife to 1 :)

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Hi Sheri,

Welcome to the group, we're glad to have you. You sure are on top of

the game! Your baby is at a great younger age to receive excellent

correction should she be banded. Please let us know how you make out

at your appt. Good luck and please keep us posted.

> Hi all just wanted to intro myself. I am Sheri and I have a

> 4 month old who has Torticollis and Plagio. Her name is Kadie. She

> is in PT now for her tort and starts it here at home tomorrow. Long

> story short>>>> Dh travels with his work we just got home to KY we

> had been in Ok for 9 months. Kadie started PT there and is

> beginning here tomorrow. She had a ctscan and all is ok but

> radiologist couldnt rule out a brain prob ( only cause hse is so

> young) but she is getting an MRI the 28th to be sure. She is fine

> neurologically so we think it is just a shift dure to her plagio.

> SHe goes to her neurologist July 15th to see if she needs a helmet.

> Nice meeting eveyone adn hope to get ot know u all.

>

> Sheri mom to 2

> wife to 1 :)

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  • 7 months later...

Deanna,

Welcome to the group! I just looked at Mackenzie's photos, and she

looks so cute in the sink! I do see the head shape concern you

wrote about. It may be sort of a brachy head shape, where the back

of the head is more flattened, and the crown pushed upwards. From

what I could tell, your daughter's head isn't excessively wide,

which is so common with brachy babies, so that's great.

http://www.cranialtech.com/medicalinfo/assessment/brachycephaly.pdf

A band might do a good job of holding Mackenzie's head height at the

crown in check, while allowing the rest of her head to round out

accordingly. The orthos at Cranial Tech would provide an objective

assessment of her severity, so if I were you, I would go for a

consult to see what they think about correction potential to help

you with your decision.

Let us know if you do decide to go for the consult. How old is

Mackenzie?

Take care,

Christie (Mom to Repo'd Remy)

>

> Hello Everyone

>

> I am new to this board...but from what I have seen so far it seems

> great! Everyone if very supportive. I posted a few pictures of

my

> daughters head in a folder called MackenzieH...I was wondering if

you

> could possibly take a look and let me know what you think. Do you

> see a problem. To me her head looks a little elongated in the

> back...kind of like the cone head shape of a newborn baby. Let me

> know what you think. I was going to make an appointment with

Cranial

> Tech for a free consultation.

>

> Thanks in advance.

> Deana

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Thanks for looking....I knew I was not going crazy. Mackenzie is 8

monts 1 week. She was 6 weeks premature so her adjusted age is a

little over 6 1/2 months.

> >

> > Hello Everyone

> >

> > I am new to this board...but from what I have seen so far it

seems

> > great! Everyone if very supportive. I posted a few pictures of

> my

> > daughters head in a folder called MackenzieH...I was wondering if

> you

> > could possibly take a look and let me know what you think. Do

you

> > see a problem. To me her head looks a little elongated in the

> > back...kind of like the cone head shape of a newborn baby. Let

me

> > know what you think. I was going to make an appointment with

> Cranial

> > Tech for a free consultation.

> >

> > Thanks in advance.

> > Deana

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Hi Deanna,

Welcome to the group. Mackenzie looks like a cutie from what I could

see. :-) I see what you're seeing. I think you should take her to

Cranial Tech for a free evaluation. You will get an honest opinion on

Mackenzie's plagio. Where are you located? We probably have a member

that has used or is using the CT you'll be going to. Keep us posted.

>

> Hello Everyone

>

> I am new to this board...but from what I have seen so far it seems

> great! Everyone if very supportive. I posted a few pictures of my

> daughters head in a folder called MackenzieH...I was wondering if

you

> could possibly take a look and let me know what you think. Do you

> see a problem. To me her head looks a little elongated in the

> back...kind of like the cone head shape of a newborn baby. Let me

> know what you think. I was going to make an appointment with

Cranial

> Tech for a free consultation.

>

> Thanks in advance.

> Deana

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I live in Highland, CA. Thanks for looking and for the info.

Would you believe that I took her to one doctor that told me he would

be more worried about it if she was a boy. That girls have long hair

that covers this type of thing up and if she is unhappy with the

shape of her head later in life she could always have surgery. That

is when I decided that I should take her directly to Cranial Tech in

San Diego. I will call first thing Monday morning and get an

appointment.

Deana

> >

> > Hello Everyone

> >

> > I am new to this board...but from what I have seen so far it

seems

> > great! Everyone if very supportive. I posted a few pictures of

my

> > daughters head in a folder called MackenzieH...I was wondering if

> you

> > could possibly take a look and let me know what you think. Do

you

> > see a problem. To me her head looks a little elongated in the

> > back...kind of like the cone head shape of a newborn baby. Let

me

> > know what you think. I was going to make an appointment with

> Cranial

> > Tech for a free consultation.

> >

> > Thanks in advance.

> > Deana

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Hi Deanna,

Yes, I believe it! It's sad that in this day and age, with plagio

being the epidemic it is that peds still aren't educated about it.

Please let us know how you make out at CT. We do have members that

have used the San Diego, CT they all rave about it.

> >

> > Hi Deanna,

> > Welcome to the group. Mackenzie looks like a cutie from what I

> could

> > see. :-) I see what you're seeing. I think you should take her to

> > Cranial Tech for a free evaluation. You will get an honest

opinion

> on

> > Mackenzie's plagio. Where are you located? We probably have a

> member

> > that has used or is using the CT you'll be going to. Keep us

posted.

> >

> > --- In Plagiocephaly , " Deana " <cdhagar@p...>

wrote:

> > >

> > > Hello Everyone

> > >

> > > I am new to this board...but from what I have seen so far it

> seems

> > > great! Everyone if very supportive. I posted a few pictures

of

> my

> > > daughters head in a folder called MackenzieH...I was wondering

if

> > you

> > > could possibly take a look and let me know what you think. Do

> you

> > > see a problem. To me her head looks a little elongated in the

> > > back...kind of like the cone head shape of a newborn baby. Let

> me

> > > know what you think. I was going to make an appointment with

> > Cranial

> > > Tech for a free consultation.

> > >

> > > Thanks in advance.

> > > Deana

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Hi Deana

Welcome to the group. Mackenzie is a doll, thanks for sharing the

pictures. I do see the area of consern, and think it is a good idea

to have her evaluated. Let us know what they say.

Sandy Willow's Mom

Cranio Germany Grad

Torticollis resolved

http://www.geocities.com/samipa74/Willow_Lanette.html

>

> Hello Everyone

>

> I am new to this board...but from what I have seen so far it seems

> great! Everyone if very supportive. I posted a few pictures of

my

> daughters head in a folder called MackenzieH...I was wondering if

you

> could possibly take a look and let me know what you think. Do you

> see a problem. To me her head looks a little elongated in the

> back...kind of like the cone head shape of a newborn baby. Let me

> know what you think. I was going to make an appointment with

Cranial

> Tech for a free consultation.

>

> Thanks in advance.

> Deana

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I see you have already had great input. Welcome to the group! Mackenzie is adorable!!! Thank you for sharing her photos!!

Christy - mom to Kennedy

Plagio/brachy/tort

DOC band 11/23/04 - CT Dallas, TX

Tulsa, OKDeana <cdhagar@...> wrote:

Hello EveryoneI am new to this board...but from what I have seen so far it seems great! Everyone if very supportive. I posted a few pictures of my daughters head in a folder called MackenzieH...I was wondering if you could possibly take a look and let me know what you think. Do you see a problem. To me her head looks a little elongated in the back...kind of like the cone head shape of a newborn baby. Let me know what you think. I was going to make an appointment with Cranial Tech for a free consultation.Thanks in advance.DeanaFor more plagio info

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Hi Deana....I just checked out your dd's pics. She's a cutie. I do

see the elongated shape at the back so you are doing a good thing by

going to CT for the evaluation. Please let us know what they say.

Becky, mom to , repo grad in Pgh, PA

>

> Hello Everyone

>

> I am new to this board...but from what I have seen so far it seems

> great! Everyone if very supportive. I posted a few pictures of

my

> daughters head in a folder called MackenzieH...I was wondering if

you

> could possibly take a look and let me know what you think. Do you

> see a problem. To me her head looks a little elongated in the

> back...kind of like the cone head shape of a newborn baby. Let me

> know what you think. I was going to make an appointment with

Cranial

> Tech for a free consultation.

>

> Thanks in advance.

> Deana

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Hi Deana,

Welcome to the gorup. Mackenzie is a cutie! How old is she? What does your ped say? Did he/she refer you to Cranial Tech or are you going on your own. A lot of parents have to go on their own which just sucks. Which CT? Maybe we have someone in your area that can share experiences. I see the cone shape you are talking about. Has it always been that shape or have you noticed it getting worse. I can't really tell from the pictures but does it come to a point (for lack of a better word) in the back of the head? With na we saw the same head shape at birth and it just never got better before she was banded. Keep us posted.

mom to na

DOC Grad 2/04

Tort Resolved

South Carolina

www.thefilyaws.comDeana <cdhagar@...> wrote:

Hello EveryoneI am new to this board...but from what I have seen so far it seems great! Everyone if very supportive. I posted a few pictures of my daughters head in a folder called MackenzieH...I was wondering if you could possibly take a look and let me know what you think. Do you see a problem. To me her head looks a little elongated in the back...kind of like the cone head shape of a newborn baby. Let me know what you think. I was going to make an appointment with Cranial Tech for a free consultation.Thanks in advance.DeanaFor more plagio info

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Thank you so much for looking! Mackenzie is 8 months old..but she

was 6 weeks premature wich makes her adjusted age 6 1/2 months. My

ped agrees that there is a problem and he referred me to a

neurosurgen. The neurosurgen said that he did not really see a

problem...that he would be more concerned if she was a boy. He said

that she would outgrow it...her hair would cover it...and if she was

not happy when she was older she could always have surgery. That is

what made me want to contact CT. We will be contacting the San Diego

office. Yes when she was born she had that shape to her head. She

went to the head down position 2 months before she was born and never

moved from it. Her head has never gotten any better. Yes her head

is elongated and it does kind of come to a point in the back.

I am going to call CT tomorrow to see about a consultation. I will

keep you posted.

>

>

> Hello Everyone

>

> I am new to this board...but from what I have seen so far it seems

> great! Everyone if very supportive. I posted a few pictures of my

> daughters head in a folder called MackenzieH...I was wondering if

you

> could possibly take a look and let me know what you think. Do you

> see a problem. To me her head looks a little elongated in the

> back...kind of like the cone head shape of a newborn baby. Let me

> know what you think. I was going to make an appointment with

Cranial

> Tech for a free consultation.

>

> Thanks in advance.

> Deana

>

>

>

>

>

> For more plagio info

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Hi Deana

It sounds like you are doing exactly the right thing. I can't

believe what your neurosurgeon said to be honest. i'm shocked. I

can't think why it is ok for girls to have plagio and not boys, they

still want to tie their hair back, wear glasses (with misaligned

ears this is a problem) and wear cycle helmets. And those are just

the cosmetic issues! Secondly, I can't believe he would suggest

surgery. It is an absolute last resort for when other non-invasive

interventions (such as the DOCband) have failed..not a first line

treatment if it doens't grow out. A friend of mine who is a GP told

me never to ask a surgeon what to do, they always say have surgery

and in this instance, that's what happened!

YOu will be in good hands at CT. Rest assured there is a long-term

non-invasive drug free treatment that doesn't involve anasthetics

(the band which will be able to help your daughter. Let us know what

they say.

Good luck

Hannah (mum to Lucia, London, UK)

Cranio grad

> >

> >

> > Hello Everyone

> >

> > I am new to this board...but from what I have seen so far it

seems

> > great! Everyone if very supportive. I posted a few pictures of

my

> > daughters head in a folder called MackenzieH...I was wondering

if

> you

> > could possibly take a look and let me know what you think. Do

you

> > see a problem. To me her head looks a little elongated in the

> > back...kind of like the cone head shape of a newborn baby. Let

me

> > know what you think. I was going to make an appointment with

> Cranial

> > Tech for a free consultation.

> >

> > Thanks in advance.

> > Deana

> >

> >

> >

> >

> >

> > For more plagio info

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Hi Deana! I'm so glad that you found us. MacKenzie is such a cutie!

It looks like she loves her baths. :-) I too see what you are

talking about. That's great that you are going for a free

evaluation. It can't hurt. Please let us know what they say. You

are smart to be so pro-active about this and to be doing some

research about it. Good luck! I'm also happy to hear that you are

near a CT.

Sue

Colin F., 16 mos.

STARband grad 9/04

>

> Hello Everyone

>

> I am new to this board...but from what I have seen so far it seems

> great! Everyone if very supportive. I posted a few pictures of my

> daughters head in a folder called MackenzieH...I was wondering if

you

> could possibly take a look and let me know what you think. Do you

> see a problem. To me her head looks a little elongated in the

> back...kind of like the cone head shape of a newborn baby. Let me

> know what you think. I was going to make an appointment with

Cranial

> Tech for a free consultation.

>

> Thanks in advance.

> Deana

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  • 3 years later...
Guest guest

I just sat and typed the whiniest post. Thank God for the delete

button. I don't want to whine. This is life...Hasimoto's, CFS, and

Restless Legs Syndrome. Some days I feel crazy, some days so weak and

exhausted I can hardly function. Some days are great. I am taking

Echinachea. I heard it can help with the CFS. I have also been told

Kelp will help with the thyroid issue. I am looking for friends who

understand, tips, humorous stories, survival strategies, secrets to

success and just a place to go where people know what I " m talking

about. Thanks for the time, talk to ya all later. Dani

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  • 6 months later...

Welcome andra!

I have someone helping to clean up my too long " new member 101 "

archive -but until then -here's some starter info to help!

Below is a new member archive that keeps it simple on what to know to

start.

Re: Hi! New and wondering about apraxia.

Hi Mrs Laurie and welcome!

Your son sounds like he has some oral apraxia which would of course

need to be confirmed by professionals. If oral apraxia is present

together with your child's delay he should at least be diagnosed

as " suspected apraxia " and appropriate therapy should be provided.

He is entitled by federal law to a free and appropriate public

education (FAPE) in the least restrictive environment (LRE) which

means that if 5 days of one on one speech therapy is appropriate for

him then that's what he should receive. What type of speech therapy

is he receiving from the school right now when you say " some " ?

Below is a very long archive to help -please know that you don't have

to understand it all at once -we're here as a group to help!

Thanks for sharing. This group has from the start been a group

that's made up of parents and professionals who care for children

with many types of speech and/or language delays and/or disorders.

There are parents here for example with undiagnosed " late talkers "

and we just have not heard from them in awhile. It's actually a

really good thing when there is a mix of us to share because we all

learn from each other as many diagnoses can overlap -or down the road

we learn that our child does have co diagnosis.

While this group is open to parents of all children with

communication impairments -including hearing impaired, autistic etc.

it wasn't that all that posted recently had a child with autism, or

autism and apraxia -but because of society focus on autism -many here

started following an autism approach -including ABA in some cases!

That's understandable if the much more basic approach to apraxia -ST

and OT and EFAs were tried first and didn't work -but some were

trying that to start.

The overwhelming majority (if you check the archives) have success

with the basic approach to apraxia.

On the other hand- most of us are dealing with more than verbal

apraxia.we just don't know that when our child is 2 -and we learn

through professionals and observations as they continue to grow and

more and more is expected of them. This is also why it's important

to take your child for a neurodevelopmental medical exam when your

child is suspected of apraxia to confirm or rule out other diagnosis

such as sensory integration dysfunction etc. The earlier you know -

the sooner to start appropriate therapies to get them up to speed by

kindergarten.

Don't let it overwhelm you -perhaps we aren't meant to know more

than what we have to know at each stage. We'll be here to help along

the way. It's OK to have any type of emotion when we find out our

child has more than a simple delay -or " more " than " just " verbal

apraxia. And it's OK to be completely overwhelmed and saddened to

find out your child has apraxia. And as I was one of those parents

it's never " just " apraxia when you find out!!!

It's OK to be upset " just " because your child is a " late talker " too!

Please know that I too believed Tanner to just have apraxia and have

my first message posted to a grouplist about that below.but down the

road found out he had a few other things we needed to help him

address. The incredible news is that the majority of our children if

you check history are up to speed to be mainstreamed by kindergarten-

and of course many have learned with communication impaired children

that it's best to start kindergarten at 6 vs. 5 to give them that one

extra year of therapy and developmental time.

If you have questions after reading the following please share them.

This group has always been a wealth of information for all of us, no

matter how long we've been here.

Below is a new member archived message to hopefully answer more of

your questions for now (did you read The Late Talker yet?) For updated

information on fish oils and vitamin E and more - please visit the

links section here

/links

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

http://www.cherab.org/information/speechlanguage/oralapraxia.html

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

http://contemporarypediatrics.modernmedicine.com/radio_peds4

Actual article (where you can read it for free)

http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

There are also many activities parents can do at home with their

child to

promote the development of speech. These are detailed in the Guide

for Parents

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1363\

15.

This guide was written by

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lol-what she said!

Welcome to the group. You will find a lot of support & helpful information

here.

On Tue, Oct 21, 2008 at 10:44 PM, kiddietalk <kiddietalk@...> wrote:

> Welcome andra!

>

> I have someone helping to clean up my too long " new member 101 "

> archive -but until then -here's some starter info to help!

>

> Below is a new member archive that keeps it simple on what to know to

> start.

>

> Re: Hi! New and wondering about apraxia.

>

> Hi Mrs Laurie and welcome!

>

> Your son sounds like he has some oral apraxia which would of course

> need to be confirmed by professionals. If oral apraxia is present

> together with your child's delay he should at least be diagnosed

> as " suspected apraxia " and appropriate therapy should be provided.

> He is entitled by federal law to a free and appropriate public

> education (FAPE) in the least restrictive environment (LRE) which

> means that if 5 days of one on one speech therapy is appropriate for

> him then that's what he should receive. What type of speech therapy

> is he receiving from the school right now when you say " some " ?

>

> Below is a very long archive to help -please know that you don't have

> to understand it all at once -we're here as a group to help!

>

> Thanks for sharing. This group has from the start been a group

> that's made up of parents and professionals who care for children

> with many types of speech and/or language delays and/or disorders.

> There are parents here for example with undiagnosed " late talkers "

> and we just have not heard from them in awhile. It's actually a

> really good thing when there is a mix of us to share because we all

> learn from each other as many diagnoses can overlap -or down the road

> we learn that our child does have co diagnosis.

>

> While this group is open to parents of all children with

> communication impairments -including hearing impaired, autistic etc.

> it wasn't that all that posted recently had a child with autism, or

> autism and apraxia -but because of society focus on autism -many here

> started following an autism approach -including ABA in some cases!

> That's understandable if the much more basic approach to apraxia -ST

> and OT and EFAs were tried first and didn't work -but some were

> trying that to start.

>

> The overwhelming majority (if you check the archives) have success

> with the basic approach to apraxia.

>

> On the other hand- most of us are dealing with more than verbal

> apraxia.we just don't know that when our child is 2 -and we learn

> through professionals and observations as they continue to grow and

> more and more is expected of them. This is also why it's important

> to take your child for a neurodevelopmental medical exam when your

> child is suspected of apraxia to confirm or rule out other diagnosis

> such as sensory integration dysfunction etc. The earlier you know -

> the sooner to start appropriate therapies to get them up to speed by

> kindergarten.

>

> Don't let it overwhelm you -perhaps we aren't meant to know more

> than what we have to know at each stage. We'll be here to help along

> the way. It's OK to have any type of emotion when we find out our

> child has more than a simple delay -or " more " than " just " verbal

> apraxia. And it's OK to be completely overwhelmed and saddened to

> find out your child has apraxia. And as I was one of those parents

> it's never " just " apraxia when you find out!!!

>

> It's OK to be upset " just " because your child is a " late talker " too!

>

> Please know that I too believed Tanner to just have apraxia and have

> my first message posted to a grouplist about that below.but down the

> road found out he had a few other things we needed to help him

> address. The incredible news is that the majority of our children if

> you check history are up to speed to be mainstreamed by kindergarten-

> and of course many have learned with communication impaired children

> that it's best to start kindergarten at 6 vs. 5 to give them that one

> extra year of therapy and developmental time.

>

> If you have questions after reading the following please share them.

> This group has always been a wealth of information for all of us, no

> matter how long we've been here.

>

> Below is a new member archived message to hopefully answer more of

> your questions for now (did you read The Late Talker yet?) For updated

> information on fish oils and vitamin E and more - please visit the

> links section here

> /links

>

> What type of apraxic like speech behaviors are you seeing that makes

> you and the SLP suspect your child has apraxia vs. a simple delay in

> speech? Is your child talking at all yet? At your child's age -

> without speech, it's difficult to diagnose verbal apraxia -they

> could " suspect " verbal apraxia and begin treatment just in case,

> which wouldn't hurt your child if he ended up just having a simple

> delay. Just a few questions before we could provide more accurate

> answers:

>

> Does your child have signs of oral apraxia? (for example, can he on

> command smile, imitate funny faces, blow bubbles...if you put peanut

> butter anywhere around his mouth can he lick it off no matter where

> it is?)

> http://www.cherab.org/information/speechlanguage/oralapraxia.html

>

> Does your child have any neurological " soft signs " such as hypotonia

> or sensory integration dysfunction?

>

> http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

>

> Who else evaluated your child? Was it only the SLP through your

> town school or was he also in Early Intervention through the state?

> (birth to three) Was he evaluated by both a speech pathologist as

> well as an occupational therapist? Was/were they knowledgeable

> about apraxia? (If your child wasn't diagnosed by an occupational

> therapist as well and professionals suspect apraxia -I highly

> recommend you request that too either through both the school as

> well as private through insurance for many reasons)

>

> To answer any questions you may have about taking your child to see a

> neurodevelopmental MD if he has not yet been to one and apraxia is

> suspected... in one word - " Yes!!! " I would have your child diagnosed

> (private) by a neurodevelopmental medical doctor (developmental

> pediatrician or pediatric neurologist) who is knowledgeable about

> apraxia and other neurologically based multi-faceted communication

> impairments for numerous reasons. Reasons include (but not limited

> to)

>

> *having a " hero " on the outside of the school who can assist in a

> therapeutic plan and oversee your child's development over the years

> *advocacy support with the insurance company

> * ruling out or confirming any neurological soft signs or any other

> reasons for the delay in speech

> *help those that ask " why isn't he talking yet " understand this is a

> medical condition -and has nothing to do with your child's cognitive

> ability. (if in your child's case it doesn't. Apraxia in itself

> does not affect a child's cognitive ability -and speaking early or

> late is no indication of a child's intelligence. Also contrary to

> popular belief -most who have speech impairments have average to

> above average intelligence)

>

> Here's an article written by Neurodevelopmental Pediatrician Dr.

> Marilyn Agin that was featured as a cover article in Contemporary

> Pediatrics -a trade magazine for hundreds of thousands of pediatric

> medical professionals across the US. (I wrote the parent guide)

>

> " The " late talker " -when silence isn't golden

> Not all children with delayed speech are " little Einsteins " or garden

> variety " late bloomers. " Some have a speech-language disorder that

> will persist unless warning signs are recognized and intervention

> comes early. Includes a Guide for Parents. "

>

> Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

> http://contemporarypediatrics.modernmedicine.com/radio_peds4

>

> Actual article (where you can read it for free)

>

> http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

>

> There are also many activities parents can do at home with their

> child to

> promote the development of speech. These are detailed in the Guide

> for Parents

>

>

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1363\

15.

>

> This guide was written by

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