New here...

[Guest guest]

Barbara, you are very welcome. I need to post new pictures!!! I owe all my info to HRH and the wonderful parents on this board. You will love it here.

Shelliecanthang4nutn@... wrote:

<<<If I could go back again I would have casted her first, skipped the fusions (so she could grow more) and then done the VEPTR. I would try any other option before pursuing something as final as fusion. Just my opinion. I'm sure others here on the group will have more info to add. Welcome to the group.

Thank you Shellie. The site was very informative and I printed out some info and also bookmarked the site. I am definately going to ask about casting, perhaps Sydney will be a candidate for that. I am really not one to rush into surgery, especially at this young age. BTW, your daughter is lovely!Barbara

__________________________________________________

[Guest guest]

If Sydney needs something removeable, the casts might not be the way. As far as surgery goes, the VEPTR is by far the best option. On the site I sent there is a page listing all the hospitals currently doing the procedure. I have written info on it that we received with our discharge papers if you would like a copy. Email me privately with your address and I'd be happy to make copies and send them out. canthang4nutn@... wrote:

<><<<Hi, I live here in San Diego and I also take my son to the Children's hospital. He was diagnsed with scoliosis about a month or so ago and they have been great with him.

Hi . Thank you so much. We have just recently started seeing Dr. Newton, so I'm so glad to hear he is one of the best. We had a brace for quite some time, but the brace was just awful for our situation. Our daughter has seizures every day, so every time she has one we have to take it off, and every time I have to change her we have to take it off as well. We have had it cut 3 times but it is still not working out. In fact, Dr. Newton said the brace would not keep her curve from getting worse. Hoping we can prolong the inevitable some way! Barbara

__________________________________________________

[Guest guest]

Hi Barbara,

Being no expert, I will probably muddle this up, but I have nurses in my home for Moriah who pass along information to me from time to time. Apparently there is a diet that might help reduce seizures. The search word would be Ketogenic Diet. Try Adam's Story also. Apparently one of my nurses previously worked for someone who has a CP child about your daughter's age and has a feeding tube. They tried this and it greatly reduced the childs seizures. I have no idea about it, but I didn't want to sit on the information on the off chance that it is something that could help your daughter. Let me know if this helps. :0)

ShellieShellie Grant <shelliegrant@...> wrote:

HI Barbara,

I have no idea if casting is an option for you, but definitely something to research. My daughter Moriah, has had several surgeries for her scoliosis. Her story is at www.infantilescoliosis.org. We have had fusions and most recently the VEPTR (Vertical Expandable Prosthetic Titanium Rib) implants.(www.veptr.com). If I could go back again I would have casted her first, skipped the fusions (so she could grow more) and then done the VEPTR. I would try any other option before pursuing something as final as fusion. Just my opinion. I'm sure others here on the group will have more info to add. Welcome to the group.

Shellie Grantcanthang4nutn@... wrote:

Hello. I am new to your group (and I hope I am in the right place). My 7-year old daughter Sydney has cerebral palsey and seizures. She is also severely delayed in all areas due to a birth injury. Recently she was diagnosed with scoliosis (and, now, a hip problem as well). What her doctor is telling us, even though she is too young for surgery, her spine curve is at 70 degrees, therefore, he wants to fuse the bottom of her spine, and then, later in another 3 years or so, do the top. My husband and I are trying desperately to find alternative treatments to surgery, especially at this young age, at least if nothing else, to prolong surgery. I have heard of Feldenkrais therapy, however I have no clue how effective it is, plus we live in Hemet, California, so we don't have a lot of options out here. We drive to San Diego Children's to see her ortho.

Anywho, I don't want to bore any of you as I don't even know you all yet - lol, plus I should get to work, but if anyone has any ideas of how to position her to prolong any further curve, I would certainly appreciate it! I promise I won't get in the way much, and I hope to hear from you. Thank you so much for listening.

Barbara (mom to Sydney & )

__________________________________________________

[Guest guest]

Wow, Barbara, I wish I had read this

before responding to Deborah’s email first. Please read my previous response because

I do talk about the Feldenkrais method, which I have found to be exceptionally

helpful for children with birth trauma. California is the MECCA for the Feldenkrais method and there are many practitioners who

are exceptional with children.

Please contact my Feldenkrais instructor Beringer,

who lives in San

Diego. Her phone numbers are 619-220-8776 and

510-540-7600 (Berkeley, CA where I will see her next week for training). Her email address is ebethber@.... She may not be able to work with Sydney but could recommend someone nearby. The Feldenkrais Guild also has a website

with lot of information, so please check it out at www.feldenkrais.com.

Also, check out Dr. Behrooz

Akbarnia (www.orthodoc.aaos.org/akbarnia/)

who is in San

Diego. He is an orthopedic surgeon who

specializes in scoliosis correction (surgical). We communicated with him via mail,

sending x-rays for his review, although I never spoke with him directly.

Don’t feel that you are boring

anyone on this site. There is a

wealth of information and experience to be had and I think we’d all love

to bring what we can to help each other out. The casting seems like a very viable

option and there seems to be some folks out there doing a good and effective

job, so take a close look here too.

Regards,

Esther Foss (Zoe’s

Mom)

Re:

New here...

Hello. I am new to your group

(and I hope I am in the right place). My 7-year old daughter Sydney

has cerebral palsey and seizures. She is also severely delayed in all

areas due to a birth injury. Recently she was diagnosed with scoliosis

(and, now, a hip problem as well). What her doctor is telling us,

even though she is too young for surgery, her spine curve is at 70 degrees,

therefore, he wants to fuse the bottom of her spine, and then, later in another

3 years or so, do the top. My husband and I are trying desperately to

find alternative treatments to surgery, especially at this young age, at

least if nothing else, to prolong surgery. I have heard of Feldenkrais

therapy, however I have no clue how effective it is, plus we live in Hemet,

California, so we don't have a lot of options out here. We drive to San

Diego Children's to see her ortho.

Anywho, I don't want to bore any of

you as I don't even know you all yet - lol, plus I should get to work, but

if anyone has any ideas of how to position her to prolong any further curve, I

would certainly appreciate it! I promise I won't get in the way much, and

I hope to hear from you. Thank you so much for listening.

Barbara (mom to Sydney & )

[Guest guest]

<<< I wish I had read this before responding to Deborah’s email first. Please read my previous response because I do talk about the Feldenkrais method, which I have found to be exceptionally helpful for children with birth trauma. California is the MECCA for the

Thank you Esther. First, I want to apologize to everyone for coming on here new and not being able to spend time answering everyone. This is such a wonderful list, but I'm on two others, (one of which generates about 80-100 posts a day), so between working and everything else I'm barely keeping up - lol. I really appreciate the info on Feldenkrais. It's something I am desperately wanting to try. I will definately contact as SD is only about 1 1/2-2 hours from me.

Thank you again! I will let you know when I get in touch with someone.

Barbara

[Guest guest]

<<< I need to post new pictures!!! I owe all my info to HRH and the wonderful parents on this board. You will love it here.

Hi Shellie. Thank you so much. I can tell this is a wonderful list for both support and information. I am on another one for seizures and the keto diet, and the women are terrific too, I doubt we would have made it this far without them. In fact, we met at the beach last year and hope to make it an "annual" event. It really helps to have someone to talk to who understands.

Barbara

[Guest guest]

Hi and welcome!

You are in the right place to search for more answers to help your

precious child. Since your child is just 2 there is the possibility

that she has just a simple delay in speech, but no matter what

essentially non-verbal at 2 means she is qualified for EI services.

Since you are a military family I want to put you in touch with

Tricia Morin from NC morinfamily4@... morinfamily4 at

nc.rr.com Tricia runs the military parents support group (since

she knows all about therapy on military bases etc.) Tricia is also

one of the moderators here at CHERAB, and for Speechville.com, and

co founded SPEAK of Missouri (before she moved to NC!)

This link is about Tricia's son written by Hoffmann M.A., CCC-

SLP, President of the Missouri Speech Language Hearing Association

http://www.cherab.org/information/silentnomore.html

Just curious -where did you live while pregnant with your children,

and with your daughter? Perhaps some of the strategies we will

share to help your daughter will also help your older children.

On a side note, not all children with apraxia

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

have oral

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

global apraxia or other " soft signs "

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

Some apraxic children " just " have verbal apraxia...but that's just

not as typical. In most cases it's not that our children don't have

other issues when they have apraxia, it's just that we don't

recognize them. I have below an archived message where you can

read 'my' first message to a grouplist (and see how I say that

Tanner is completely normal other than he's a late talker) You

just don't know what you don't know!

Besides up till a certain age, even with a diagnosis, most of us

hold the thought of " just a late talker " in our hopes -but proceed

with early intervention therapy just in case.

Hope these archives help more and welcome!

Hurray Zimet!!!!

Thu Feb 3, 2005 2:38 pm

" kiddietalk " <kiddietalk@...>

Many of you may have read 's post and not given it a thought.

Just wanted to once again brag about Zimet, Tanner's Early

Intervention therapist. used to work for Early Intervention

out of Children's Specialized Hospital in Mountainside, NJ. She is

now working for EI in Georgia -and I'm hoping she moves a bit

further south (and ask her to all the time!) Tanner is so fortunate

that he got to work with early on but he almost didn't.

Because nobody but Glenn and I took Tanner's " not talking yet "

seriously -like pulling teeth to get him in speech therapy as it

says in The Late Talker book, Tanner who was nonverbal only had

about 6

weeks of Early Intervention therapy because nobody told us he

qualified for it. In fact we were told to " wait until he's three

and then if he's still not talking we'll send him for a speech and

hearing evaluation " by his pediatrician. Tanner passed all

developmental milestones on time or early, so as far as his doctor

and the world was concerned 'there was nothing to worry about'. Not

that Tanner wasn't in therapy privately which we got to pay out of

pocket for -Tanner had been in speech therapy from around the age of

2 for around 5 months, 2-3 x a week for 30-45 minute one on one

sessions with little change. he had more facial movements -but his

only word was " ma " or " mmm " . (see first post ever I sent to another

Internet grouplist below from 1999)

I was concerned -but deep down I kept believing that Tanner would

fool everyone and " just start talking " like everyone kept telling us

he would. So as lame as Tanner's EI goal is going to sound -the

magic age for me would be 3. That was the age everyone kept

bringing up. I figured at 3 he would just start. We only had about

6 weeks of Early Intervention. Our EI goal -in writing -which was

considered a good goal by all -was that " by the time Tanner was

three -he would point to a ball and say " ba " instead of " mmm " A

week or so prior to starting the EI therapy was when we started

using an EFA formula called Efalex (ProEFA wasn't even around then)

In the LCP Solution is said the first word was after 3 weeks -but

going over old emails -it was actually 2 weeks till " lellow " When

Tanner graduated from EI, -he was doing much more than saying " ba "

when pointing to a ball -he was saying " lellow " on command to any

yellow object he could find in the house or yard -and 20 other words

too including " purple " .!!! (I remember thinking he was like Bambi

when he first learned to talk and called everything " flower " )

is " the " professional that first had witnessed Tanner's

amazing surges when put on EFAs, and dramatic regression when taken

off (because he was going to be tested for the school program and I

thought he was doing too good to get the 1/1 therapy)

This was written about in The LCP Solution as the first

story under apraxia -read it online here (third story)

http://www.drstordy.com/stories.html

is also the one that encouraged me to start the support group

that became a nonprofit Children's Apraxia Network. She helped me

find a room to have meetings at the Children's Specialized Hospital

in Mountainside, NJ Our first meeting and just about all of them

were off the charts huge!

http://www.cherab.org/news/childrenshospitalarticle.html

http://www.cherab.org/information/dietaryeffects/StarLedgerarticle.html

And now there is CHERAB -and The Late Talker book -and

Speechville...thanks to Zimet who is just awesome, as we

credit her in The Late Talker (paperback edition)

is now helping as Robin just posted -how cool is

that?!

http://www.cherab.org/news/.html

Since there is much talk about newly diagnosed -misdiagnosis.

Please know there are many knowledgeable professionals out there -

like . Make sure your child is evaluated with an appropriate

diagnosis so that your child can receive appropriate therapies. And

for anyone who hasn't read it yet -below the following archive is my

first post ever. Tanner was a child diagnosed by many as " severe to

profound " apraxia. He is doing so amazing today -that he brings

hope that all can do this great. And you know the good news -most

are!

From: " kiddietalk " <kiddietalk@...>

Date: Tue Jan 6, 2004 9:56 pm

Subject: Re: Are these new developments typical of verbal apraxia?

Hi Kim!

In the early days many of us think our child is " just " a late talker-

as you can see in my first email to a grouplist below -I too thought

this of Tanner. Archives and emails are great because they give us

a timeline. When you archive Kim you will not only see how you

learned about new conditions faces -but how far he has come!

The thing about most apraxic (or communication impaired or delayed

for those who have children not diagnosed at all or as something

else) is that most have average to above average intelligence. In

other words kids like know what is expected of them and they

push themselves to do it. As they get older however, more and more

is expected of them independently, and when they can't keep up -they

begin to break down. This is why it is so important to see

knowledgeable neuroMDs when your child is young -and a good one can

diagnose young. And as I covered the other day -there are more

advanced neuroimaging techniques -so between that and genetic

testing -perhaps definitive diagnosis won't remain the crapshoot it

is today for too much longer.

I can tell you as a parent of an older apraxic child (Tanner turned

7 June 11th) that he was late to do a few things other than speech -

like potty train. Lots of parents here also stress out about late

potty training -and it was more than one neuroMD that told me that

Tanner's working hard on other issues -and may not have the muscle

control due to the hypotonia -so " give him a bit more time " Wise

advice -he potty trained late at four...but 20 years from now will

anyone care?

Please don't stress about a 5 year old who has sloppy handwriting.

Who knows where Tanner's self esteem and thus academic work and

social skills would be if he felt there was something wrong with him

because he took a bit longer to learn to write. A child in

kindergarten isn't expected to be sitting at a desk writing

sentences anyway...that isn't until first grade.

Tanner's handwriting started off early in the year horrible, but he

was just learning then. In kindergarten did I care that Tanner was

still learning how to draw lines and circles and hold a pencil

correctly? No -we and the professionals just kept working with

him.

Tanner transitioned out of OT at the end of kindergarten last year

at 6. Up till 6 years old he was still working on holding a pencil

correctly and writing with his OT due to his motor planning

problems. This was one of the main reasons that I also say there is

no way Tanner would have been ready to start kindergarten at 5 -he

would not have been ready for first grade at 6! Starting Tanner at

6 in kindergarten he was one of the top in the class...and no matter

how hard the spelling words and school assignments are each week -

Tanner is still getting straight A's in every subject -and now with

neat handwriting too.

Glenn and I never worried about Tanner catching up -he always does.

And many times Tanner doesn't just catch up -he passes others!

Tanner is a child that pushes himself and works hard to do what

others do not only when others ask him to -but because he so badly

wants to. The teacher told me early in the year that there was a

contest for children that knew how to read chapter books...this is

when Tanner was just learning to read books like Dr. Seuss Hop on

Pop. Tanner came home to me to tell me about this contest and how

much he wanted to do this. In speaking with his teacher -she too

knew how much he wanted to be part of this contest -but he wasn't

advanced enough of a reader. Tanner's going to be able to be part

of it next year -he's not yet quite up to chapter books -but coming

closer every week. And you know what -he may be behind a few others

in his advanced class -but he is doing far better than many in

public schools in first grade at this point.

Tanner takes pride in how neat his handwriting is now. I sometimes

can't even believe he wrote what he wrote it's so perfect!

As I always say in the long run is what matters. Nobody will care

twenty years from now if had neat handwriting in

preschool or it took till first or even second grade -you can always

teach those with sloppy handwriting like me to become doctors

(someone needs to write prescriptions) -or how to type. But if you

shatter a child's self esteem that's something that's hard to teach.

My suggestions other than to not worry about it? Buy things that

are fun that at the same time help with strength and motor

planning. Chunky pencils, markers and crayons are great. Don't

forget the pencil grips to help too. Clay is always

good not just for motor planning -but for working out feelings,

developing creativity. You can even get a PlayDoh Game Pen!

Last time I was in Toys R Us I think I even saw a game for younger

kids that had clay or playdoh. Or just make up your own games. Here

is a cute home game for " Playdough Pictionary " you can age down or

up.

http://lds.about.com/library/bl/games/blplaydough.htm

(the one I have may be too old for -but my boys (7 and 9)

love Cranium Cadoo where they get to make things with clay -act

things out -draw etc. Tanner is finally old enough to read some of

what he needs to with the magic glasses by himself!)

Buy arts and crafts things like SpectraColor Image Pad or even plain

old finger paints where he needs to use his fingers. And if you are

around to supervise -Shrinky Dinks is great for helping with fine

motor skills too -all the coloring and cutting and pasting etc.

Dr. Agin through her keen eye diagnosed Tanner when he was three

years old with sensory integration dysfunction, mild hypotonia, mild

motor planning issues in his body -and of course oral apraxia. His

verbal apraxia was not diagnosed until he was a bit older and

actually started to talk. Now that you know this -read the post

below which was prior to Tanner being diagnosed by Dr. Agin. In

hindsight the signs of other issues were there even when he was

younger -even the reasons why we called him " cherub boy " and " the

serious baby " -we just excused the signs away.

Here is proof you are not at all the only one that thought your child

was " just " a late talker!

Subject: Help for Tanner!

Date: Wed, 10 Mar 1999 01:52:42 -0500

From: & Glenn <shop-in-service@...>

apraxia-kids@...

References: 1

Other Parents:

Help! Our two year old son Tanner, who was born July 11, 1996, was

diagnosed today with apraxia after 4 months of speech therapy at a

hospital.

Unfortunately, before Tanner was 2, when my husband and I were

concerned about how quiet he was, our pediatrician wasn't. She

didn't see any reason for concern at that time since he was always

very bright and his comprehension was excellent. Undaunted, we

pushed to get a hearing and speech evaluation done anyway. It was

like pulling teeth! On a suggestion from Tanner's speech therapist

to get him evaluated, Tanner was also just recently accepted into the

early intervention program in our state of NJ. Tanner (whose knick

name is " Cherub Boy " since that is what he looks like) in every

other way, looks and acts normal (and has tested above average.)

Since Tanner has been going to speech therapy twice a week, he has

made great improvements on imitating basic simple sounds.

Unfortunately, other than some basic sounds he will now mimic if

prompted, he is not attempting to say words yet. For the most part

he is quiet and observant. If you say " 1, 2, 3, a, b, c " to Tanner,

he may try to imitate you, but it will be the inflection of the word

with the sound " mmmm " . Basically that and pointing is how Tanner

communicates all the time.

From the time he was a baby, and up until recently, he rarely showed

any facial expressions. Now, with the small amount of therapy he

has had, he noticeably smiles frequently and can for the first time

blow bubbles!

Around the age of one, Tanner had two episodes of Roseola with a

very high fever each time. Is there any evidence that a high fever

may cause apraxia?

Even though his hearing is normal, would a school for the deaf which

is able to teach speech to deaf children be useful to him in

addition to his other therapies?

We are new to the network and we were wondering if any other parents

or professionals in this network have any words of wisdom. We e-

mailed a local support group. It's comforting to know that this

condition has been resolved successfully by others. From what we've

read on the subject, most of the children at Tanner's age at least

try to talk, does Tanner's condition sound severe? Or, maybe a

better question, was your child, or those you work with, similar at

some point?

Just one other thing, how many e-mails can one expect to get a day

with being on the regular list?

Thanks in advance for being out there and sharing! Out of

curiosity, does

anyone know how many children have aprixia? Tanner's therapist said

it's not that common.

Best!

and Glenn "

See -so don't feel bad!

=====

(archive queen) Geng

President CHERAB Foundation

Communication Help, Education, Research, Apraxia Base

http://www.cherab.org

http://www.speech-express.com/boards

cherab

Co Founder Speechville

http://www.speechville.com

772-335-5135

" Help give our cherubs a smile and a voice "

>

> I just found this msg board after checking out " The Late Talker "

from

> the library. OMG- I read this book as soon as I got it and coldn't

> put it down. I don't know if my dd is apraixic but it sure would

> explain things!

>

> I have so many questions now though. A little bit about us- my dd

> will be 2 on July 5. She doesn't say a single word- no ma ma, no

> dada - not even a no. She points, she shakes her head, ect. She

> actually seems pretty good at communicating basic needs to us.

> She was VERY ill from 9-18 months with several surgeries. She had

> lymphatic masses growing in her chest and compressing her lungs.

She

> walked late but we all assumed it was because she was

tired/strained

> from the masses compressing her lungs and heart. Other than that-

she

> seems just fine- not many of the other issues. She can jump, she

can

> blow bubbles, she likes to lick people :0)so that's why I'm not

sure

> if this relates to her. All the speech issues seem to be exactly

what

> the book describes though.

> My dh is in the military and that has caused us some major issues

> with getting her care for her other medical problem so I imagine

it

> will be an uphill battle with Tricare for speech. We were in

> Nashville, TN and she saw specilists at Vanderbilt. They

transfered

> us to Houston, TX and said we would have the same specialists

> available at Texas Childrens, except that TCH doesn't accept

Tricare

> and they are HORRIBLE about out of net work referrals. Her case

> specifies a Pediatric ENT but they refuse to give us an out of

> network referral since there are general/adult ENT's in network. I

> can see it being a major issue for SLP.

> She is and has been seeing ECI since March. I was a little annoyed

> with that because they sent someone out twice a month to play with

> her after the initial evaluation- not an therapist of any kind.

Two

> weeks ago, the SLP came back out and they decided to add twice a

> month speech but we're waiting for them to have an opening.

> Everything I'm reading makes it seem like twice a month is not

going

> to be very beneficial though if she does have apraxia. I did make

an

> appointment with her pediatrician next week.

> My two older dd's had speech issues. My oldest (now 10) had 2

years

> of pre school speech and my middle dd is starting speech in the

fall

> with Kindergarten (that was an issue - trying to get TN to give

her

> services) but the speech issues with them were completely

different.

> They spoke- just not understandable to those outside the family.

It's

> been bugging me because my littlest seemed different and this

might

> be the answer!

> Sorry if I'm rambling- just a little excited after finding all

this

> info.

>

[Guest guest]

Hi . Welcome to the group. There are a lot of moms here who

can help you. I repo'ed my dd so I didn't have any insurance to

deal with so I am not going to be a lot of help for you. I just

wanted to say hi and bump your post to that it will catch the eye of

someone who can help you.

Becky

, repo grad

>

> Hi im megan im a newbie, i kind of jumped in without introducing

myself, were in virginia, i have four children my oldest is almost

8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but

stopped growing at 32 weeks, he was 5.2lbs at birth and spent 11

days in the NICU, he has had several problems so far spending 9

weeks off and on in the childrens hospital here and at johns hopkins

in maryland, we started OT for Tort. about three months ago and have

since been refered for plagio as well, we have been refered to have

a casting done on monday and were hoping our insurance will pick it

up but theres really no way to tell from what i understand its like

drawing straws and if your one of the lucky few your helmet will be

covered.

> is there anyone else aroudn here whos little one has other cronic

issues going on and is fighting with the ins. companies for

everything? were also battleing with them to cover the cost of the

RSV vacine they have denied us once and were apealing that now, any

thoughts would be hepful

>

>

[Guest guest]

,

My daughter has other problems as well besides plagio. She has torticollis, which has affected her whole body and delayed her in her motor skill development (esp gross motor). She was born with a split thumb, and she had surgery on June 22 to reconstruct it. She wore a cast for 5 weeks and now is in a splint for 6 weeks. She has had problems eating from birth.. she was diagnosed with dysphagia and also it was found that her epiglottis doesn't move at all (the flap in your throat that covers your windpipe when you eat and drink) so she silently aspirates when she eats (goes into her lungs). There is some other stuff too, but in a nutshell, yes we deal with all sorts of appts, doctors, therapy etc. It's tiring and overwhelming. She has seen far too much in her 9 months already medically. We have insurance struggles regularly. They did just cover Peyton's helmet, but they refuse to pay for the Neocate that Peyton and her twin need (prescription formula) because they both are allergic to milk protein and soy. Neocate costs $900/month to feed our girls. AETNA told me today to just pay for it out of pocket.. I told the lady, if I had that kind of money I wouldn't need friggen health insurance. I am constantly on their case, holding their hands, to make sure they stay on top of things and do their job. And I fight all the time with them over claims. It's so emotionally draining. I'm mentally exhausted... esp days like today.

I just stick with it, because I know it's their standard policy to outright deny a set amount of claims in hopes that people won't appeal. I also have my husband call and deal with some issues to give me a break. That helps a bit. For the DOCband, I found out ahead of time exactly what AETNA requires for authorization. I then went and got them what they asked for from TWO doctors.. and plus the measurements. CT's insurance person told me specifically what insurance companies like to hear in the letters of medical necessity ("repositioning for more than 2 months".. they will deny sometimes if the doctor doesn't mention specifically the word repositioning, and more than 2 months).. so I made sure the doctors wrote both those things.

HTH... I know dealing with multiple chronic issues is very taxing and hard. Big hugs to you and best wishes.

Colleen

Peyton (tort and plagio) and Haidyn, 9 months

Jensen 4 yrs.

new here...

Hi im megan im a newbie, i kind of jumped in without introducing myself, were in virginia, i have four children my oldest is almost 8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but stopped growing at 32 weeks, he was 5.2lbs at birth and spent 11 days in the NICU, he has had several problems so far spending 9 weeks off and on in the childrens hospital here and at johns hopkins in maryland, we started OT for Tort. about three months ago and have since been refered for plagio as well, we have been refered to have a casting done on monday and were hoping our insurance will pick it up but theres really no way to tell from what i understand its like drawing straws and if your one of the lucky few your helmet will be covered.

is there anyone else aroudn here whos little one has other cronic issues going on and is fighting with the ins. companies for everything? were also battleing with them to cover the cost of the RSV vacine they have denied us once and were apealing that now, any thoughts would be hepful

[Guest guest]

thanks colleen, it has been hard weve spent over ten weeks in the er since birth and he may be going back in this week as we suspect that the pnemonia might be back, just what i wanted to deal with im so over this.

its good to know there are other parents out there struggling every day, its hard when im out and about and see parents with little ones keanans age i feel like telling them how lucky they are to have a healthy baby and not have all of these concerns

megan

new here...

Hi im megan im a newbie, i kind of jumped in without introducing myself, were in virginia, i have four children my oldest is almost 8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but stopped growing at 32 weeks, he was 5.2lbs at birth and spent 11 days in the NICU, he has had several problems so far spending 9 weeks off and on in the childrens hospital here and at johns hopkins in maryland, we started OT for Tort. about three months ago and have since been refered for plagio as well, we have been refered to have a casting done on monday and were hoping our insurance will pick it up but theres really no way to tell from what i understand its like drawing straws and if your one of the lucky few your helmet will be covered.

is there anyone else aroudn here whos little one has other cronic issues going on and is fighting with the ins. companies for everything? were also battleing with them to cover the cost of the RSV vacine they have denied us once and were apealing that now, any thoughts would be hepful

[Guest guest]

You know it really frustrates me when I read through

all these posts. The insurance companies are so

corrupt. I don't know how much money we pay each

month for premiums, not to mentioned how much we have

paid in premiums for the past four years, and they

gripe about every penny. I am so frustrated. When my

husband and I decided to go with the band, we had it

already in our minds that we would pay out of pocket.

My orthotist said that he would handle all the paper

work, so that is fine, but I feel for those of you who

are struggling having to pay all these medical bills.

And even if the insurance paid half of the bill, I

would be happy, but I know they probably won't. The

last time I talked with my insurance, ironically, I

spoke to a woman whose child had the same problem.

She gave me some really good advice. I really hate

insurance companies. And to be honest, the medical

community in general has been a joke to me. I will

never trust another doctor as long as I live.

Especially when it comes to my children. I really

think the insurance companies are the ones who dictate

healthcare now, not the doctors.

--- <TouchOfCalm@...> wrote:

> thanks colleen, it has been hard weve spent over ten

> weeks in the er since birth and he may be going back

> in this week as we suspect that the pnemonia might

> be back, just what i wanted to deal with im so over

> this.

> its good to know there are other parents out there

> struggling every day, its hard when im out and about

> and see parents with little ones keanans age i feel

> like telling them how lucky they are to have a

> healthy baby and not have all of these concerns

> megan

> new here...

>

>

>

> Hi im megan im a newbie, i kind of jumped in

> without introducing myself, were in virginia, i have

> four children my oldest is almost 8, then 6, then 2

> and our baby Keanan, Keanan was born at 38 wks but

> stopped growing at 32 weeks, he was 5.2lbs at birth

> and spent 11 days in the NICU, he has had several

> problems so far spending 9 weeks off and on in the

> childrens hospital here and at johns hopkins in

> maryland, we started OT for Tort. about three months

> ago and have since been refered for plagio as well,

> we have been refered to have a casting done on

> monday and were hoping our insurance will pick it up

> but theres really no way to tell from what i

> understand its like drawing straws and if your one

> of the lucky few your helmet will be covered.

> is there anyone else aroudn here whos little one

> has other cronic issues going on and is fighting

> with the ins. companies for everything? were also

> battleing with them to cover the cost of the RSV

> vacine they have denied us once and were apealing

> that now, any thoughts would be hepful

>

>

>

>

__________________________________________________

[Guest guest]

You hit it on the nose, i couldnt agree more, i get so frustrated with the insurance companies. They are making a load of money off of the people who arent needing health care and then those of us who do are treated like were asking for the moon. Ive spent eight years paying for insurance for my other three children none of whom have needed it and now that i need it im trated like im being unreasonable.

UGh its so frustrating

megan

new here...> > > > Hi im megan im a newbie, i kind of jumped in> without introducing myself, were in virginia, i have> four children my oldest is almost 8, then 6, then 2> and our baby Keanan, Keanan was born at 38 wks but> stopped growing at 32 weeks, he was 5.2lbs at birth> and spent 11 days in the NICU, he has had several> problems so far spending 9 weeks off and on in the> childrens hospital here and at johns hopkins in> maryland, we started OT for Tort. about three months> ago and have since been refered for plagio as well,> we have been refered to have a casting done on> monday and were hoping our insurance will pick it up> but theres really no way to tell from what i> understand its like drawing straws and if your one> of the lucky few your helmet will be covered. > is there anyone else aroudn here whos little one> has other cronic issues going on and is fighting> with the ins. companies for everything? were also> battleing with them to cover the cost of the RSV> vacine they have denied us once and were apealing> that now, any thoughts would be hepful> > > > __________________________________________________

[Guest guest]

,

How is he doing this week? Does he have pneumonia?

Hoping and praying that he's okay and didn't have to be hospitalized!

Colleen

new here...

Hi im megan im a newbie, i kind of jumped in without introducing myself, were in virginia, i have four children my oldest is almost 8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but stopped growing at 32 weeks, he was 5.2lbs at birth and spent 11 days in the NICU, he has had several problems so far spending 9 weeks off and on in the childrens hospital here and at johns hopkins in maryland, we started OT for Tort. about three months ago and have since been refered for plagio as well, we have been refered to have a casting done on monday and were hoping our insurance will pick it up but theres really no way to tell from what i understand its like drawing straws and if your one of the lucky few your helmet will be covered.

is there anyone else aroudn here whos little one has other cronic issues going on and is fighting with the ins. companies for everything? were also battleing with them to cover the cost of the RSV vacine they have denied us once and were apealing that now, any thoughts would be hepful

[Guest guest]

Thanks Colleen, unfortunatly it did come back fourth time in six months, but they are letting us treat it at home this time, thank goodness its just so hard to have him in the hospital with three others at home needing mom. Its just been such an uphill battle i keep saying things have got to settle down soon, im sure they will but it just seems like its too much at times. We did have our casting appointment yesterday and it was just so emotional for me, my best friend went with me as we have three others who hubby had to be home for, one of which is autistic and needs one of us around pretty much full time. Its hard but i know somday we will look back and hardly remember these times

megan

new here...

Hi im megan im a newbie, i kind of jumped in without introducing myself, were in virginia, i have four children my oldest is almost 8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but stopped growing at 32 weeks, he was 5.2lbs at birth and spent 11 days in the NICU, he has had several problems so far spending 9 weeks off and on in the childrens hospital here and at johns hopkins in maryland, we started OT for Tort. about three months ago and have since been refered for plagio as well, we have been refered to have a casting done on monday and were hoping our insurance will pick it up but theres really no way to tell from what i understand its like drawing straws and if your one of the lucky few your helmet will be covered.

is there anyone else aroudn here whos little one has other cronic issues going on and is fighting with the ins. companies for everything? were also battleing with them to cover the cost of the RSV vacine they have denied us once and were apealing that now, any thoughts would be hepful

[Guest guest]

,

I have two boys both of whom have Autism.

Caleb is 6 and Lucas is 4. Feel free to write me off list. I know how hard it

can be and often you just want someone to listen who understands the battles we

face.

Thanks and have a great day,

aleyfamily@...

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of

Sent: Tuesday, August 08, 2006

9:23 PM

Plagiocephaly

Subject: Re: new here...

Thanks Colleen, unfortunatly it did come back fourth time in

six months, but they are letting us treat it at home this time, thank goodness

its just so hard to have him in the hospital with three others at home needing

mom. Its just been such an uphill battle i keep saying things have got to

settle down soon, im sure they will but it just seems like its too much at

times. We did have our casting appointment yesterday and it was just so

emotional for me, my best friend went with me as we have three others who

hubby had to be home for, one of which is autistic and needs one of us

around pretty much full time. Its hard but i know somday we will look back

and hardly remember these times

megan

new

here...

Hi im megan im a newbie, i kind of jumped in without

introducing myself, were in virginia, i have four children my oldest is almost

8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but stopped

growing at 32 weeks, he was 5.2lbs at birth and spent 11 days in the NICU, he

has had several problems so far spending 9 weeks off and on in the childrens

hospital here and at johns hopkins in maryland, we started OT for Tort. about

three months ago and have since been refered for plagio as well, we have been

refered to have a casting done on monday and were hoping our insurance will

pick it up but theres really no way to tell from what i understand its like

drawing straws and if your one of the lucky few your helmet will be covered.

is there anyone else aroudn here whos little one has other

cronic issues going on and is fighting with the ins. companies for everything?

were also battleing with them to cover the cost of the RSV vacine they have

denied us once and were apealing that now, any thoughts would be hepful

[Guest guest]

Thanks wow two boys i cant even imagine:) Lliam is such a handful i couldnt imagine two lliam will be seven in february he is high functioning but still behind as far as the social aspect is concerned, he has been really good about the baby taking up most of my time and attention as long as either me or my husband is here he does ok its when neither of us ware here when he has melt downs,

i love this little boy but boy is he alot of energy

megan

new here...

Hi im megan im a newbie, i kind of jumped in without introducing myself, were in virginia, i have four children my oldest is almost 8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but stopped growing at 32 weeks, he was 5.2lbs at birth and spent 11 days in the NICU, he has had several problems so far spending 9 weeks off and on in the childrens hospital here and at johns hopkins in maryland, we started OT for Tort. about three months ago and have since been refered for plagio as well, we have been refered to have a casting done on monday and were hoping our insurance will pick it up but theres really no way to tell from what i understand its like drawing straws and if your one of the lucky few your helmet will be covered.

is there anyone else aroudn here whos little one has other cronic issues going on and is fighting with the ins. companies for everything? were also battleing with them to cover the cost of the RSV vacine they have denied us once and were apealing that now, any thoughts would be hepful

[Guest guest]

Oh I'm so sorry that he's sick again. At least he can be home though, that's good. How did he do with the casting appointment? Did he tolerate it okay?

It sounds like you have so much on your plate to deal with at once. I admire your courage in seeking out treatment for the plagio with all the other issues you are juggling! I worked for a little under 7 years with autistic children, so I know a little bit of the challenge you face every day. BIG HUGS to you. I know it must be very overwhelming.

Let us know how it goes when he gets the helmet!

Colleen

new here...

Hi im megan im a newbie, i kind of jumped in without introducing myself, were in virginia, i have four children my oldest is almost 8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but stopped growing at 32 weeks, he was 5.2lbs at birth and spent 11 days in the NICU, he has had several problems so far spending 9 weeks off and on in the childrens hospital here and at johns hopkins in maryland, we started OT for Tort. about three months ago and have since been refered for plagio as well, we have been refered to have a casting done on monday and were hoping our insurance will pick it up but theres really no way to tell from what i understand its like drawing straws and if your one of the lucky few your helmet will be covered.

is there anyone else aroudn here whos little one has other cronic issues going on and is fighting with the ins. companies for everything? were also battleing with them to cover the cost of the RSV vacine they have denied us once and were apealing that now, any thoughts would be hepful

[Guest guest]

Thanks Colleen, the casting went better then i had expected but he did scream like crazy and it was terrible but i was much stronger then i thought i was going to be so i guess thats good:) he should get his helmet the early part of next week, im hesitant weither im going to start him right when i get it or else wait because we will be gone from thursday until sunday night and he will be with my mom, i would hate to have her have to deal with the transitioning of it ya know?

i cant wait though we are going with the older two on a four day cruise to the bahamas, my daughters dance group was asked to perform on the carnival sensation, luckly its already paid for in advance because we had no idea we were going to be going through such hard financial times and lord knows i would be backing out if i thought i could get our money back good thing i cant, we need this

megan

new here...

Hi im megan im a newbie, i kind of jumped in without introducing myself, were in virginia, i have four children my oldest is almost 8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but stopped growing at 32 weeks, he was 5.2lbs at birth and spent 11 days in the NICU, he has had several problems so far spending 9 weeks off and on in the childrens hospital here and at johns hopkins in maryland, we started OT for Tort. about three months ago and have since been refered for plagio as well, we have been refered to have a casting done on monday and were hoping our insurance will pick it up but theres really no way to tell from what i understand its like drawing straws and if your one of the lucky few your helmet will be covered.

is there anyone else aroudn here whos little one has other cronic issues going on and is fighting with the ins. companies for everything? were also battleing with them to cover the cost of the RSV vacine they have denied us once and were apealing that now, any thoughts would be hepful

[Guest guest]

In a message dated 8/9/06 5:33:09 PM, TouchOfCalm@... writes:

my daughters dance group was asked to perform on the carnival sensation

HOW FUN!!!!!!! Wish I could go on a cruise!!!!

With our helmet we had a "break in" period the ortho had Luli play with her helmet the 1st day, wear in for 1 hour in the am and 1 hour in the pm on day 2 - and so on until by day 7 or 8 she was wearing it 23 hours. If yours has you do that it would make it easier on your mom.

Maybe she could go w/ you the appt. so she could see how to put it on and take it off and feel more comfy w/ the whole thing?

JEN

Mommy to 4...and 1 more!!!!

Luli - Tort/Plagio - Hanger Band - CA

"Luli"

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

[Guest guest]

Wow! Hope you have a great time on the cruise! Sounds fun and definitely deserved and much needed )

Let us know how he does when he gets his helmet... hope the transition goes smoothly for him )

Colleen

Peyton (tort and plagio) and Haidyn, 9 months

Jensen 4 yrs

new here...

Hi im megan im a newbie, i kind of jumped in without introducing myself, were in virginia, i have four children my oldest is almost 8, then 6, then 2 and our baby Keanan, Keanan was born at 38 wks but stopped growing at 32 weeks, he was 5.2lbs at birth and spent 11 days in the NICU, he has had several problems so far spending 9 weeks off and on in the childrens hospital here and at johns hopkins in maryland, we started OT for Tort. about three months ago and have since been refered for plagio as well, we have been refered to have a casting done on monday and were hoping our insurance will pick it up but theres really no way to tell from what i understand its like drawing straws and if your one of the lucky few your helmet will be covered.

is there anyone else aroudn here whos little one has other cronic issues going on and is fighting with the ins. companies for everything? were also battleing with them to cover the cost of the RSV vacine they have denied us once and were apealing that now, any thoughts would be hepful

[Guest guest]

Photo E-mail

Play slideshow | Download images

Kaitlyn has obvious facial asymmetry but it wasn't until we looked at her in front of the mirror that it became apparent to us. I guess since we see her everyday you just don't realize that it is there. I would suggest standing in front of the mirror to see if there is any facial asymmetry. Everyone has some asymmetry but it is usually unnoticed even in front of the mirror.

Naomi

This is a picture taken in front of the mirror. Notice that the right side is smaller and below the left side.

New here...

Hi! I am a new member ~ My daughter just had her 6 month check up, and I told the Dr a concern I had of the back right side of the top of her head being a little more sticking up...well, ended up that was not the whole thing She had a very mild sticking out of her forehead above her right eye, and the back left side of her head at the bald spot had a protrusion...I hope I am making sense. Her Dr. said she thought it was a very mild case but still wants me to see a specialist. I go on 9-11 (awful date!!) I am scard, trying to get her to lay on the side that the protrusion is on at the back of her head...and it is working. She doesn't seem to me to have any facial characteristics... my question is if this is mild, would she need a "helmet"...on the cranial site I visited, I would guess she was a 1 or slightly less...out of 1 to 4 and the 4 was severe. Any help? advice? Suggestions? THANK YOU!! Pam<><

This MSN Photo E-mail slideshow will be available for 30 days.To share high quality pictures with your friends and family using MSN Photo E-mail, join MSN.

[Guest guest]

I know it is difficult and worrisome. But you are on

the right track in getting everything checked out.

Your baby is still young and correction (if needed)

can be really successfull. I understand how

stressfull it is as I (and many others) have gone

through the same thing. You are definitely not alone.

My little boy was just banded at 12 months and I am

hoping that we can correct his misshappen head. I

feel like even though he is older and the docs said

that banding would not help much, he is makeing

progress. Stay calm, okay! Again, you are on the

right track!

--- P Crowson <pammommy@...> wrote:

> Hi! I am a new member ~ My daughter just had her 6

> month check up, and I told the Dr a concern I had of

> the back right side of the top of her head being a

> little more sticking up...well, ended up that was

> not the whole thing She had a very mild sticking

> out of her forehead above her right eye, and the

> back left side of her head at the bald spot had a

> protrusion...I hope I am making sense. Her Dr. said

> she thought it was a very mild case but still wants

> me to see a specialist. I go on 9-11 (awful date!!)

> I am scard, trying to get her to lay on the side

> that the protrusion is on at the back of her

> head...and it is working. She doesn't seem to me to

> have any facial characteristics... my question is if

> this is mild, would she need a " helmet " ...on the

> cranial site I visited, I would guess she was a 1 or

> slightly less...out of 1 to 4 and the 4 was severe.

> Any help? advice? Suggestions? THANK YOU!!

> Pam<><

>

__________________________________________________

[Guest guest]

I never noticed a difference until I started taking

Armour thyroid. I was on Synthroid for 5 years and

felt no better. Once I started taking Armour,

increasing my dose little by little every 2-3 weeks, I

started feeling better.

--- Dana King <ca_brat_wi@...> wrote:

> Hi all... I had Hypothyroidism for a few years - but

> to be honest I've

> never really have taken the meds. I've just heard

> from someone that

> it can really make a difference. I tried once for a

> few weeks or so -

> noticed nothing so I just stopped.

>

> Any advice.

>

> Any stories?

>

> Can it help you sleep better? Can it help you lose

> weight?

>

> What have the meds done for you?

>

> I am on levothyroxine 75 mg. Will I really notice

> any difference?

>

> Dana

>

> homeschooling mommy in WI

>

>

>

>

__________________________________________________

[Guest guest]

just from my personal experience, a few weeks isnt enough time for the meds to really do their thing. It was a good 6 months before I started feeling human again. On 9/6/06, Dana King <ca_brat_wi@...> wrote:

Hi all... I had Hypothyroidism for a few years - but to be honest I've

never really have taken the meds. I've just heard from someone that

it can really make a difference. I tried once for a few weeks or so -

noticed nothing so I just stopped.

Any advice.

Any stories?

Can it help you sleep better? Can it help you lose weight?

What have the meds done for you?

I am on levothyroxine 75 mg. Will I really notice any difference?

Dana

homeschooling mommy in WI

-- Pam

[Guest guest]

Hi Dana, If you truly have hypothryoidism it is extremely important that you have treatment. Your internal organs need thyroid hormone to function properly and if there isn't enough, little by little they will start to shut down. I have had good luck with brand name Synthroid. I think the levothyroxine is the generic and I have actually found that those make me feel worse. I also had a friend on the generic and he asked his doctor to switch him to the brand name to see if it made a difference and he said it was like night and day and he felt like a new man. A lot of people seem to have good luck with Armour thyroid. I have never tried that. I was so sick by the time I was diagnosed that I am reluctant to experiment with anything new when I seem to be okay with the plan that I have. When you take thyroid medicine it's very

important to take it regularly at the same time every day, preferably on an empty stomach and don't skip any doses. I take mine first thing in the morning when my feet hit the floor, then I get ready for work and then have something to eat. I wish you much luck and hope you find the treatment that helps you feel better. Kind regards, BuffyB Dana King <ca_brat_wi@...> wrote: Hi all... I

had Hypothyroidism for a few years - but to be honest I'venever really have taken the meds. I've just heard from someone thatit can really make a difference. I tried once for a few weeks or so -noticed nothing so I just stopped. Any advice.Any stories? Can it help you sleep better? Can it help you lose weight? What have the meds done for you?I am on levothyroxine 75 mg. Will I really notice any difference?Danahomeschooling mommy in WI