new member

[Guest guest]

I won't go back to a chiropractor I stopped going when I did not notice

any improvement I went because I have awfu muscle spasms but I had to go

3 times a week and it was to expensive I think it ran around $50.00 a

week I had to pay after insurance and medicare paid. That is how I found

out I had osteoperosis and bone spurs on my spine and that my spine is

twisted. I just wish I could find something to make the pain stop the

Doctor I go to now gave me vicoden but it does not help at all I can't

take the arthritis drugs as they don't help and bother my stomach I am

suppose to be taking plaquenil but could not afford the Rx but will be

able to get it next week and then in Feb we will have a Rx card so then

I will be able to afford my meds.

Pamm

[Guest guest]

thank you paula, for forwarding my message...I guess I ddn't realize it wasn't

going to the group...i'm sorry to hear you've suffered from RA so long. it's

such a terrible thing to be sick especially trying to raise children...hope you

feel better with each day.

take care,

pat

ap-54 <paulap-54@...> wrote: Hi Pat. Welcome to our group. You

addressed this message so that only I could read it, so I forwarded it to the

group so everyone can respond to your questions. If you address your messages

to

everyone will be able to read it. I am a, one of the group moderators. I

have 4 children, a granddaughter and one grandchild on the way too! I also test

negative for RA. What we have is called sero negative RA. I was diagnosed

while in my early 20's, and now am 47. I'm on Enbrel. MTX, and Vioxx. It

helps, but my disease is still slowly progressing. I've had both knees replaced

and could use a few more new joints!

I'm glad you found us, but sorry you need us. I'm looking forward to getting to

know you.

a

Re: Welcome to

Hi my name is pat and i just turned 50..I have twin girls, a son, and 1

grandchild and one on the way. i'm looking forward to learning about these

illnessess we share.

thank you for your welcome. i've been told by my rhemuatoligist that I do have

early rheumatoid arthritis...even though the test came back as negative.

Because I have the deformity starting in my joints and everything happening on

left side of my body is same on right side. I also have osteoarthritis and

early osteoporis.

I am on didrocal for my bones and plaquenel for the rheumatoid...is anyone

familar with plaquenel and its negative affects on the body...because it's to

slow down the immune system, i worry about it...

what are your main compliants with rheumatoid arthritis? mine are fatigue,

weakness, pain, swelling, shortness of breath, it's so difficult to get up from

a chair when i've only been sitting there for a few min...and of course the

depression is very difficult to deal with.

thank you for listening..

pat

Moderator < -owner > wrote:

Hello,

Welcome to the RA-Support list. Please take a moment to review this message.

If you have been recently diagnosed, we want to help educate you about this

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we will do our best to help you locate any information. We have very few rules.

Please respect the opinions and beliefs of others. Problems should be directed

at the moderators, and we will do our best to rectify the problem.

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The List Owners & Moderators

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Pat - patlinda@...

- Matsumura_Clan@...

[Guest guest]

Hi Eileen and welcome to the group.

Your fears are normal and many here have shared those same feelings. The

fear, the guilt, the confusion, the second guessing, and on and on. It's hard

to believe people when they say that their baby adjusted to the helmet with

no problems at all, but it's true!! never cared for one moment that she

was wearing a helmet and believe me - she's a high maintenance child!! LOL

She slept in the very first night with not so much as a peep. Even if you

have to take it slow and build up to 23 hours a day gradually you will be

amazed at how quickly your baby will take to it. It's much, much harder on

the parents then on the baby and the best part is that the helmet does not

cause any pain or discomfort! True, baby is a little more sweaty at first as

his body adjusts to the new temperature, but that passes quickly.

Eight months is not too late to start. My daughter started at 9 months and we

received very good correction! I think you are doing the right thing and I

don't think you will regret your decision. Of course, it's easy to say " don't

worry " when I'm on the other end ( graduated 8 months ago!!), but truly,

it isn't nearly as hard as we mommies build it up to be!

Good luck and let us know how it goes in two weeks. You have come to the

right place for advice, suggestions, support and friendship - this group is

wonderful and we are here to support YOU! You can do it!

Marci (Mom to )

Oklahoma

[Guest guest]

Eileen:

Hi & welcome to our group You have the same feelings so many of

us in the group have had at one time or another.

You're wondering if it's a STARband or a DOCband.....if it is a

DOCband you would have gone to a Cranial Technologies location, you

would most likely know if it is in fact going to be a DOCband. If it

is a STARband, you would have had your son casted at one of your

local hospitals by an orthotist. You could also receive a locally

made helmet from a local hospital. A STARband has a " star " imprinted

somewhere on the band, that's how you can tell if it is a STARband.

Don't feel bad about not knowing.....beleive it or not, my daughter

was in a STARband for one month before I figured out that's what it

was.....for a short time I thought it was a DOCband . All the

information regarding helmets/bands can be so overwhelming - your son

also has tort so it's even more for you to worry about.

For your worries about how your son will react to his band - trust me

when I tell you most babies adjust just fine to the band. It's

really unbelievable just how well they go about their happy normal

little lives. It is quite rare for babies not to tolerate their

band. I also worried how my daughter would react to her band - I

heard all the other parents telling me they'd adjust just fine but I

didn't beleive them, but Abby slept just like always & was still very

happy. My daughter also rec'd her 1st band at 8 mos just before she

learned to crawl & walk. The band protected her head from many bumps

& bruises ;-). I had a very hard time adjusting to seeing Abby in

her band. I felt soooo bad for her - I shed many tears over it. I

slowly got used to it & actually thought she looked silly w/o her

band on!!!

I hope things go well with Adam's tort as well. I was lucky that my

daughter did not have tort., but so many of our members baby's

has/had tort..

I am assuming that Adam has already been casted for his band/helmet.

How did that go? That's the hardest part! The rest will be a piece

of cake

Again, I am happy you found our group. We all look forward to

getting to know you & Adam more over the next few mos.. Be sure you

let us know when his band is in & how he and you adjust.

Debbie Abby's mom DOCGrad

MI

> Hi

>

> I have been a member of the torticollis group for a little while.

My

> son was diagnosed with tort at 5 months. When he was 2 mths I

> mentioned to his peditrician that he had a flat spot on the back of

> his head but he said lets wait and check it at 4 mths. At 4 mths I

> mentioned it again and he sent me to a neurologist which took a

month

> to get an appointment. He sent us to physical therapy for the tort

> which was once a week but recently within the past 2 weeks upped to

3

> times a week from an orthopedic doc we just started seeing.

>

> I was scared of the helmet and because they never said his plagio

was

> severe I didn't put him in it. The doctor kept saying it is up to

> me. Two peditricians and the orthopedic didn't think it was that

> bad. Well now he is 8 mths old and we went back again this past

> Monday and as probably all of you know we are wortking againt time

so

> my husband and the doc still think it is a good idea to at least

try

> the helmet at this point hoping it will do some good. I agreed to

> it but I am so scared I'm going to make my baby so miserable. I

> can't imagine him sleeping in it without crying. Between his tort

> with is very noticeable and he has had a tough winter with

pneumonia

> and he is on his third ear infection now he maybe headed for tubes

in

> his ears I feel like I'm only going to be making his life harder.

I

> did read that someone as an adult had wished they had treatment

when

> they were younger to keep from being made fun of. Of course that

is

> the last thing I would want to happen to my son.

>

> He is also going to be getting a tot collar for his tort and when

he

> is wearing that we won't be able to wear his helmet. His helmet

will

> be ready in 2 weeks. I'm sooooooooo nervous about it. We are

hoping

> that in 3 mths his head shows some improvement.

>

> Sorry so long I'm confused about the docband or starband I'm not

sure

> what kind of helmet we are getting. Now I just sound very

uninformed.

>

> Eileen & Adam

[Guest guest]

Hi Eileen and Adam,

Welcome to the group! It's great that you are already a member of the torticollis group, they are a wonderful bunch and I learned so much from them when I learned my son was dx with tort at 2 mnths. It is so hard to keep on stretching, but take advantage of Adam's age, when they get older its so much harder to stretch them! It took us at least 8 months to say that we think is resolved, although his was severe tort and had the lump- but have patience, it will take some time- they say keep it monitored and work on it until they are 2! I know its frustrating because one day they look better, the next they may be wayyyy tilted- this is part of the process, have faith that it will get better with continued hard work.

Like your story, my ped thought the flat spot was mild, and pushed it off- even told us the tort made the ears look misaligned because his head was tilted. Long story short, we pushed for the DOC band at 5 months because we learned that his plagio was getting worse, and the facial asymmetry and ear misalignment was not an "optical illusion"- and time was of the essence. I felt so bad about it, here this poor child has had to undergo sedation, MRI's, pt, etc., and now a helmet! But honestly, believe Marci and Debbie and everyone when they tell you that most kids adjust very well to it. My son did not have any negative reaction, and I have read a few members started having their kids wear hats to get used to the idea of something on their head- a great idea!

You will probably adjust more slowly than your Adam, and shortly you will begin to feel like you are doing the absolute best for him, and will not regret a thing.

We tried the tot collar for the tort after months of trying to get a pt to fit it, but we were not diligent about him wearing it because he was already 11 mnths, very active, and tried to pull it off occasionally. But I think it would have worked for us had he been in it a little sooner- when he did wear it, it did work in keeping him straight and working those muscles.

Good luck to you in your journey, as you can tell, you are surely not alone. I can't believe I can actually sit here and say we've already been through this, when not long ago, I was posting questions and fears of my own. Like everything, this too shall pass. Keep up the great work on Adam's tort, good luck on the helmet process and just know that in a few months you will be able to look back at this and say, we did it!

Take Care,

' Mom

[Guest guest]

Hi Ann,

Welcome to the group! My son was also dx with tort- at 2 months- and a week shy of his 5 month birthday he was in his DOC band for the same reasons you mentioned. Don't be discouraged after only one month of pt that you have not seen results- tort is definetly not a quick fix. It took us a good 8 months to feel resolved, although some resolve quicker, and in very rare cases when pt is not working, surgery is needed (this is a last resort, usually by age 2). If you have not already, check out www.torticollis.org and the support group torticolliskids for more tips and info on torticollis. Be sure to do pt at home as well, you will be the biggest helping hand to your son there is. I have heard of some using an osteopath with good results, but I would not rely on this as sole treatment personally. The good news is, now that I am further down the road then I was where you are now, is that I can tell you with aggressive therapy and the DOC band, the tort is resolved (tilts occasionally) and the facial asymmetry is gone. The smaller eye, the puffier cheek, misaligned ears, all resolved to a point that we are comfortable saying its gone or not noticeable to outsiders. Good luck on your journey, its a rough start but you will see results with hard work. Please feel free to email me and ask any questions you may feel I can and hope to be able to answer. Keep the faith, you will start seeing results in a few short weeks to a month I hope. The DOC band will be a huge relief in that you can now concentrate on the tort while the band works on the plagio! Soon you'll be on your way to saying your Nicolas is "all better!"

Take Care,

' Mom (tort resolved, DOC grad)

[Guest guest]

Hi Anne,

Your situation is so familiar to me: my ped didn't spot the tort until 2 mnths, but at least she caught it fairly early, I have talked with moms that weren't told until 8 or 9 months old. Although she was great about dx the tort, she did not feel needed the helmet, and we went against her advice and pushed for it ourselves. She thought we were overreacting, nobody's perfect, etc. Until it was all said and done and now she commends us on doing it (he wore it for almost 3 months- from approx. 5-8months old). I think for our situation, 8 months was a long time for the tort to resolve, especially since he had a lump, which was actually a hematoma with a strangle hold on his already tight muscle. For others, I have heard within 4-5 months, they are considered resolved. However, they do say to watch this until the 2 year mark- as this muscle actually effects balance, etc.- although was ahead of schedule with every milestone, some kids do experience delays. Make sure Nicolas is using both sides of his body, and correct the posture when he starts sitting up- they tend to pull up the shoulder and hip. We stopped stretching when he was 9 months old, so really take advantage of his young age when its easier to do it. Now at this age, he pretty much is all over the place with looking up and over, so he gets in his own stretching. Use the tv to help with range of motion, really make him look the way he doesn't want to, its great therapy. I cried the day was finally able to lay on my stomach and turn his head to the left.

I can also relate to your fears about daycare and not being able to get the hands on approach- unfortunately, we had in daycare a month after learning of his tort, and I was deathly afraid of his condition worsening if not improving at all. I printed out tons of info, made a huge deal about this, informed them of how to hold him, how not to hold him, etc. They were great. However, they were clueless about repositioning- it seemed the tort overwhelmed them, and lets face it, they are not getting all the attention all the time, it just doesn't happen. So, this is one of the reasons we went for the band- I could not be at work knowing that he might be on that flat spot!! It worked out for the best. You will find such peace of mind letting the helmet do its job and working hard at stretching Nicolas daily. It does get easier. I hope to attach a link for you, if it works, that will show you a few techniques. Of course ideally you are the best person to watch your son, but if you have to leave him with a babysitter, or even family, let them know about propping his head midline and how to hold him, every little bit counts! Please email me if you need any tips or ideas, I would be glad to help!

' Mom

Stretches/ Holds

More on stretching

[Guest guest]

Hi ,

I am glad that your has no problem anymore.

I thought that the torticollis could be resolve within 2 months with

PT twice a week. I have to lower my expectations then if in your

case it took 8 months.

Hopfully I am glad I stopped working when I became pregnant to take

care of Nicolas. First of all I know nobody I trust to take care of

him in NYC as I have been in the USA for only 6 months. Before I

lived 5 years in Japan. Second I do not imagine a nanny taking care

of him properly like turning his head all the time, puting him on

his tummy as often as possible(position he hates of course!)

I was disapointed by my pedatrician who did not notice anything

during the 3 month visit and never mentionned to turn his head in

alternance or to put him on his tummy during the day. All the

recommendation I got was put him on his back.

I read an article in the magazine Babytalk, February 2002

mentionning plagiocephaly. Nicolas was 4 month old. I called my

pediatrician immediatly and tell her I was sure Nicolas had

plagiocephaly (I did not know about torticollis at that time). She

referred me to a orthopeadic who confirmed plagiocephaly and

torticollis and we started PT.

I do not understand why pediatricians do not mention more often that

condition and do not advise for more supervised tummy time during

the day!!!

Thanks again

Anne (Nicolas' Mom)

NY,NY

[Guest guest]

Hello and welcome! Wow - you have really caught the problem at its earliest

stage. You should see great correction with a helmet and probably really

quickly too. You will be amazed at how quickly your baby adjusts to wearing a

helmet 23 hours a day. I simply did not believe my ortho when he told me that

my baby would probably adjust by the end of the first day. He was right! What

kind of helmet are you getting? Will it be a DOCband, STARband or locally

made helmet? Also, if you let us know where you are from there might be a

member in our group that used the same facility that you will be using! (we

have over 1,000 members)

Does have torticollis as well or just plagio? We have some members that

are very experienced with tort as well.

I look forward to hearing more of your story in the days and weeks ahead.

Welcome - I'm glad you have joined us!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi there & welcome to our group

We're glad to have you with us. Do you know what type of helmet or

band will be getting? There are 3 most used bands/helmets,

there is a STARband made by Orthomerica which you can get from many

local orthotic hospitals/clinics, there is the DOCband made by

Cranial Technologies, they have about 13 clinics here in the states

and there are locally made helmets. Most locally made helmets are

considered " passive " meaning they simply have a gap in the area of

the helmet for the flat side of the child's head to grow into as he

or she hits growth spurts. These are most effective in younger

children, like your .

Both the STARband and DOCbands are considered " aggresive " . They

simply apply very slight pressures (the child does not feel this at

all!) to the non-flat side of a child's head which help push out the

flat area in a child's head.

Check out www.plagiocephaly.org for a list of DOCband & STARband

comparisons as well as helpful information regarding plagio..

Most baby's adapt just fine to wearing their helmet. My daughter

didn't care for one second it was on her head, she slept normal, ate

normal & played normal. She was happy as usual.

You're lucky to have had diagnosed at such a young age. He will

get fast & good correction in his helmet. He'll be hitting many

growth spurts over the next few mos so his head will be rapidly

growing.

Do you have an appt yet for him to be casted for a helmet?

Welcome again, we look forward to hearing more from you & over

the next few mos while his head gets rounder & rounder!

Debbie Abby's mom DOCGrad 6/01

MI

> My 3 1/2 month old, , has just been diagnosed and will need a

> helmet. Although my doctor is great, I have so many questions and

> just want to hear what other parents have gone through. The

> perspective is so different from the parent end that I think that

> information will be much more helpful. Any tips or just some

support

> would be great. This seems like a great group.

[Guest guest]

Debbie -

Thanks so much for replying. Because is so young we can go with

a helmet instead of a band. He was in PT for torticollis which has

greatly improved, but we haven't tried a ton of different positioning

and I'm wondering if they're getting to the helmet too soon. The

diagnosis of plagiocephaly was made by the PT and we haven't seen a

doctor or any kind of specialist yet. Someone also recommended

chiropracty for the torticollis, but I cringe at that thought. Have

you heard anything about that?

The casting is in about three weeks and we have an appointment with

our doctor next week. I did go to the plagiocephaly website and

found it helpful. I thought that this was rare and then to find out

all these people are out here is amazing. Thanks again for your

support.

, a/k/a Regan & 's mom.

> > My 3 1/2 month old, , has just been diagnosed and will need a

> > helmet. Although my doctor is great, I have so many questions

and

> > just want to hear what other parents have gone through. The

> > perspective is so different from the parent end that I think that

> > information will be much more helpful. Any tips or just some

> support

> > would be great. This seems like a great group.

[Guest guest]

Debbie -

Thanks so much for replying. Because is so young we can go with

a helmet instead of a band. He was in PT for torticollis which has

greatly improved, but we haven't tried a ton of different positioning

and I'm wondering if they're getting to the helmet too soon. The

diagnosis of plagiocephaly was made by the PT and we haven't seen a

doctor or any kind of specialist yet. Someone also recommended

chiropracty for the torticollis, but I cringe at that thought. Have

you heard anything about that?

The casting is in about three weeks and we have an appointment with

our doctor next week. I did go to the plagiocephaly website and

found it helpful. I thought that this was rare and then to find out

all these people are out here is amazing. Thanks again for your

support.

, a/k/a Regan & 's mom.

> > My 3 1/2 month old, , has just been diagnosed and will need a

> > helmet. Although my doctor is great, I have so many questions

and

> > just want to hear what other parents have gone through. The

> > perspective is so different from the parent end that I think that

> > information will be much more helpful. Any tips or just some

> support

> > would be great. This seems like a great group.

[Guest guest]

Hi and welcome to the group! It is terrific that your doctor is so

proactive and has diagnosed at such a young age. At 3 1/2

months is at a wonderful age. Have you tried aggressive

repositioning, he's young enough to get some improvemnet from

repositioning. And if he does go into the helmet, he will be hitting

so many growth spurts, so his time in the helmet probably won't be

long!! As for tips any tips or supposrt, you have definitely joined

the right group! The parents here are wonderful and are always so

quick to give some friendly advise. We're glad to have here!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> My 3 1/2 month old, , has just been diagnosed and will need a

> helmet. Although my doctor is great, I have so many questions and

> just want to hear what other parents have gone through. The

> perspective is so different from the parent end that I think that

> information will be much more helpful. Any tips or just some

support

> would be great. This seems like a great group.

[Guest guest]

,

I know that several moms from the tort group were very happy with the chiro

for tort. I too was very nervous about this and never persued it because my

pt was very against it. I might still do it, I have heard there is no

manipulation of the spine, but they use some kind of " zapper " on the muscle

that doesn't hurt (moms tried it too to see). I think maybe Sue has done

this?

' Mom

[Guest guest]

Wow Jane - you've been through a lot. Good for you for being persistent and

fighting all of the ignorance out there. My thoughts are with you.

(MI) mom to Regan (5) and (4 mos., helmet in the future)

[Guest guest]

-

We live in Cleveland Hts. We used to live in Univeristy Hts after

graduating from Carroll. Would love to get together with you

sometime.

is Dane's therapist too. He got his DOC Band 2/14 and is 6

months old.

Dane mom

[Guest guest]

Hi & welcome to our group!

We're glad to have you . You will be very happy with your choice

to go ahead with the DOCband for Jane. I'm sure you'll see good

improvement over the next few mos while she is wearing her band.

Your story is pretty common, unfortunately. I have heard that

Karmel Ross is AMAZING with tort. patients - how is Jane's tort

coming along??

How has Jane adjusted to wearing her new band? It's pretty amazing

how fast babies adjust to wearing them, they usually don't care one

bit!

Welcome again - we look forward to hearing more from you in Jane's

journey to a rounder head

Debbie Abby's mom DOCGrad

MI

> Greetings Group,

> My name is and my daughter Jane (8 months) has Plagio and

> Torticollis. We live in University Heights, Ohio (suburb of

Cleveland)

> My story is pretty typical...

>

> * I noticed she always looked in same direction and took her to Ped

> at six weeks. Was diagnosed with TORT and Plagio..but PED acted

like

> it was no big deal. Referred me to PT - Karmel Ross.

> * She had flat spot behind right ear..with forehead bossing and one

> cheek way fuller than the other and one eye fuller than other.

Still

> seemed pretty mild though.

> * PT began in OCT.

> * in DEC PT recommended we BAND..but PED did not think we should

and

> referred us to Neurosurgeon who also recommend we NOT band but gave

> us script. Said to try REPOSITION ONLY ( " but the choice is up to

> you " - ever hear that one before group??? HA HA) He was concerned

> about banding because Jane has a large Hemangioma (birthmark) on

her

> forehead and not sure if I could band

> * Cranial Tech and a Dermatologist said it was OK to band with the

> Hemangioma

> * AGONISED FOR THREE MONTHS AS TO WHETHER REPOSITIONING WAS WORKING!

> * sumbitted DOC band perscription to United Healthcare and promptly

> DENIED. I am fighting appeal!

> * ANTROPOMETRIC DATA getting worse she started at 12 mm off and now

> 16 mm cranial vault with 6 mm facial assymetry. Decided to see

> Cranial Plastic Surgeon.

> * Waited 6 weeks to get into Cranial PLastic Surgeon..and then the

> day before appointment HE CANCELLED! Could not get in again for

> another six weeks.

> * Decided I could not wait and Casted the next Saturday.

> * Jane received her DOC BAND on Monday

> * Found this GROUP (Hurrah!)

>

> I look foreward to having such a great research at my finger tips.

> Will post some specific questions I have in aonther post!

> Thanks for listening!

> and Jane (DOB 7/5/01 DOC BAND 3/18/2002)

[Guest guest]

Thanks Debbie!

Jane adjusted to her band IMMEDIATELY! I cannot beleive I put it off

and dreaded in it. I am so happy she does not mind it!

is great with TORT and very passionate. Janes TORT is

completely resolved and we were discharged in February. (Started

October) ALthough happened to mention when we put her in the

DOC that she saw the TORT " creeping back " .

Thanks for the welcome!

(and Jane)

> > Greetings Group,

> > My name is and my daughter Jane (8 months) has Plagio and

> > Torticollis. We live in University Heights, Ohio (suburb of

> Cleveland)

> > My story is pretty typical...

> >

> > * I noticed she always looked in same direction and took her to

Ped

> > at six weeks. Was diagnosed with TORT and Plagio..but PED acted

> like

> > it was no big deal. Referred me to PT - Karmel Ross.

> > * She had flat spot behind right ear..with forehead bossing and

one

> > cheek way fuller than the other and one eye fuller than other.

> Still

> > seemed pretty mild though.

> > * PT began in OCT.

> > * in DEC PT recommended we BAND..but PED did not think we should

> and

> > referred us to Neurosurgeon who also recommend we NOT band but

gave

> > us script. Said to try REPOSITION ONLY ( " but the choice is up to

> > you " - ever hear that one before group??? HA HA) He was concerned

> > about banding because Jane has a large Hemangioma (birthmark) on

> her

> > forehead and not sure if I could band

> > * Cranial Tech and a Dermatologist said it was OK to band with

the

> > Hemangioma

> > * AGONISED FOR THREE MONTHS AS TO WHETHER REPOSITIONING WAS

WORKING!

> > * sumbitted DOC band perscription to United Healthcare and

promptly

> > DENIED. I am fighting appeal!

> > * ANTROPOMETRIC DATA getting worse she started at 12 mm off and

now

> > 16 mm cranial vault with 6 mm facial assymetry. Decided to see

> > Cranial Plastic Surgeon.

> > * Waited 6 weeks to get into Cranial PLastic Surgeon..and then

the

> > day before appointment HE CANCELLED! Could not get in again for

> > another six weeks.

> > * Decided I could not wait and Casted the next Saturday.

> > * Jane received her DOC BAND on Monday

> > * Found this GROUP (Hurrah!)

> >

> > I look foreward to having such a great research at my finger

tips.

> > Will post some specific questions I have in aonther post!

> > Thanks for listening!

> > and Jane (DOB 7/5/01 DOC BAND 3/18/2002)

[Guest guest]

Hi ,

Welcome to the group!! Another member going the distance!! Kudos to you for

being a great mommy that went through thick and thin for your kiddo! You are

probably in the BEST hands with KKR for the tort- so no advice I could ever

give you would compare to the Goddess who wrote the book on it;)

The DOC band really worked wonders on ' facial asymmetry, including

the bossing, eye smaller and fuller cheek, especially on the ear

misalignment. Congrats to you for finally getting that casting done!! Keep

us posted on how its going!

' Mom (tort resolved, DOC grad)

[Guest guest]

Hello fellow and a July baby!!

My son, Maxwell, was born July 2nd, 2001. My ped just flat out said

NO BAND NEEDED and reposition. LONG story and nearly a fist fight

later, we got Maxwell banded at 10.5 months and it was done at 14

months. Since being OUT of the band, his head has continued to " round

out " . It's never to late to start, IMHO.

Welcome aboard!! We will give you more advice than you can read in

one sitting, from how to get your claim UNdenided to decorating to

dealing with the " smart " people in the world who stare at our

beautiful children.

& Maxwell Hart

San Francsico, CA

> Greetings Group,

> My name is and my daughter Jane (8 months) has Plagio and

> Torticollis. We live in University Heights, Ohio (suburb of

Cleveland)

> My story is pretty typical...

>

> * I noticed she always looked in same direction and took her to Ped

> at six weeks. Was diagnosed with TORT and Plagio..but PED acted

like

> it was no big deal. Referred me to PT - Karmel Ross.

> * She had flat spot behind right ear..with forehead bossing and one

> cheek way fuller than the other and one eye fuller than other.

Still

> seemed pretty mild though.

> * PT began in OCT.

> * in DEC PT recommended we BAND..but PED did not think we should

and

> referred us to Neurosurgeon who also recommend we NOT band but gave

> us script. Said to try REPOSITION ONLY ( " but the choice is up to

> you " - ever hear that one before group??? HA HA) He was concerned

> about banding because Jane has a large Hemangioma (birthmark) on

her

> forehead and not sure if I could band

> * Cranial Tech and a Dermatologist said it was OK to band with the

> Hemangioma

> * AGONISED FOR THREE MONTHS AS TO WHETHER REPOSITIONING WAS WORKING!

> * sumbitted DOC band perscription to United Healthcare and promptly

> DENIED. I am fighting appeal!

> * ANTROPOMETRIC DATA getting worse she started at 12 mm off and now

> 16 mm cranial vault with 6 mm facial assymetry. Decided to see

> Cranial Plastic Surgeon.

> * Waited 6 weeks to get into Cranial PLastic Surgeon..and then the

> day before appointment HE CANCELLED! Could not get in again for

> another six weeks.

> * Decided I could not wait and Casted the next Saturday.

> * Jane received her DOC BAND on Monday

> * Found this GROUP (Hurrah!)

>

> I look foreward to having such a great research at my finger tips.

> Will post some specific questions I have in aonther post!

> Thanks for listening!

> and Jane (DOB 7/5/01 DOC BAND 3/18/2002)

[Guest guest]

and Maxwell! Thanks for the support!

and Jane

> > Greetings Group,

> > My name is and my daughter Jane (8 months) has Plagio and

> > Torticollis. We live in University Heights, Ohio (suburb of

> Cleveland)

> > My story is pretty typical...

> >

> > * I noticed she always looked in same direction and took her to

Ped

> > at six weeks. Was diagnosed with TORT and Plagio..but PED acted

> like

> > it was no big deal. Referred me to PT - Karmel Ross.

> > * She had flat spot behind right ear..with forehead bossing and

one

> > cheek way fuller than the other and one eye fuller than other.

> Still

> > seemed pretty mild though.

> > * PT began in OCT.

> > * in DEC PT recommended we BAND..but PED did not think we should

> and

> > referred us to Neurosurgeon who also recommend we NOT band but

gave

> > us script. Said to try REPOSITION ONLY ( " but the choice is up to

> > you " - ever hear that one before group??? HA HA) He was concerned

> > about banding because Jane has a large Hemangioma (birthmark) on

> her

> > forehead and not sure if I could band

> > * Cranial Tech and a Dermatologist said it was OK to band with

the

> > Hemangioma

> > * AGONISED FOR THREE MONTHS AS TO WHETHER REPOSITIONING WAS

WORKING!

> > * sumbitted DOC band perscription to United Healthcare and

promptly

> > DENIED. I am fighting appeal!

> > * ANTROPOMETRIC DATA getting worse she started at 12 mm off and

now

> > 16 mm cranial vault with 6 mm facial assymetry. Decided to see

> > Cranial Plastic Surgeon.

> > * Waited 6 weeks to get into Cranial PLastic Surgeon..and then

the

> > day before appointment HE CANCELLED! Could not get in again for

> > another six weeks.

> > * Decided I could not wait and Casted the next Saturday.

> > * Jane received her DOC BAND on Monday

> > * Found this GROUP (Hurrah!)

> >

> > I look foreward to having such a great research at my finger

tips.

> > Will post some specific questions I have in aonther post!

> > Thanks for listening!

> > and Jane (DOB 7/5/01 DOC BAND 3/18/2002)

[Guest guest]

Hi and Jane, welcome to our group! It sounds like you were

given quite the run-around getting a band for your daughter. Good

for you that you kept pursuing it and going with your mommy

instincts! You will not regret getting a band for Jane! Good luck

to you and be sure to ask any question or let off a little steam when

ever you need to...we've all been there!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Greetings Group,

> My name is and my daughter Jane (8 months) has Plagio and

> Torticollis. We live in University Heights, Ohio (suburb of

Cleveland)

> My story is pretty typical...

>

> * I noticed she always looked in same direction and took her to Ped

> at six weeks. Was diagnosed with TORT and Plagio..but PED acted

like

> it was no big deal. Referred me to PT - Karmel Ross.

> * She had flat spot behind right ear..with forehead bossing and one

> cheek way fuller than the other and one eye fuller than other.

Still

> seemed pretty mild though.

> * PT began in OCT.

> * in DEC PT recommended we BAND..but PED did not think we should

and

> referred us to Neurosurgeon who also recommend we NOT band but gave

> us script. Said to try REPOSITION ONLY ( " but the choice is up to

> you " - ever hear that one before group??? HA HA) He was concerned

> about banding because Jane has a large Hemangioma (birthmark) on

her

> forehead and not sure if I could band

> * Cranial Tech and a Dermatologist said it was OK to band with the

> Hemangioma

> * AGONISED FOR THREE MONTHS AS TO WHETHER REPOSITIONING WAS WORKING!

> * sumbitted DOC band perscription to United Healthcare and promptly

> DENIED. I am fighting appeal!

> * ANTROPOMETRIC DATA getting worse she started at 12 mm off and now

> 16 mm cranial vault with 6 mm facial assymetry. Decided to see

> Cranial Plastic Surgeon.

> * Waited 6 weeks to get into Cranial PLastic Surgeon..and then the

> day before appointment HE CANCELLED! Could not get in again for

> another six weeks.

> * Decided I could not wait and Casted the next Saturday.

> * Jane received her DOC BAND on Monday

> * Found this GROUP (Hurrah!)

>

> I look foreward to having such a great research at my finger tips.

> Will post some specific questions I have in aonther post!

> Thanks for listening!

> and Jane (DOB 7/5/01 DOC BAND 3/18/2002)

[Guest guest]

,

Hello and welcome! I noticed a previous post where you said UHC had denied

your claim. Does you policy have coverage for Durable Medical Equipment? Our

helmet was covered under this provision.

I'm glad to hear that your baby is well on the way to a rounder head and a

resolution to the tort. That's great - sounds like you are an extremely

conscientious mom!

Glad to have you with the group and look forward to hearing some updates from

you!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi Kellie & Sophia,

Welcome to the group!! My son was dx with tort at 2 months, and we went for

the DOC band at age 5 months, so we have lots in common there!! You have

found a great bunch of parents here, ready to help you with any questions you

may have. You can also touch base with parents dealing with tort at

www.torticolliskids , they are also an excellent source on

tips and advice to learn more about torticollis and how to treat it. My son

is now 15 months old, so we have been down the road you are now embarking on-

keep the faith and keep up the good work with pt, you'll have great results

I'm sure!!! My son also recevied great correction with the DOC

band, but we are in Florida. The CT office was wonderful. Good luck to you

and please feel free to email me anytime!

' Mom

[Guest guest]

Hi Kellie,

My son used Cranial Therapies in Burbank and the orthotist, , is really great. Tommy received excellent correction and his plagio was classified as severe. Where in T.O. are you? I live in Las Vegas but before that I was in Ventura and worked at the T.O. mall...

Jill Ramos, Las Vegas, NV