new member

Report post · October 28, 2002

<PRE>seems we have had alot of new members lately. welcome and i'm sorry you had

to find us in this manner. kathy, 42 widow. i have a 19 year old son. having

symptoms for the last 8 yrs. i have inflamatory

spondyloarthropy/fibromyalgia, carpal tunnel bilaterally and tarsal tunnel

bilaterally. glaucoma, gerd. have been on ssd for a year now, still battling

with my old company for my ltd. i've been in florida visiting my parents and

trying to catch up on some mails!!! kathy in il

Report post · November 7, 2002

Hi ,

Welcome to the group. I also find it difficult to talk with family about my

aches and pains sometimes. I feel like I am always complaining. That's why

I just love this group of sincere people. They can say, " I know how you

feel. " and I know they mean it.

Love and Hugs

Stacey in PA

Report post · November 10, 2002

Hi Jane,

Welcome to our group. You are certainly in the right place to complain and

to ask questions. We all understand how you feel. I take methotrexate also

and am always tired and fatigued. Some days are better than others. I am

35, divorced and the mother of a son who is 6. I was diagnosed with RA

almost 3 years ago and my condition has been on a steady decline ever since.

Its funny how a person can live with a condition for a long time and when it

is finally diagnosed, they go downhill fast. I lost my job a year and a half

ago because I just couldn't keep up. That was a little over a year after I

was diagnosed. I also try not to talk too much about my condition to my

family. They try to understand, but I feel like I am always complaining to

them and one day they will just get sick of hearing it. I tell them if they

ask. I do as much as I can and always hope for better days. My son keeps me

going on most days. He is a true blessing for me. My parents help when I

ask. In the beginning, they tried to do everything for me, but I asked them

to let me do what I can and I will ask for help with the other things. They

still baby me a little, but its not as bad. It took me a long time to adjust

to living with RA and its limitations and I still have some days when I just

get so mad and depressed because I have this horrible disease. When I was in

the middle of my divorce, I always said that my ex was going to catch a

disease that had no cure and die a long, painful death. Look who got

it!!!!!! LOL!

I guess I need to be careful what I wish for. I hope that you can find some

comfort soon.

Love and Hugs,

Stacey in PA

Report post · November 13, 2002

Hi Welcome to the group and thanks for the great intro. I am sorry to hear your ped give you the round out on its own bit-that is too common and so frustrating. Here is a link to compare helmets that may be helpful to you and a link to files and head shapes. files head shapes COMPAREHELMET

Given the age of your baby I would have to rec going with something that is not a passive style helmet and being a doc grad I would say the DOC all the way- although we have had many moms with great star band successes- you don't have a lot of time to waist because of the insurance glitch you mentioned I have taken the liberty of forwarding your message onto Carol kson at Cranial Tech to see if she can shed any light on the situation? She is great about responding so I am sure we will hear from her regarding the same.

This is such a difficult time but if you follow your mommy instincts you will know what to do. We have had some success stories with older babies being casted but time is if the essence. I am so glad you have found us you will find a lot of support here. Welcome/

beck

Mom to

doc grad

repositioner

Memphis TN

Report post · November 13, 2002

Hi Corina,

Welcome to the group! The DOCband and the STARband work the same way.

The only concern with the STARband is if the orthotist has

experience. From what you say your friend has experience so you don't

have anything to worry about. When is your appt with the neuro?

Good luck! Please keep us posted on your son.

> Hi, everyone, my name is Corina and I've just entered the world of

> positional plagiocephaly. In the last 3 weeks I think I've earned

a

> master's degree in the head deformities, I definitely know more

than

> my pediatrician!!!

>

> Anyway, it's almost too late for my son, TJ, who is 21 months old.

> There was a local news special on " flattened head syndrome, " (which

I

> didn't actually see), but a friend from church told me about it. I

> immediately started to check it out and discovered that his flat

head

> had an actual name. He was actually born with these huge ridges

> (which I called horns cuz they stuck out so much). Anyway, his

> ridges receded within 2 mos or so, but his flattened back right

> didn't. The Ped kept telling me " he'll grow out of it, we'll keep

an

> eye on it, " and even tho my instincts told me that wasn't right, I

> didn't know where to even begin to find anything out. (sigh)

>

> Well, we've got an appt with a local neurosurgeon and a good friend

> of ours from church is an orthotist and he said he'd cast him and

fit

> him and do all the adjustments of a STAR band, but he recommended

> because of TJ's age to go ahead and see the neurosurgeon first.

>

> I tried the DOC route cuz there was so much info out there about

> them, but they bill under a procedure code of S1040, which my

> insurance says is invalid. The funny thing is, if DOC billed under

a

> different code (L0100) our insurance would pay. The only precert

> option we have is to send a letter explaining what will actually be

> billed, include the studies, etc. and a letter of medical

necessity,

> but we trust our friend the orthotist so we think if the neuro says

> his sutures aren't " nailed shut " then we'll do it.

>

> I would appreciate any comments ya'll have, especially about STAR

Vs.

> DOC or anything else. I've kind of been " lurking " for 2 days

reading

> and you seem like a very informative, supportive group of folks.

>

> OK, I'm done now. :-)

Report post · November 14, 2002

Hi Corina & welcome to our group

I'm so very sorry to read of the lack of recognition/attention your

pediatrican gave your son's plagio, what a shame he didn't even know

the name of TJ's flattened head! Unfortunately though, that is common

amongst the medical field, so many pediatricians aren't plagio aware

and simply tell concerned parents " he'll out grow it " " it'll round

over time " " hair will cover it " " nobody's head is perfect " ....it

saddens me to hear these stories time & time again from so many new

members, like you.

From what I've been told and read, Orthomerica, the mfg of the

STARband will only band babies up til age 18 mos., so I'm not sure if

they would band TJ. Maybe they would make an exception being that

you are friends with a STARband ortho? That's something you'd have

to double check.

But your first step, prior to banding, would be to see a ped. neuro

to make sure TJ's sutures are still open in his head. If they are

now closed, which is possible given the fact he's almost 2 yrs old,

banding will not be an option, as it would not produce any

improvement.

Cranial Technologies, will band children up til age 24 mos, give the

sutures are still open. I'd imagine they'd want to evaluate TJ prior

to banding him, if they don't feel he'd benefit from their band,

they'd probably not band him.

I really hope there's still time for TJ to receive a band & get

correction from it.

I'm so sorry it's taken you so long to get attention, and that you've

had to find out all this information on your own .

Please keep us posted on TJ's status, let us know if you band or

not. Best of luck to you & TJ. Welcome again

Debbie Abby's mom DOCgrad

MI

> Hi, everyone, my name is Corina and I've just entered the world of

> positional plagiocephaly. In the last 3 weeks I think I've earned

a

> master's degree in the head deformities, I definitely know more

than

> my pediatrician!!!

>

> Anyway, it's almost too late for my son, TJ, who is 21 months old.

> There was a local news special on " flattened head syndrome, " (which

I

> didn't actually see), but a friend from church told me about it. I

> immediately started to check it out and discovered that his flat

head

> had an actual name. He was actually born with these huge ridges

> (which I called horns cuz they stuck out so much). Anyway, his

> ridges receded within 2 mos or so, but his flattened back right

> didn't. The Ped kept telling me " he'll grow out of it, we'll keep

an

> eye on it, " and even tho my instincts told me that wasn't right, I

> didn't know where to even begin to find anything out. (sigh)

>

> Well, we've got an appt with a local neurosurgeon and a good friend

> of ours from church is an orthotist and he said he'd cast him and

fit

> him and do all the adjustments of a STAR band, but he recommended

> because of TJ's age to go ahead and see the neurosurgeon first.

>

> I tried the DOC route cuz there was so much info out there about

> them, but they bill under a procedure code of S1040, which my

> insurance says is invalid. The funny thing is, if DOC billed under

a

> different code (L0100) our insurance would pay. The only precert

> option we have is to send a letter explaining what will actually be

> billed, include the studies, etc. and a letter of medical

necessity,

> but we trust our friend the orthotist so we think if the neuro says

> his sutures aren't " nailed shut " then we'll do it.

>

> I would appreciate any comments ya'll have, especially about STAR

Vs.

> DOC or anything else. I've kind of been " lurking " for 2 days

reading

> and you seem like a very informative, supportive group of folks.

>

> OK, I'm done now. :-)

Report post · November 14, 2002

Welcome to the group Corina!

Did you check out this link?

http://www.plagiocephaly.org/support/compare.htm

You can compare the 2 bands. According to this, the STARband is

used for 3-18 mo.

That is nice that your friend is an orthotist. I would still

encourage you to ask for before and after pictures of children he

has banded before. Each orthotist is independent and some can be

quite inexperienced, while others are pros.

Given your son's age, I assume you will be moving on this decision

quickly! Good luck and again welcome to the group!

Dane's mom DOC Grad

Report post · November 14, 2002

Hi Corina,

Welcome to the group! You have already gotten tons of great advice regarding the DOC band vs. STARband. The only thing that would concern me is whether or not the orthotist that you mentioned has done a lot of helmets. You really want to go with someone that has done them to the point of expertise- things can go wrong in the wrong hands, and although very well meaning, make sure this person is way over qualified for the job before using him. Ask for references, before and after pics, if he is skilled at treating plagio, he will more than likely have documented his success stories. Good luck and please keep us posted!

' Mom

Report post · November 14, 2002

Hi Corina,

I'm sorry to hear about your ped. Ours was that way too.

Fortunately my husband got the point across to him that we

wanted a referral when she was 7 months old. We had been

asking about it since she was 4 months. If it had just been me I

would have been inclined to trust the ped unconditionally. :-( I

see you have received several responses talking about the

STAR and DOCband. Since the STARband makers say they only

treat babies up to 18 months and DOC says 24 months you

would perhaps have a case with your insurance co for using the

DOC instead of the STAR. However, if your visit to the neuro

shows that the sutures are open I would imagine you could get

some correction from a STAR or DOCband. They are very similar

and I have always wondered why the STARband stops at 18

months and the DOCband goes until 24 months. I hope it is not

too late for TJ to get a band. Please keep us posted. Hopefully

things can move really quickly from this point.

Marci (Mom to )

Oklahoma

--- In Plagiocephaly@y..., " lobrassmom " <LoBrassMom@c...>

wrote:

> Hi, everyone, my name is Corina and I've just entered the world

of

> positional plagiocephaly. In the last 3 weeks I think I've earned

a

> master's degree in the head deformities, I definitely know more

than

> my pediatrician!!!

>

> Anyway, it's almost too late for my son, TJ, who is 21 months

old.

> There was a local news special on " flattened head syndrome, "

(which I

> didn't actually see), but a friend from church told me about it. I

> immediately started to check it out and discovered that his flat

head

> had an actual name. He was actually born with these huge

ridges

> (which I called horns cuz they stuck out so much). Anyway, his

> ridges receded within 2 mos or so, but his flattened back right

> didn't. The Ped kept telling me " he'll grow out of it, we'll keep

an

> eye on it, " and even tho my instincts told me that wasn't right, I

> didn't know where to even begin to find anything out. (sigh)

>

> Well, we've got an appt with a local neurosurgeon and a good

friend

> of ours from church is an orthotist and he said he'd cast him

and fit

> him and do all the adjustments of a STAR band, but he

recommended

> because of TJ's age to go ahead and see the neurosurgeon

first.

>

> I tried the DOC route cuz there was so much info out there

about

> them, but they bill under a procedure code of S1040, which my

> insurance says is invalid. The funny thing is, if DOC billed

under a

> different code (L0100) our insurance would pay. The only

precert

> option we have is to send a letter explaining what will actually

be

> billed, include the studies, etc. and a letter of medical

necessity,

> but we trust our friend the orthotist so we think if the neuro says

> his sutures aren't " nailed shut " then we'll do it.

>

> I would appreciate any comments ya'll have, especially about

STAR Vs.

> DOC or anything else. I've kind of been " lurking " for 2 days

reading

> and you seem like a very informative, supportive group of folks.

>

> OK, I'm done now. :-)

Report post · November 14, 2002

>Since the STARband makers say they only

> treat babies up to 18 months and DOC says 24 months you

> would perhaps have a case with your insurance co for using the

> DOC instead of the STAR.

Corina-

Marci makes an excellent case for appealing with your insurance to

get a DOC Band. We send our insurance stuff in, had our denial in a

week and casted Dane the next day (wanted to get the denial first).

Honestly, given your sons age, I would recommend a DOC Band since

Orthomerica states that STARbands are for babies 3-18 months. If it

was me, I would RUN right to CT for the evaluation to get the ball

rolling. If his sutures aren't closed, they will be very shortly and

it can take over a month to get into the neurosurgeon.

I don't want this to sound pushy in anyway, I've just been thinking

about it this afternoon. I really hope those sutures are open in

the event that you chose to band him!

Report post · January 20, 2003

Hi Suzanne & welcome to our group!

Sure, it's definitely better to begin treatment younger because the

old the baby gets, the fewer growth spurts they will have. However, if

you do wait until your son is 8 mos old, he still would have plenty of

time for correction.

It's a great idea to go to the Straight Ahead Cranial Tech for an

evaluation. Trust me when I tell you Cranial Tech does not simply

" sell " you their product. They would not band your son if they felt

his case was too mild - we've heard of a couple cases where they did

no band for that reason. They are a very reputable & honest company.

Welcome again. Please keep us posted.

Debbie Abby's mom DOCGrad

MI

> Hi. My name is Suzanne and I have a 6 mo son (Baby A of twins) who has

> what I'd call mild plagiocephaly. From the front he looks normal

> (there is a slight forehead protrusion on one side) but from the back

> there is an obvious flattening on the right side. Our Ped Neuro.

> recommended waiting another 2 months ( would be 8 months) to see

> how it's progressed since he's more mobile. I made her give me an Rx

> for a band and we're going to see Straight Ahead in Mayfield, OH,

> mostly to get a second opinion. I talked to the PT on the phone and

> she was very eager to get started and she hasn't even seen my son yet.

> Is 8 months too late to start to get good correction? I'm inclined to

> get started sooner to get the most correction possible, but this PT

> makes me thinkn she's in it for the $.

> Any thoughts?

Report post · January 20, 2003

Suzanne-

Are you in Cleveland? We went to Straight Ahead. I assume you

spoke with Karmel Ross.

Who is your dr? I would suggest following 's recommendations.

She will measure your baby and take lots of pictures. You can trust

her to be honest. She did tell someone I know that a band wasn't

warranted.

is THE torticollis (tight neck muscle) expert. We went for a

DOC Band and Dane ended up back in physical therapy. His tort

wasn't resolved even though he had already been discharged by

another PT (urgh!). I am so thankful this was pointed out to us! I

didn't even notice his residual tilting.

6 months is a great age for correction. And this is the best time

of year to band as you don't have the heat issue to deal with IMO!

Let us know what and at Straight Ahead say. They did

a great job with Dane.

Dane's mom DOC Grad

> Hi. My name is Suzanne and I have a 6 mo son (Baby A of twins) who

has

> what I'd call mild plagiocephaly. From the front he looks normal

> (there is a slight forehead protrusion on one side) but from the

back

> there is an obvious flattening on the right side. Our Ped Neuro.

> recommended waiting another 2 months ( would be 8 months) to

see

> how it's progressed since he's more mobile. I made her give me an

Rx

> for a band and we're going to see Straight Ahead in Mayfield, OH,

> mostly to get a second opinion. I talked to the PT on the phone

and

> she was very eager to get started and she hasn't even seen my son

yet.

> Is 8 months too late to start to get good correction? I'm

inclined to

> get started sooner to get the most correction possible, but this

PT

> makes me thinkn she's in it for the $.

> Any thoughts?

Report post · January 20, 2003

suzanne,

it took us about 6 wks to actually get ryan in his helmet from when we left

our appt w/ the neuro-pedi. you usually wait 2 wks after the casting for the

helmet - then there are the adjustments. . . if it was me, i'd go ahead and

not wait it out. the early to get correction thru the band, the better. my

dh and i still wish we pushed the issue with his pedi at ryan's 4 month

check-up.

Donna - Richmond Va

, starbanded 11/02

<Hi. My name is Suzanne and I have a 6 mo son (Baby A of twins) who has

what I'd call mild plagiocephaly. From the front he looks normal

(there is a slight forehead protrusion on one side) but from the back

there is an obvious flattening on the right side. Our Ped Neuro.

recommended waiting another 2 months ( would be 8 months) to see

how it's progressed since he's more mobile. I made her give me an Rx

for a band and we're going to see Straight Ahead in Mayfield, OH,

mostly to get a second opinion. I talked to the PT on the phone and

she was very eager to get started and she hasn't even seen my son yet.

Is 8 months too late to start to get good correction? I'm inclined to

get started sooner to get the most correction possible, but this PT >

Report post · January 20, 2003

Hi Suzanne,

Welcome to the group. The earlier a baby starts band therapy the

quicker and better the results will be. If I knew then what I know

now, I would of banded much younger! I tried and tried but hit a

brick wall at every turn. I think if you can band now, do it. Why

wait 2 months? Good luck making your decision and please let us know

what you decide.

> Hi. My name is Suzanne and I have a 6 mo son (Baby A of twins) who

has

> what I'd call mild plagiocephaly. From the front he looks normal

> (there is a slight forehead protrusion on one side) but from the

back

> there is an obvious flattening on the right side. Our Ped Neuro.

> recommended waiting another 2 months ( would be 8 months) to

see

> how it's progressed since he's more mobile. I made her give me an

Rx

> for a band and we're going to see Straight Ahead in Mayfield, OH,

> mostly to get a second opinion. I talked to the PT on the phone

and

> she was very eager to get started and she hasn't even seen my son

yet.

> Is 8 months too late to start to get good correction? I'm inclined

to

> get started sooner to get the most correction possible, but this PT

> makes me thinkn she's in it for the $.

> Any thoughts?

Report post · January 30, 2003

Welcome, Vi!

We have many members with experience with Enbrel and psoriasis, but

those with PA as opposed to RA are in the minority.

Hope you can try Enbrel and that it works for you.

HealthTalk has a lot of interesting information on psoriatic arthritis

and biologic therapy:

http://www.healthtalk.com/psoriasis/index.html

[ ] New Member

>

> Greetings,

>

> I am a new member. I have psoriatic arthritis with psoriasis of the

scalp and nails. All of my distal finger joints are involved, my neck,

left ankle, left knee, left hip, and left shoulder. I take celebrex,

methotrexate (shot), and folic acid. The methotrexate and celebrex help

me a lot. I have never been free of inflammation or the psoriasis

however. So my rheumatologist want to put me on embrel. Right now I am

reading about it and she want to me check to see if my insurance pays

for it. I did find out that it is upward up $1,000.00 a month. While I

would not be paying that with insurance, I worry about the cost because

my insurance is though my husband who works in a small business. Being

also a nurse, I am familiar with the problems of patients being fired

because they are a high risk insuree. My understanding is that embrel

is effective in substantially decreasing the inflammation and the join

pain and damage as well as clearing up the psoriasis. I wondered if

anybody has my condition and if anybody has taken embrel and what are

your experiences with it. Thanks.

>

> Vi Wilkes

Report post · January 30, 2003

,

Wow, thanks for the link. I will spend some time browsing there.

Vi Wilkes, MS, MA, ACRN, EdD Candidate -

Faculty, University of Phoenix Online

viwilkes@...

309-241-8940 or 815-468-0531

Re: [ ] New Member

Welcome, Vi!

We have many members with experience with Enbrel and psoriasis, but

those with PA as opposed to RA are in the minority.

Report post · January 30, 2003

Hi Vi, Welcome to our group. Sorry for your reasons for finding us. I¹ve

been on Enbrel since shortly after it was approved and it has done wonders

for my inflammation. My husband also has insurance from a small business

and they cover my Enbrel. I hope you are able to try it. I¹ve heard that

it works well for PA.

a

>

> Greetings,

>

> I am a new member. I have psoriatic arthritis with psoriasis of the scalp

> and nails. All of my distal finger joints are involved, my neck, left

> ankle, left knee, left hip, and left shoulder. I take celebrex,

> methotrexate (shot), and folic acid. The methotrexate and celebrex help me

> a lot. I have never been free of inflammation or the psoriasis however. So

> my rheumatologist want to put me on embrel. Right now I am reading about it

> and she want to me check to see if my insurance pays for it. I did find out

> that it is upward up $1,000.00 a month. While I would not be paying that

> with insurance, I worry about the cost because my insurance is though my

> husband who works in a small business. Being also a nurse, I am familiar

> with the problems of patients being fired because they are a high risk

> insuree. My understanding is that embrel is effective in substantially

> decreasing the inflammation and the join pain and da! mage as w Vi Wilkes

>

Report post · February 2, 2003

Hello

Welcome to our group, I have been taking Enbrel for about two weeks,

I have been doing well so far on it, I felt a little sick with it at first but

it is getting better.I would ask your Pharmacy about the cost.

You will just love everyone here, they have helped me a lot and I

love to just listen to everyone, I would be lost without them

WELCOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jane-WI

Vi Wilkes <v.wilks@...> wrote:

Greetings,

I am a new member. I have psoriatic arthritis with psoriasis of the scalp and

nails. All of my distal finger joints are involved, my neck, left ankle, left

knee, left hip, and left shoulder. I take celebrex, methotrexate (shot), and

folic acid. The methotrexate and celebrex help me a lot. I have never been

free of inflammation or the psoriasis however. So my rheumatologist want to put

me on embrel. Right now I am reading about it and she want to me check to see

if my insurance pays for it. I did find out that it is upward up $1,000.00 a

month. While I would not be paying that with insurance, I worry about the cost

because my insurance is though my husband who works in a small business. Being

also a nurse, I am familiar with the problems of patients being fired because

they are a high risk insuree. My understanding is that embrel is effective in

substantially decreasing the inflammation and the join pain and damage as well

as clearing up the psoriasis. I wondered if anybody has my condition and if

anybody has taken embrel and what are your experiences with it. Thanks.

Vi Wilkes

Report post · February 7, 2003

Welcome to our group, Shar!

I'm very sorry you have so many diseases and conditions to deal with. I

hope the meds you are on are helping your RA.

Our chat feature isn't used very often, but feel free to let others know

when you would like to give it a try.

Hope to get to know you better.

[ ] New Member

> Hi,

>

> I am new to R/A. I was finally dx'd in May of last year and put on

> methotrexate injections. I am now taking Enbrel and metho injections

> and Imuran. This illness is new to me and I do not know what to

> expect. I also suffer FMS, CFS, MPS, RLS, IBS, TJM, GERD,

> HYPERTENSION, OSTEOPOROSIS, TEMPORAL ARTERITIS, SCOLIOSIS, BONE SPURS

> IN SPINE, BRAIN LESIONS, SLEEP APNEA, DEPRESSION AND I HAD A MILE

> STROKE IN 1999..

>

> Finding this support group is a blessing. I would like to know the

> schedule of the chatroom so I can speak with others who suffer from

> R/A.

>

> fibromite (screen name)

Report post · February 22, 2003

HI Teri & welcome to our group!

Let me start by saying Jadon is at the PERFECT age to begin his

treatment! He'll be hitting many growth spurts over the next mos

which should result in excellent & relatively fast correction.

It is uncommon for babies to cry, esp. consistantly cry like Jadon,

but it's not unheard of. Many babies need a bit longer than others to

adjust to wearing their new band. Hopefully, he'll adjust very soon.

Do the red spots you're describing fade w/i one hour of the band being

off? If not, then it sounds like an adjustment would be needed. If

they are completely fading w/i one hour, they consider that to be ok.

He shouldn't be in any pain from the band at all, esp. if the red

spots are fading w/i one hr of the band being off. It sounds like he

might just be irritated w/wearing it right now.

I can imagine how incredibally stressed out you are right now. I hope

he adjusts soon, very soon.

How is his torticollis progressing?

WElcome again It does get easier

Debbie Abby's mom DOCGrad

MI

> >

> > I am returning to the same facility but do have an different Ortho

> -- who works more with the helmets. I was told flat out that the

> Ortho I had initially does not have a lot of experience with the

> helmets. (A comfort, huh?!) Like I mentioned before, I am requested

> a new helmet to be made for Tyler as the one we have now is all cut up

> and out of wack!

> > 2 Tyler ?? Small world!

> >

>

> GREAT to hear this Trixie - you definitely sound to be heading in the

> right direction at long last. Can't wait to hear how your appt goes!

> I just want to commend you on being SO alert and knowing his band

> wasn't right. Great job - you could've wasted mos in that band had

> you not trusted your gut instincts - wish I would've been as smart as

> you Good job Mom!!!

> Something tells me there are a lot more than just 2 Tyler ' LOL

> I couldn't wait to take on the name - my maiden name is pretty

> unusual & hard to pronounce, but since then, it is just too

> confusing!! LOL I'll get the wrong prescriptions, wrong clothes at the

> cleaner...etc...!

> Debbie Abby's mom DOCGrad

> MI

>

Report post · February 22, 2003

Hi Teri,

Welcome to the group! If the red marks aren't fading within an hour

an adjustment is needed. I've never read of a band causing a baby to

cry non stop. It really sounds as if his band needs to be adjusted.

It is very common for the bands to need an adjustment or 2 or 3 in

the beginning of treatment. To be on the safe side I'd keep it off of

him until you can get in to see your ortho. Do you know how much

experience your ortho has? Your son is at a great age to get 100%

correction!! Please keep us posted and feel free to ask as many

questions as you need to!

> >

> > I am returning to the same facility but do have an different Ortho

> -- who works more with the helmets. I was told flat out that the

> Ortho I had initially does not have a lot of experience with the

> helmets. (A comfort, huh?!) Like I mentioned before, I am

requested

> a new helmet to be made for Tyler as the one we have now is all cut

up

> and out of wack!

> > 2 Tyler ?? Small world!

> >

>

> GREAT to hear this Trixie - you definitely sound to be heading in

the

> right direction at long last. Can't wait to hear how your appt

goes!

> I just want to commend you on being SO alert and knowing his band

> wasn't right. Great job - you could've wasted mos in that band had

> you not trusted your gut instincts - wish I would've been as smart

as

> you Good job Mom!!!

> Something tells me there are a lot more than just 2 Tyler '

LOL

> I couldn't wait to take on the name - my maiden name is pretty

> unusual & hard to pronounce, but since then, it is just too

> confusing!! LOL I'll get the wrong prescriptions, wrong clothes at

the

> cleaner...etc...!

> Debbie Abby's mom DOCGrad

> MI

>

Report post · February 22, 2003

Thanks for your quick responses. My mother's intuition was telling me that the crying wasn't normal, but I have to admit that I'd be crying too, if I had to wear that thing! I have total confidence in the clinician I'm working with. Like I said, they really pushed for trying to do this without the aid of the band, but told me when they felt it was necessary. I live in Atlanta and they are in conjunction with one of the leaders in Children's medicine. He really knows what he's talking about and the P.T. is working on her Doctorate with an emphasis in torticollis.

Unfortunately, the torticollis isn't improving as quickly as we had all hoped, which is why the band was necessary in the first place. He still really favors the right side. He has loosened up some, and since he is more interested now in his surroundings, he's turning his head more, but still sleeps with his head to the right and turns it to the right whenever he gets angry or upset. The physical therapy won't be complete any time soon!

Teri

From: " debbieandabby <dj2kirby@...> " <dj2kirby@...>

Reply-Plagiocephaly

Date: Sat, 22 Feb 2003 16:14:15 -0000

Plagiocephaly

Subject: Re: new member