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Sent: Friday, September 03, 1999 3:54 AM

Subject: rheumatic hello

Anyone awake? I am - wide awake. Wanna talk?

Hey ,

YOu need to get on ICQ and find someone who is up at 3 am to chat!

a Carnes

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Hey,

Because I have a systemic inflammatory disease, I'm usually asleep at 3:54

AM ;)

(Actually, that is precisely the time I wake up if I'm having pain

problems--I stay in bed, though)

Jean

----------

From: a Carnes <paulajeanne@...>

rheumaticlist <rheumaticonelist>

Subject: Re: rheumatic hello

Date: Fri, Sep 3, 1999, 11:38 AM

Sent: Friday, September 03, 1999 3:54 AM

Subject: rheumatic hello

Anyone awake? I am - wide awake. Wanna talk?

Hey ,

YOu need to get on ICQ and find someone who is up at 3 am to chat!

a Carnes

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  • 2 years later...
Guest guest

> Hi!

>

> I am new to this group and wanted to introduce myself. My name is

> Ursula and I am a speech pathologist. I was just wondering if any

> SLPs or parents have been to any good conferences on apraxia

> recently. I am a new convention committee member for New

> Jersey Speech Language and Hearing Association and we are looking for

> recommendations. Any info would be greatly appreciated!!

>

> I also want to thank all of you who have already responded! Thanks,

> and for all of you great info!

>

> Thank you!

> Ursula

We were fortunate to have Pamela Marhalla to an intensive workshop (1

day) for our speech/language dept. (Waukegan, Il public schools). I know

she travels around the country. Her phone number is 425-828-4361.

Hope this helps.

Phyllis Siegel

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Guest guest

Hi. My name is nicki foggin and I too am an slp. Let me know of any good

conferences/speakers--i'm very interested. i have heard a lot about the PROMPt

technique. This is a great group!

----- Original Message -----

Hi!

I am new to this group and wanted to introduce myself. My name is

Ursula and I am a speech pathologist. I was just wondering if any

SLPs or parents have been to any good conferences on apraxia

recently. I am a new convention committee member for New

Jersey Speech Language and Hearing Association and we are looking for

recommendations. Any info would be greatly appreciated!!

I also want to thank all of you who have already responded! Thanks,

and for all of you great info!

Thank you!

Ursula

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  • 2 months later...

Hi Mabel,

Three different doctors have said that I "might" have relapsing polychondritis, or RP in addition to dermatomyosits or DM. For the past three years or so I've been researching RP and conversing with people from a couple of groups on ....in addition to my "home" groups at rheumatic and www.rheumatic.org . The rheumatic groups have been with me for over four years, and I've even met some of them! I think the reason that the doctors cannot get a definitive diagnosis of RP is because I am doing so well on the antibiotic protocol, or AP. When you have the time, read my story at http://www.rheumatic.org/connie.htm

I've learned that RP is generally treated in the same manner as many connective tissue diseases, or rheumatic diseases, or even "auto-immune" diseases........they are all the same, more or less.......treated with prednisone and immune suppressants by most doctors, but increasingly treated with antibiotics by more and more physicians. I also learned that Dr. Trentham from Beth Israel Hospital (affiliated with Harvard U) not only is an expert on RP, but knowledgeable on using the antibiotic protocol......even for RP in some cases. RP is a nasty disease, no getting around that! I truly believe that I would be in a whole world of hurt had it not been for the AP. One of my first symptoms was a cough.......from hell! It is hard to describe just how often I coughed, more than a hundred times per day, and often, uncontrollably for 10 minutes at a time. Sure, prednisone would control it, but did I want to take prednisone indefinitely?.......no! I found that the AP, in the form of Minocin to a certain degree, and especially with the addition of Zithromax and then Biaxin, instead of the Zithromax, got the cough under control. To quote many from this group..."I got my life back!"

To answer your questions, yes! RP frequently involves red ears, (excluding the ear lobe in most cases,) and yes! it frequently involves a red nose. You can get more information from Rutledge, a member of this group who is interested in the AP. has lots of experience with RP and has researched it extensively. She has a website at www.polychondritis.com . There is also information from another group at www.polychondritis.org . Again, I mention www.emedicine.com it is a wealth of information. When you get logged in, search under "polychondritis".

The main thing to remember, Mabel, is that you can make your own choice in treatment. Sure, the "conservative" way to go is with the conventional treatments of prednisone and immune suppressants. There are many people, including myself, who used to obediently follow doctors orders, without question. Well, not anymore! I have learned that this antibiotic treatment has, with proper direction, the means to getting me back to a healthy member of society. I will no longer blindly follow doctors' orders, without looking at all of the options. If a doctor is unwilling to discuss the antibiotic protocol, I am unwilling to have that person as my doctor. I have found that the AP has the ability to treat the actual cause of the disease, not mask the symptoms, as with the conventional treatment.

I'm very happy you are here, Mabel! Take care,

Connie :-)

Re: rheumatic Re: Hello

Please tell me more. Are you talking about redness of the outer ear? What about redness of the nose? I have had recurring redness for well over 10 years and even have asked several doctors about it. Where can I get more info. Thanks for alerting us to this condition. Mabel conniehache wrote: Hi ,There's another RA type of disease called Relapsing Polychondritis. It's "calling card" is often red, painful ears...sometimes only painful, sometimes only red, sometimes not at all, etc....with these diseases there are so many variables. RP is rare, but that doesn't mean people won't get it. If you do have RP, the antibiotic therapy will help that, too. In many cases, people have not only RA, but any of the 100+ other diseases in the rheumatic disease family. Dr. Trentham not only uses the antibiotic therapy for some patients, he is also an expert on RP. You can find more information at http://www.Polychondritis.com And also search for "polychondritis" at www.emedicine.com You might have to register at that site, but it is free.Take care,Connie> Hello> Has anyone with RA experienced an earache from time to time. I'm trying to figure out if there might be another infection going on that might interfere with the antibiotic therapy.> Thanks for any info.

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  • 1 month later...

Hi, Welcome.

I am relatively new also. I have a son who, among other issues, is also

severly expressive speech delayed. He is almost three and says no words. I

have already gotten alot of important information from this board, and also

don't feel so alone anymore.

Sincerely,

Heidi, mommy of

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Hello there,

When you take your daughter to the ped. neurologist he

will be looking for several things. He will do a

thorough history of your daughter with you and your

husband. When I say thorough it takes about 1 1/2

hours. Then he will discuss what plans he(she) has to

check further into your daughter's speech delay. They

asked simple questions like - when did you first

notice a problem, did you notice feeding issues, etc.

etc. It's really not that big of a deal, but if you

have your daughter's IEP from the school district you

should take that and any other paper work from other

therapists and doctors with you. They may order an

EEG (to check for seizure activity) and then an MRI

(To check for brain damage). I am currently going

through this and it is not as scary as it sounds.

Just relax and take it one step at a time.

Kim

Mom to Carissa - age 9 going on 19, and JJ 22 months,

apraxia, aphasia and most recently mild to moderate

autism.

--- jmcl4hs <jmcl4hs@...> wrote:

>They

> would like me to take her to a pediatric neurologist

> also. I am

> wanting to find out what the pediatric neurologist

> would look for.

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Hi jmcl4hs

I can't comment on the benefits of a pediatric neurologist but I did want to

mention that I, as well as many others on this group, take our children to a

neurodevelopmental pediatrician. They seem to be the best type of doctor to

look at and diagnose your entire child. They view your child from many

different angles and put together a comprehensive report of exactly where you

are and where you need to go. I find that they see and understand things that

some other doctors may have missed. For instance, my son always sat with his

legs in a " W " position. I never thought twice about this but my neurodev. ped.

picked up on that and because of that and a few other things that I never

realized, diagnosed him with hypotonia.

Good luck in whichever you see but I just wanted to mention the

neurodevelopmental pediatrician because I know that when my son was first

diagnosed, I had never even heard of one, much less knew what they were. I have

found my neurodev. ped. guidance to be a key factor in my son's success.

Best of luck and welcome to the group!

in NJ

kdr@...

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Kim, thanks for your post--it's perfect timing for me because I am taking

Kara to see a pediatric neurologist on Nov. 21st--I made this appointment in

July! To jmc14hs, (sorry, I don't think you signed your name), I'll let you

know what happens. I've questions all along whether or not I should keep

this appointment, but read enough on this list to convince me that I still

should go.

Again, Kim, thanks for your post--I've printed to use it as a checklist

when I go! I was planning to bring Kara's assessment report; not sure I

would have remembered to bring her actual IEP form, though.

We are now 2 months into our routine of private therapy with a

PROMPT-certified therapist once a week, and therapy twice a week through the

school district. I think she's making progress; it's hard to tell at this

point but I am hopeful. She is talking a lot, for which I am thankful--we

started Pro-Efa the week after I joined this list (last spring) and her

speech took off soon after.

Welcome also to the newer members; indeed, you're not alone.

Take care,

Janice

mom to Kara, age 3.5, phonological processing disorder, moderate speech

impairment, mild apraxia, doing great!

mom to Liana, age 6.5

From: Kim Stroh <propanegirl@...>

Hello there,

When you take your daughter to the ped. neurologist he

will be looking for several things. He will do a

thorough history of your daughter with you and your

husband. When I say thorough it takes about 1 1/2

hours. Then he will discuss what plans he(she) has to

check further into your daughter's speech delay. They

asked simple questions like - when did you first

notice a problem, did you notice feeding issues, etc.

etc. It's really not that big of a deal, but if you

have your daughter's IEP from the school district you

should take that and any other paper work from other

therapists and doctors with you. They may order an

EEG (to check for seizure activity) and then an MRI

(To check for brain damage). I am currently going

through this and it is not as scary as it sounds.

Just relax and take it one step at a time.

Kim

Mom to Carissa - age 9 going on 19, and JJ 22 months,

apraxia, aphasia and most recently mild to moderate

autism.

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I'm glad that I could help Janice, and I will be

taking JJ for his MRI on the 21st of this month and I

will let you know how that goes. Believe me I had all

kinds of thoughts in my mind before I took him to his

first appointment.

Talk to you soon,

Kim

--- Janice <janicermiller@...> wrote:

> Kim, thanks for your post--it's perfect timing for

> me because I am taking

> Kara to see a pediatric neurologist on Nov. 21st--

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  • 1 month later...

Hi Kim....where to we go to see posted pictures?

(mom of 34 mth old & 7 1/2 mth old Chase)

[ ] Hello

Well,

JJ's second MRI is scheduled for March 5, 2003. They will be

checking how herniated his Chiari is and if he needs surgery.

On other fronts, I have decided to put his PECS training off as he is

becoming so fluent with his signs. Lately he has probably added

about 5 signs to his already pretty good vocabulary of 15. Also, he

has become a little more verbal at Early Intervention. He has been

saying ball and gotta go (potty training).

I posted his Christmas picture if anyone cares to look.

If I don't talk to you all - HAVE A MERRY CHRISTMAS!

Kim - mom to Carissa - age 9 and JJ, almost 2, Chiari 1, apraxia, and

now trying to rule out autism

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Hi ,

At the group's start up page on the left hand side it

says photos - you can click on there and it is loaded

there. http://photos./group/ /lst

Kim - mom to Carissa age 9 and JJ age 23 1/2 months

--- Godwin <cwg1@...> wrote:

> Hi Kim....where to we go to see posted pictures?

>

> (mom of 34 mth old & 7 1/2 mth old

> Chase)

> ----- Original Message -----

>

> Well,

> JJ's second MRI is scheduled for March 5, 2003.

> They will be

> checking how herniated his Chiari is and if he

> needs surgery.

>

> On other fronts, I have decided to put his PECS

> training off as he is

> becoming so fluent with his signs. Lately he has

> probably added

> about 5 signs to his already pretty good

> vocabulary of 15. Also, he

> has become a little more verbal at Early

> Intervention. He has been

> saying ball and gotta go (potty training).

>

> I posted his Christmas picture if anyone cares to

> look.

>

> If I don't talk to you all - HAVE A MERRY

> CHRISTMAS!

>

> Kim - mom to Carissa - age 9 and JJ, almost 2,

> Chiari 1, apraxia, and

> now trying to rule out autism

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Kim....Oh my goodness....I love the pictures; how precious! Adorable! I'm

going to try to see if I can figure out how to load a picture of as well

although, I'm not very computer savvy.

----- Original Message -----

Hi ,

At the group's start up page on the left hand side it

says photos - you can click on there and it is loaded

there. http://photos./group/ /lst

Kim - mom to Carissa age 9 and JJ age 23 1/2 months

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I did it - Yeah! I posted 's picture also on:

http://photos./group/ /lst

Check it out...you all can see the little boy that you've been helping.

is the one on the right with Santa.

Thanks again.... (mom of 34 mth old & 7 1/2 mth old Chase)

Re: [ ] Hello

Hi ,

At the group's start up page on the left hand side it

says photos - you can click on there and it is loaded

there. http://photos./group/ /lst

Kim - mom to Carissa age 9 and JJ age 23 1/2 months

--- Godwin <cwg1@...> wrote:

> Hi Kim....where to we go to see posted pictures?

>

> (mom of 34 mth old & 7 1/2 mth old

> Chase)

> ----- Original Message -----

>

> Well,

> JJ's second MRI is scheduled for March 5, 2003.

> They will be

> checking how herniated his Chiari is and if he

> needs surgery.

>

> On other fronts, I have decided to put his PECS

> training off as he is

> becoming so fluent with his signs. Lately he has

> probably added

> about 5 signs to his already pretty good

> vocabulary of 15. Also, he

> has become a little more verbal at Early

> Intervention. He has been

> saying ball and gotta go (potty training).

>

> I posted his Christmas picture if anyone cares to

> look.

>

> If I don't talk to you all - HAVE A MERRY

> CHRISTMAS!

>

> Kim - mom to Carissa - age 9 and JJ, almost 2,

> Chiari 1, apraxia, and

> now trying to rule out autism

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  • 11 months later...

Hi Sherril!

Of course I remember you! Wow it's so great to hear from you -I'm

sure I'll see you at a conference in NJ -or if you ever visit

Florida let me know!

About the verbal based tests in The Late Talker book -all those for

the neurodevelopmental medical doctors are nonverbal tests. When

the book was written we put it in -but it's not stressed as clear as

it will be in the paperback. We have updates to the receptive tests

done by SLPs. It would take another book to explain how the testing

should be done -so we have the key points in there.

As you know since you know me -I've spoken to all kinds of

people/organizations about this -and the problem is that it's such a

huge and rampant problem that's gone on for so long -that it's going

to take a bit of time and work to stop....but we will.

As Dr. Tallal said -even the nonverbal tests have flaws. I'm sure

that too can be fixed.

I would love to speak with you. Email me at lisa@... with

your number and I'll call you. Looking forward to speaking with you!

=====

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  • 1 year later...
Guest guest

Welcome Trisha,

We have a folder here on decorating, it's in the files section. We

didn't paint(too afraid of ruining the band,lol), but alot of people

do. We used rub on transfers from the craft store and then two coats

of Mod Podge over them to seal them. Yes the stickers can be changed

by peeling them, but I think if you paint the paint should stay on

even if you change the stickers. Take a look in the photos section at

the different bands and get some ideas too. About him taking the band

off, my son is 8 months and never takes his band off. This is his

second band and we have never had that problem, so I will hope that

you are as lucky. I did read where some moms used a piece of duct tape

across the velcro so they cannot open it, if you need to. Hope tha

helps.....

CAROLG

> Hi,

>

> I just wanted to let you know that we have joined the group. Our

son,

> is 8 months old and is getting his Doc Band on Tuesday.

>

> We've heard conflicting advice about decorations. Should we paint or

> not? I was thinking that stickers would be easier and better for

making

> changes over time.

>

> The orthotist mentioned that he would be able to take the helmet

off,

> what have you done to keep this from happening?

>

> Trisha

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Guest guest

Welcome Trisha,

We have a folder here on decorating, it's in the files section. We

didn't paint(too afraid of ruining the band,lol), but alot of people

do. We used rub on transfers from the craft store and then two coats

of Mod Podge over them to seal them. Yes the stickers can be changed

by peeling them, but I think if you paint the paint should stay on

even if you change the stickers. Take a look in the photos section at

the different bands and get some ideas too. About him taking the band

off, my son is 8 months and never takes his band off. This is his

second band and we have never had that problem, so I will hope that

you are as lucky. I did read where some moms used a piece of duct tape

across the velcro so they cannot open it, if you need to. Hope tha

helps.....

CAROLG

> Hi,

>

> I just wanted to let you know that we have joined the group. Our

son,

> is 8 months old and is getting his Doc Band on Tuesday.

>

> We've heard conflicting advice about decorations. Should we paint or

> not? I was thinking that stickers would be easier and better for

making

> changes over time.

>

> The orthotist mentioned that he would be able to take the helmet

off,

> what have you done to keep this from happening?

>

> Trisha

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Guest guest

Hi, Trisha. Kennedy got her DOC band at almost 7 months and we never had a problem with her even attempting to remove it so I can't help you there. I will tell you that I opted for stickers as I get bored with things pretty quickly and liked the option of the easy change. There are a lot of cute painted bands though. I changed Kennedy's stickers every week to every other week and it was really easy. I didn;t seal them with anything and had few problems. The stickers I found that worked best were the ones in the scrap booking section of stores like Hobby Lobby. The clear backed ones peeled less and the smaller stickers seemed to work better due to the roundness of the band. I had a lot of fun with it. There are a lot of cute summer stickers too. "Stickopotomus" and "Me & My Big Ideas" brand stickers were my favorites. Have a great time and let your creativity run wild.

Welcome!

Christy - mom to 1 year old Kennedy

DOC band grad 11/23/04 - 2/11/05

Tulsa, OkTrisha and <chicograds@...> wrote:

Hi, I just wanted to let you know that we have joined the group. Our son, is 8 months old and is getting his Doc Band on Tuesday. We've heard conflicting advice about decorations. Should we paint or not? I was thinking that stickers would be easier and better for making changes over time. The orthotist mentioned that he would be able to take the helmet off, what have you done to keep this from happening?TrishaFor more plagio info

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Guest guest

Hi, Trisha. Kennedy got her DOC band at almost 7 months and we never had a problem with her even attempting to remove it so I can't help you there. I will tell you that I opted for stickers as I get bored with things pretty quickly and liked the option of the easy change. There are a lot of cute painted bands though. I changed Kennedy's stickers every week to every other week and it was really easy. I didn;t seal them with anything and had few problems. The stickers I found that worked best were the ones in the scrap booking section of stores like Hobby Lobby. The clear backed ones peeled less and the smaller stickers seemed to work better due to the roundness of the band. I had a lot of fun with it. There are a lot of cute summer stickers too. "Stickopotomus" and "Me & My Big Ideas" brand stickers were my favorites. Have a great time and let your creativity run wild.

Welcome!

Christy - mom to 1 year old Kennedy

DOC band grad 11/23/04 - 2/11/05

Tulsa, OkTrisha and <chicograds@...> wrote:

Hi, I just wanted to let you know that we have joined the group. Our son, is 8 months old and is getting his Doc Band on Tuesday. We've heard conflicting advice about decorations. Should we paint or not? I was thinking that stickers would be easier and better for making changes over time. The orthotist mentioned that he would be able to take the helmet off, what have you done to keep this from happening?TrishaFor more plagio info

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Guest guest

Hi Trisha,

Welcome to the group! Most babies do not try to take the band off at

all, but if it does become a problem, you can add a barrette or safety

pin to the velcro or duct tape it if he's really a houdini! As far as

decorating, I never painted b/c I wanted to be able to change the

decorations frequently. I used stickers w/a couple coats of glossy

mod podge over them. Clear back stickers are best and if you do seal

them they'll easily last weeks if you want them too. I often ordered

stickers from www.scrapbookbargain.com . Lots of Hannah's decorated

bands can be seen on her website below if you're interested. We

always got asked who painted it b/c the clear backed stickers look so

good! Have fun with it and let us know how Tuesday goes!

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

> Hi,

>

> I just wanted to let you know that we have joined the group. Our

son,

> is 8 months old and is getting his Doc Band on Tuesday.

>

> We've heard conflicting advice about decorations. Should we paint or

> not? I was thinking that stickers would be easier and better for

making

> changes over time.

>

> The orthotist mentioned that he would be able to take the helmet

off,

> what have you done to keep this from happening?

>

> Trisha

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Guest guest

Hi Trisha,

Welcome to the group! Most babies do not try to take the band off at

all, but if it does become a problem, you can add a barrette or safety

pin to the velcro or duct tape it if he's really a houdini! As far as

decorating, I never painted b/c I wanted to be able to change the

decorations frequently. I used stickers w/a couple coats of glossy

mod podge over them. Clear back stickers are best and if you do seal

them they'll easily last weeks if you want them too. I often ordered

stickers from www.scrapbookbargain.com . Lots of Hannah's decorated

bands can be seen on her website below if you're interested. We

always got asked who painted it b/c the clear backed stickers look so

good! Have fun with it and let us know how Tuesday goes!

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

> Hi,

>

> I just wanted to let you know that we have joined the group. Our

son,

> is 8 months old and is getting his Doc Band on Tuesday.

>

> We've heard conflicting advice about decorations. Should we paint or

> not? I was thinking that stickers would be easier and better for

making

> changes over time.

>

> The orthotist mentioned that he would be able to take the helmet

off,

> what have you done to keep this from happening?

>

> Trisha

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Guest guest

hi Trisha,

My daughter had a DOC band (well 2). The first I painted. It chipped a little. It took a few hours to get it all done. We have tips in the files section under decorating. The 2nd band I painted then when it started chipping I peeled it all off and went with stickers. I loved changing stickers every week Stickers are basically a no-brainer and if you don't like it you've only invested a few minutes.

mom to na

DOC Grad

www.thefilyaws.comTrisha and <chicograds@...> wrote:

Hi, I just wanted to let you know that we have joined the group. Our son, is 8 months old and is getting his Doc Band on Tuesday. We've heard conflicting advice about decorations. Should we paint or not? I was thinking that stickers would be easier and better for making changes over time. The orthotist mentioned that he would be able to take the helmet off, what have you done to keep this from happening?TrishaFor more plagio info

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Guest guest

hi Trisha,

My daughter had a DOC band (well 2). The first I painted. It chipped a little. It took a few hours to get it all done. We have tips in the files section under decorating. The 2nd band I painted then when it started chipping I peeled it all off and went with stickers. I loved changing stickers every week Stickers are basically a no-brainer and if you don't like it you've only invested a few minutes.

mom to na

DOC Grad

www.thefilyaws.comTrisha and <chicograds@...> wrote:

Hi, I just wanted to let you know that we have joined the group. Our son, is 8 months old and is getting his Doc Band on Tuesday. We've heard conflicting advice about decorations. Should we paint or not? I was thinking that stickers would be easier and better for making changes over time. The orthotist mentioned that he would be able to take the helmet off, what have you done to keep this from happening?TrishaFor more plagio info

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  • 3 months later...

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