first post

[Guest guest]

Hi ,

Welcome from your neighbor to the south (Calgary). Glad you found us

and congrats on starting the AP. Just so you know, we have a guy with

scleroderma in our local AP support group who has improved dramatically

on the AP (me gives us a demo each time as to how much more of his skin

has softened and had hair growth return - it's improved so much, the

demos are on the verge of showing just a little too much LOL). We also

have a lady with scleroderma who had severe lung involvement to the

point where she only had 30% lung capacity. After being on the AP for

only a short while, she is actually showing improvement in her lung

capacity and feels much better overall. I truly think you have made the

best decision for your health and I wish you great success. Make sure

you ask any questions, this group is great at answering.

Hugs

a

> Angus & Reszel wrote:

>

> Hello everyone, my name is I am from remote northern Alberta,

> Canada I have been following this list for a few months now and I am

> happy to say that I am now starting AP therapy.

> I had like most others, a big struggle finding a doctor, but the wait

> was worth the doc. I now have. I have systemic

> scleroderma with a lot of lung involment...

[Guest guest]

Hello ,

Welcome to the group

> studies then made my decision from there, I then told the doctor I wanted

> the AP therapy he wrote in my chart that I was unco-operative and never

> returned my call , sound familiar ?

Oh yes!

Chris.

[Guest guest]

Hi everyone,

I joined this list a long time ago, but have not been participating or

reading (sorry). I guess I have just been overwhelmed with the amount

of uncertainty I was always experiencing with getting a clear

diagnosis in the past. One doc said one thing, another claimed

something else, and another said something different again. I'm sure

many of you know what I mean.

With " Probable MS " lingering in my life for so many years, and then

the Rheumatologists telling me more different theories (some that

there was " nothing " wrong with me at all), I have been reluctant to

trust doctors. I trust few anyway.

So at my last Rheumo appt, my doc said I should be on Remicade. He

sent me home with a video and I have to watch it. I told him if my GI

agrees with him, I would seriously consider it. (I also have Colitis.)

At this point MS got ruled out based on my last MRI (all clear), and

my blood work points mostly toward Lupus. I also have Arthritis.

Rheumo doc says RA, but I don't have the positive RF. I have that

C-Reactive Protein. My ANA is always positive for Lupus. The arthritis

is obvious, and I can not really walk. I've had it since I was a kid.

So, is anyone here on Remicade and if so, can you tell me anything

about it? Sounds scary.

[Guest guest]

That's great that it's not MS. I can relate to what you have been

through. Like many others, I went through the hoops too!! I am on

remicade. I have been since last November. It really isn't as

scarey as some make it out to be. Like most RA drugs, it has it's

risks, the main one being the decreased resistance to infections,

especially TB. I work in a hospital and have been exposed to

patients with TB and have been doing fine. Your doses will be

adjusted acording to your response to treatment. either go to

www.remicare.com or call 1-866-REMICARE. They will send you more

information in the mail ( they even sent me a free fleece blanket

and they can set you up with some free magazine subscriptions!!).

It really isn't too bad. I go in every 4 weeks because I seem to be

resistant to the meds (including the pills I take). On average,

most people go 2 weeks after the 1st treatment, 4 weeks after that,

then every 8 weeks after that. It is infused through and IV. It

takes about 2 hours. I usually take a book or even my gameboy.

Most rhuemy's have an infusion center in their office or nearby.

Please feel free to email me if you wanna talk about it......Marina

> Hi everyone,

>

> I joined this list a long time ago, but have not been

participating or

> reading (sorry). I guess I have just been overwhelmed with the

amount

> of uncertainty I was always experiencing with getting a clear

> diagnosis in the past. One doc said one thing, another claimed

> something else, and another said something different again. I'm

sure

> many of you know what I mean.

>

> With " Probable MS " lingering in my life for so many years, and then

> the Rheumatologists telling me more different theories (some that

> there was " nothing " wrong with me at all), I have been reluctant to

> trust doctors. I trust few anyway.

>

> So at my last Rheumo appt, my doc said I should be on Remicade. He

> sent me home with a video and I have to watch it. I told him if my

GI

> agrees with him, I would seriously consider it. (I also have

Colitis.)

>

> At this point MS got ruled out based on my last MRI (all clear),

and

> my blood work points mostly toward Lupus. I also have Arthritis.

> Rheumo doc says RA, but I don't have the positive RF. I have that

> C-Reactive Protein. My ANA is always positive for Lupus. The

arthritis

> is obvious, and I can not really walk. I've had it since I was a

kid.

>

> So, is anyone here on Remicade and if so, can you tell me anything

> about it? Sounds scary.

[Guest guest]

Thanks Marina.

I appreciate your info. I am still scared though (just being honest).

I am also very phobic of meds in general. It takes me quite a while to

consider taking any medication. I do not take anything really for my

pain. I just live with it mostly, although I am on Neurontin, which I

swear by. But I take a very small dose in comparrison to most. I also

take Tylenol, Asacol for the colitis, and an occational Ultram when

pain is too much. Mostly distraction is the best thing for me. I do

not know how long I can keep it up like that though.

I have problems sleeping too and one Benedryl works for me on those

nights I can't fall asleep. 45 mins and I'm out.

Considering Remicade is a very big deal for me. I like to learn as

much as I can and consider the possible side effects. The video the

doc gave me was kinda lame. It did not go into all the possible

negatives and what can be done if any should occur. I need a mountain

of reassurance in order to feel safe. I want the cake and be able to

eat it and all that. Probably my denial talking now.

Thanks for the words. I'm still trying to read everyone's posts.

Carol

> That's great that it's not MS. I can relate to what you have been

> through. Like many others, I went through the hoops too!! I am on

> remicade. I have been since last November. It really isn't as

> scarey as some make it out to be. Like most RA drugs, it has it's

> risks, the main one being the decreased resistance to infections,

> especially TB. I work in a hospital and have been exposed to

> patients with TB and have been doing fine. Your doses will be

> adjusted acording to your response to treatment. either go to

> www.remicare.com or call 1-866-REMICARE. They will send you more

> information in the mail ( they even sent me a free fleece blanket

> and they can set you up with some free magazine subscriptions!!).

> It really isn't too bad. I go in every 4 weeks because I seem to be

> resistant to the meds (including the pills I take). On average,

> most people go 2 weeks after the 1st treatment, 4 weeks after that,

> then every 8 weeks after that. It is infused through and IV. It

> takes about 2 hours. I usually take a book or even my gameboy.

> Most rhuemy's have an infusion center in their office or nearby.

> Please feel free to email me if you wanna talk about it......Marina

[Guest guest]

I can empathize with you. CHeck out the remicade website and you

find of the information that you are looking for. Take Care...Marina

> Thanks Marina.

>

> I appreciate your info. I am still scared though (just being

honest).

> I am also very phobic of meds in general. It takes me quite a

while to

> consider taking any medication. I do not take anything really for

my

> pain. I just live with it mostly, although I am on Neurontin,

which I

> swear by. But I take a very small dose in comparrison to most. I

also

> take Tylenol, Asacol for the colitis, and an occational Ultram when

> pain is too much. Mostly distraction is the best thing for me. I do

> not know how long I can keep it up like that though.

>

> I have problems sleeping too and one Benedryl works for me on those

> nights I can't fall asleep. 45 mins and I'm out.

>

> Considering Remicade is a very big deal for me. I like to learn as

> much as I can and consider the possible side effects. The video the

> doc gave me was kinda lame. It did not go into all the possible

> negatives and what can be done if any should occur. I need a

mountain

> of reassurance in order to feel safe. I want the cake and be able

to

> eat it and all that. Probably my denial talking now.

>

> Thanks for the words. I'm still trying to read everyone's posts.

>

> Carol

>

>

>

> --- In , " marina_troi " <nefertiti@i...>

wrote:

> > That's great that it's not MS. I can relate to what you have

been

> > through. Like many others, I went through the hoops too!! I am

on

> > remicade. I have been since last November. It really isn't as

> > scarey as some make it out to be. Like most RA drugs, it has

it's

> > risks, the main one being the decreased resistance to

infections,

> > especially TB. I work in a hospital and have been exposed to

> > patients with TB and have been doing fine. Your doses will be

> > adjusted acording to your response to treatment. either go to

> > www.remicare.com or call 1-866-REMICARE. They will send you

more

> > information in the mail ( they even sent me a free fleece

blanket

> > and they can set you up with some free magazine

subscriptions!!).

> > It really isn't too bad. I go in every 4 weeks because I seem

to be

> > resistant to the meds (including the pills I take). On average,

> > most people go 2 weeks after the 1st treatment, 4 weeks after

that,

> > then every 8 weeks after that. It is infused through and IV.

It

> > takes about 2 hours. I usually take a book or even my gameboy.

> > Most rhuemy's have an infusion center in their office or

nearby.

> > Please feel free to email me if you wanna talk about

it......Marina

[Guest guest]

Glad you decided to post, Carol. Welcome!

Sorry that you've gone so long without getting good answers about your

diagnoses. I do indeed know your frustration.

We have several members who have used or are currently using Remicade

(infliximab) safely and successfully to treat their RA.

You didn't really say why MS was suspected, but caution before beginning

any of the anti-TNF therapies like Remicade is warranted in those with

MS or MS-like symptoms.

There have been several reports of neurological adverse events

suggestive of a demyelination disorder associated with both Remicade and

Enbrel.

Also, if you believe you have lupus rather than rheumatoid arthritis, at

this time, Remicade is not a recommend therapy for lupus. Since there

have been reports of patients newly developing antibodies commonly

associated with lupus and even some presenting with drug-induced lupus,

again, caution is strongly advised.

If one clearly has RA, Remicade is an excellent choice for a DMARD. It

should be used in conjunction with MTX in order to lessen the chances of

infusion reactions and the formation of antibodies to the Remicade

itself; Remicade plus MTX boosts the odds of Remicade's safety and

effectiveness.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] first post

>

> Hi everyone,

>

> I joined this list a long time ago, but have not been participating or

> reading (sorry). I guess I have just been overwhelmed with the amount

> of uncertainty I was always experiencing with getting a clear

> diagnosis in the past. One doc said one thing, another claimed

> something else, and another said something different again. I'm sure

> many of you know what I mean.

>

> With " Probable MS " lingering in my life for so many years, and then

> the Rheumatologists telling me more different theories (some that

> there was " nothing " wrong with me at all), I have been reluctant to

> trust doctors. I trust few anyway.

>

> So at my last Rheumo appt, my doc said I should be on Remicade. He

> sent me home with a video and I have to watch it. I told him if my GI

> agrees with him, I would seriously consider it. (I also have Colitis.)

>

> At this point MS got ruled out based on my last MRI (all clear), and

> my blood work points mostly toward Lupus. I also have Arthritis.

> Rheumo doc says RA, but I don't have the positive RF. I have that

> C-Reactive Protein. My ANA is always positive for Lupus. The arthritis

> is obvious, and I can not really walk. I've had it since I was a kid.

>

> So, is anyone here on Remicade and if so, can you tell me anything

> about it? Sounds scary.

[Guest guest]

In a message dated 14/08/2004 13:19:59 Central Standard Time,

artczar8@... writes:

> Considering Remicade is a very big deal for me. I like to learn as

> much as I can and consider the possible side effects. The video the

> doc gave me was kinda lame. It did not go into all the possible

> negatives and what can be done if any should occur. I need a mountain

> of reassurance in order to feel safe. I want the cake and be able to

> eat it and all that. Probably my denial talking now.

>

> Thanks for the words. I'm still trying to read everyone's posts.

>

> Carol

>

Hi Carol

I have been on Remicade for about two years. I was very afraid of it

initially. I'm a nurse, so I see patients with bad RA but also with med side

effects....so I did a lot of research. Do you have any specific questions?

is

the queen of web info, she can answer anything with a study, I can answer from

personal experience. Cary

[Guest guest]

In a message dated 17/08/2004 21:32:08 Central Standard Time, Birdijo@...

writes:

> is

> the queen of web info, she can answer anything with a study, I can answer

> from

> personal experience.

My apologies-

Due to a " brain fart " , I forgot to mention a......actually a and

are co-queens!!!! Cary

[Guest guest]

Cary,

I am also still considering one of the new drugs but the side effects seem

to be worse than not taking the drug. When I am in a flare, I feel I should

take something else, but it usually passes quickly and I do well on the

antibiotic treatment I've been on for 12 years.

My doctor even feels it is a catch 22. I don't want to have damaged joints

or deformities but I also don't want to worry about lymphoma or dying if I

get an infection - I've heard of someone with a sinus infection who didn't

even realize she had one and died on enbrel.

Thanks.

ette

>

[Guest guest]

Hi ette

The side effects that are possible with these drugs are very intimidating.

Then again, going from working 2 nursing jobs to being in a wheelchair on

disability is also pretty darned intimidating. I try to keep in mind what the

alternative is. I have not had ANY side effects from Remicade. I did from

Arava.

I had some diarrhea initially with Plaquenil but it went away. So I've been

lucky in that respect. I think it is important to compare apples to apples

here.....what will happen if I'm not on a DMARD? I won't be healthy. My RA

will progress. The risk of lymphoma is higher with RA regardless of what meds

you are on, that's why it's unclear whether that was truly a side

effect/adverse reaction or the RA higher risk showing up. Some on this list

have had

serious respiratory infections on Remicade. Before I started the Remicade my

hands

were so bad I couldn't make a fist or straighten them out. Inserting an IV

was physically impossible. I couldn't spike an IV bag or open med packets.

And forget lifting patients. So compared to that, some diarrhea wasn't a bad

trade off. It's a difficult, personal decision only you can make, although

sometimes the illness makes it for you. Good Luck, please let us know what you

end up doing. The more info we share with each other, the better it is for all

of us! Cary

In a message dated 18/08/2004 13:14:45 Central Standard Time,

wport@... writes:

> Cary,

>

> I am also still considering one of the new drugs but the side effects seem

> to be worse than not taking the drug. When I am in a flare, I feel I should

> take something else, but it usually passes quickly and I do well on the

> antibiotic treatment I've been on for 12 years.

>

> My doctor even feels it is a catch 22. I don't want to have damaged joints

> or deformities but I also don't want to worry about lymphoma or dying if I

> get an infection - I've heard of someone with a sinus infection who didn't

> even realize she had one and died on enbrel.

>

> Thanks.

> ette

>

[Guest guest]

LOL! I've never been called a co-queen before. Do we have to share some

kind of crown? Just for the record, has far surpassed me in her

knowledge. I still tend to read the alternative articles and nutrition.

Together we make a great team.

a

> In a message dated 17/08/2004 21:32:08 Central Standard Time, Birdijo@...

> writes:

>

>

>> is

>> the queen of web info, she can answer anything with a study, I can answer

>> from

>> personal experience.

>

> My apologies-

> Due to a " brain fart " , I forgot to mention a......actually a and

> are co-queens!!!! Cary

>

[Guest guest]

In a message dated 18/08/2004 21:56:01 Central Standard Time,

a54@... writes:

> Together we make a great team.

> a

>

Absolutely true! I know I appreciate you guys and this list more than I can

say. Cary

[Guest guest]

I am very impressed with your Ped. You are very lucky and will be in

and out of the helmet before you know it. You are starting at exactly

the correct time to get both the best correction and shortest time

period. If only the rest of us had been that lucky. It sounds like

your Orthotist is awesome as well and that is wonderful news. You

will see that the band is a pretty easy process. The Tort stretching

is a little more involved, but 3x per week is excellent and I bet you

are resolved in no time. Congrats!

>

> Hey I am a new member. My 3 month old was just diagnosed with

> plagiocephaly and torticollis (sp?) a week ago. We went to a great

(from

> my opinion) pediatric orthotics and prosthetics specialist here

locally

> and he has 16 years overall cranial remolding experience with over

7

> years of the STARband experience. He has treated over 500 patients.

>

> He didn't think her neck was quite strong enough yet to support the

> helmet (she's newly 3 months) and so he has rescheduled us to come

in

> for the fitting in a month. I'm waiting on the referral for physical

> therapy to come through from the pediatrician and then we'll start

that.

>

> The orthotics doctor thinks she will need PT 3 times a week, and he

said

> she will be coming to him every 2 weeks for helmet adjustments

during

> her period of treatment with him (which he estimates to be between

3 and

> 5 months).

>

> I guess I'm just looking for some support and answers because I

really

> just don't understand much of this. I feel like it's all being

thrown at

> me. (She's also got another health concern that isn't related to

this.)

> I'm not sure if her conditions are moderate or severe, like I

mentioned

> I'm overwhelmed with everything I'm being told but I do have the

paper

> with all the numbers on it from him linked below.

>

> Looking forward to getting to know you guys better.

> -- *Stay At Home Mom Cassidy (9-29-03) and (5-25-

07)*

>

> Info/Stat Sheet From Our First Visit

>

<http://img.photobucket.com/albums/v29/PajamaPrincess/FirstStats.

jp\

> g>

>

[Guest guest]

I agree with . That is so great that you will

be catching all of this so early. That helps so much.

My son is 11 months and we are just now getting

started with the badn and still trying to resolve

torticollis completely. I highly reccomend doing the

stretches your pt tells you to do at home as much as

possible and you will see results faster. I felt

overwhelmed at the beginning as well, and with that

put things off and I wish I hadnt. Feel free to get

support here!

Tricia

--- timkris724 <timkris724@...> wrote:

> I am very impressed with your Ped. You are very

> lucky and will be in

> and out of the helmet before you know it. You are

> starting at exactly

> the correct time to get both the best correction and

> shortest time

> period. If only the rest of us had been that lucky.

> It sounds like

> your Orthotist is awesome as well and that is

> wonderful news. You

> will see that the band is a pretty easy process. The

> Tort stretching

> is a little more involved, but 3x per week is

> excellent and I bet you

> are resolved in no time. Congrats!

>

>

>

> >

> > Hey I am a new member. My 3 month old was just

> diagnosed with

> > plagiocephaly and torticollis (sp?) a week ago. We

> went to a great

> (from

> > my opinion) pediatric orthotics and prosthetics

> specialist here

> locally

> > and he has 16 years overall cranial remolding

> experience with over

> 7

> > years of the STARband experience. He has treated

> over 500 patients.

> >

> > He didn't think her neck was quite strong enough

> yet to support the

> > helmet (she's newly 3 months) and so he has

> rescheduled us to come

> in

> > for the fitting in a month. I'm waiting on the

> referral for physical

> > therapy to come through from the pediatrician and

> then we'll start

> that.

> >

> > The orthotics doctor thinks she will need PT 3

> times a week, and he

> said

> > she will be coming to him every 2 weeks for helmet

> adjustments

> during

> > her period of treatment with him (which he

> estimates to be between

> 3 and

> > 5 months).

> >

> > I guess I'm just looking for some support and

> answers because I

> really

> > just don't understand much of this. I feel like

> it's all being

> thrown at

> > me. (She's also got another health concern that

> isn't related to

> this.)

> > I'm not sure if her conditions are moderate or

> severe, like I

> mentioned

> > I'm overwhelmed with everything I'm being told but

> I do have the

> paper

> > with all the numbers on it from him linked below.

> >

> > Looking forward to getting to know you guys

> better.

> > -- *Stay At Home Mom Cassidy (9-29-03)

> and (5-25-

> 07)*

> >

> > Info/Stat Sheet From Our First Visit

> >

>

<http://img.photobucket.com/albums/v29/PajamaPrincess/FirstStats.

> jp\

> > g>

> >

>

>

>

><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

________________________________________________________________________________\

____

Sick sense of humor? Visit TV's

Comedy with an Edge to see what's on, when.

http://tv./collections/222

[Guest guest]

>

> Hey I am a new member. My 3 month old was just diagnosed with

> plagiocephaly and torticollis (sp?) a week ago. We went to a great

(from

> my opinion) pediatric orthotics and prosthetics specialist here

locally

> and he has 16 years overall cranial remolding experience with over

7

> years of the STARband experience. He has treated over 500 patients.

>

> He didn't think her neck was quite strong enough yet to support the

> helmet (she's newly 3 months) and so he has rescheduled us to come

in

> for the fitting in a month. I'm waiting on the referral for physical

> therapy to come through from the pediatrician and then we'll start

that.

>

> The orthotics doctor thinks she will need PT 3 times a week, and he

said

> she will be coming to him every 2 weeks for helmet adjustments

during

> her period of treatment with him (which he estimates to be between

3 and

> 5 months).

>

> I guess I'm just looking for some support and answers because I

really

> just don't understand much of this. I feel like it's all being

thrown at

> me. (She's also got another health concern that isn't related to

this.)

> I'm not sure if her conditions are moderate or severe, like I

mentioned

> I'm overwhelmed with everything I'm being told but I do have the

paper

> with all the numbers on it from him linked below.

>

> Looking forward to getting to know you guys better.

> -- *Stay At Home Mom Cassidy (9-29-03) and (5-25-

07)*

>

> Info/Stat Sheet From Our First Visit

>

<http://img.photobucket.com/albums/v29/PajamaPrincess/FirstStats.

jp\

> g>

>sorry to hear about yor babys condition. i agree when we wee fnall

able to get a referral to specialist we felt like there was so much

being thrown at us at home therapy for tortcollis being itted for a

helmet othly trips to portland or a 4 1/2 hour drive away. our

daughter has a seere condition of plagio she is alost 12 mm a-

symtrical. its great you ae going to be able to start treatment

early. my daughters dr just kept tlling us ont worry it will

fixitserlf w chaned dr ad got a referral and had to have a asap

apintment because my daughter is almost 7 months old and they said it

was critical she get it soon. i found this group t be aot of help

just hearing the wonderfullsuccess sories good luck with te month to

come.

[Guest guest]

Welcome !

This is a great group! If you have a specific question feel free to throw it out there - You can also search thru old messages to see what has been discussed in the past.

Jen and Luli - 21 months

Left tort - Right Plagio - Hanger Band Grad - CA

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

First Post

Hey I am a new member. My 3 month old was just diagnosed with plagiocephaly and torticollis (sp?) a week ago. We went to a great (from my opinion) pediatric orthotics and prosthetics specialist here locally and he has 16 years overall cranial remolding experience with over 7 years of the STARband experience. He has treated over 500 patients.

He didn't think her neck was quite strong enough yet to support the helmet (she's newly 3 months) and so he has rescheduled us to come in for the fitting in a month. I'm waiting on the referral for physical therapy to come through from the pediatrician and then we'll start that.

The orthotics doctor thinks she will need PT 3 times a week, and he said she will be coming to him every 2 weeks for helmet adjustments during her period of treatment with him (which he estimates to be between 3 and 5 months).

I guess I'm just looking for some support and answers because I really just don't understand much of this. I feel like it's all being thrown at me. (She's also got another health concern that isn't related to this.) I'm not sure if her conditions are moderate or severe, like I mentioned I'm overwhelmed with everything I'm being told but I do have the paper with all the numbers on it from him linked below.

Looking forward to getting to know you guys better.

-- *Stay At Home Mom Cassidy (9-29-03) and (5-25-07)*

Info/Stat Sheet From Our First Visit

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

Hi ,

My 10 mo. old daughter was diagnosed with Tort. and Plagio. at 3

months as well. She has been wearing her helmet for 5 months now.

The first 3 months we saw changes. The last 2 months I have seen

little change. It is all based on growing spurts. She is only in

the 12 percentile for height. You may see amazing results if she

grows quickly. We all have extremely different children on this

website.

May I ask what her other condition is? My daughter has hypotonia as

well as the Tort. She is rather delayed in some of her development

as she does not have the muscle strength. However, we see constant

improvement. " They " say she should be caught up by 18 mos. We will

see...

My only advise is to be positive and keep reading the posts. I went

from crying every day to feeling that there is hope because of this

website. The people on this site are wonderful. I have learned so

much about my daughters condition. It has given me hope. My

daughter gives me hope as well. Her physical therapy has made some

amazing changes with her Tort. and over all development.

Good Luck to you and your family.

Take Care,

Kristi, mother to Ellie 10 mos. Tort./Plagio

La Quinta, CA

> >

> > Hey I am a new member. My 3 month old was just diagnosed with

> > plagiocephaly and torticollis (sp?) a week ago. We went to a

great (from

> > my opinion) pediatric orthotics and prosthetics specialist here

locally

> > and he has 16 years overall cranial remolding experience with

over 7

> > years of the STARband experience. He has treated over 500

patients.

> >

> > He didn't think her neck was quite strong enough yet to support

the

> > helmet (she's newly 3 months) and so he has rescheduled us to

come in

> > for the fitting in a month. I'm waiting on the referral for

physical

> > therapy to come through from the pediatrician and then we'll

start that.

> >

> > The orthotics doctor thinks she will need PT 3 times a week, and

he said

> > she will be coming to him every 2 weeks for helmet adjustments

during

> > her period of treatment with him (which he estimates to be

between 3 and

> > 5 months).

> >

> > I guess I'm just looking for some support and answers because I

really

> > just don't understand much of this. I feel like it's all being

thrown at

> > me. (She's also got another health concern that isn't related to

this.)

> > I'm not sure if her conditions are moderate or severe, like I

mentioned

> > I'm overwhelmed with everything I'm being told but I do have the

paper

> > with all the numbers on it from him linked below.

> >

> > Looking forward to getting to know you guys better.

> > -- *Stay At Home Mom Cassidy (9-29-03) and (5-

25-07)*

> >

> > Info/Stat Sheet From Our First Visit

> >

>

<http://img.photobucket.com/albums/v29/PajamaPrincess/FirstStats.

jp\

> > g>

> >

>

[Guest guest]

Kristi,

May I ask why 5 months? How many bands is this?

> > >

> > > Hey I am a new member. My 3 month old was just diagnosed with

> > > plagiocephaly and torticollis (sp?) a week ago. We went to a

> great (from

> > > my opinion) pediatric orthotics and prosthetics specialist

here

> locally

> > > and he has 16 years overall cranial remolding experience with

> over 7

> > > years of the STARband experience. He has treated over 500

> patients.

> > >

> > > He didn't think her neck was quite strong enough yet to

support

> the

> > > helmet (she's newly 3 months) and so he has rescheduled us to

> come in

> > > for the fitting in a month. I'm waiting on the referral for

> physical

> > > therapy to come through from the pediatrician and then we'll

> start that.

> > >

> > > The orthotics doctor thinks she will need PT 3 times a week,

and

> he said

> > > she will be coming to him every 2 weeks for helmet adjustments

> during

> > > her period of treatment with him (which he estimates to be

> between 3 and

> > > 5 months).

> > >

> > > I guess I'm just looking for some support and answers because

I

> really

> > > just don't understand much of this. I feel like it's all being

> thrown at

> > > me. (She's also got another health concern that isn't related

to

> this.)

> > > I'm not sure if her conditions are moderate or severe, like I

> mentioned

> > > I'm overwhelmed with everything I'm being told but I do have

the

> paper

> > > with all the numbers on it from him linked below.

> > >

> > > Looking forward to getting to know you guys better.

> > > -- *Stay At Home Mom Cassidy (9-29-03) and

(5-

> 25-07)*

> > >

> > > Info/Stat Sheet From Our First Visit

> > >

> >

>

<http://img.photobucket.com/albums/v29/PajamaPrincess/FirstStats

..

> jp\

> > > g>

> > >

> >

>