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Hello Joi,

I'm sorry to hear that you are struggling with pain

and not sure what's ahead. Do you live anywhere near

a larger town, where you might be able to get a second

opinion??

If you go to www.kneeguru.co.uk/ you can look around

at that site to get more info on knees and procedures

in general.

As far as your orthotics.......new orthotics require

some wearing in time, so if you started by wearing

them all day, you may end up with some knee pain. Of

course, it's always possible that the orthotics are

changing the way you bear your weight on your knees

and it may be making things worse. I'd go back to

where ever you got the orthotics and talk with them.

I'm a firm believer in the whole body concept. If

your knees go into " guard mode " ie you walk

differently to guard the bad spots on your knee, it

can throw your hips, spine, back, and feet off. To

minimize that happening, I'd suggest that you find a

PT who also looks at the entire body and muscular

system, not just the knee and it's muscles. With

strengthening of the hip flexors, abdominal muscle and

back muscles, often times you can " carry " your weight

better over your knees. Nope, it's not a cure all,

nor will it make you feel 100 percent better, but I

believe every little bit we can do to help the knees

is worth it.

Knee replacements are an " end stage " fix. AND it's

elective, meaning that there are orthopedic surgeons

who WILL do them on younger people. But, it's not a

guarentee that everything will be fixed. The problem

with an early TKR (total knee replacement) is that

they are now lasting about 15-20 years (that's up from

10-15) but re- replacing them is difficult and can

basically cripple you. Say it lasts 20 years, you'd

be 64...still too young to be crippled. That said,

you also have to weigh your quality of life. If you

truly have no quality of life then who cares about 20

years from now..... It's a tough decision.

For myself, I know a TKR is in the future (I'm 48)

however, since I can function (just not as much and

active as I'd like) without pain meds for the most

part, I'll wait. Wait until I can't do simple things

anymore, wait until pain meds become a daily

requirement to get out of bed.....and once that

happens, I will demand a TKR no matter what age I am.

There's a lot of information out there, and there are

a lot of possible things that you can try to make the

pain less intense. Do your homework, talk to people,

get information on possible other doctors. Get a

consultation from another doctor (that's less

threatening to all parties than saying " second

opinion " ). Your 26 year history is important, you've

been through the wringer, you're not just " starting

out with knee pain " .....

If PT hasn't worked, maybe find another PT

person......stay as active as possible for it's our

muscles that are our best defense against knee pain.

A lateral release is where the doc severs (releases)

the lateral retinaculum. It releases the overly tight

lateral pull the lateral retinaculum exerts on the

knee cap.

Good luck,

nne

New here

Not sure if my other post came through, so I'll send

another. I was

diagnosed with Chondromalacia about 26 years ago. My

knees have each had

Arthroscopic surgery. My right knee had the patellar

shave and lateral

release. That didn't work, so the Dr did a bone graft

to raise the knee cap

up higher. That worked, but the pain has been coming

back worse and worse as

time goes by. That surgery was done about 23 years

ago. My left knee had a

patella shave and just generally clean up and looked

at. The left knee has

never been as bad as the right until recently. They

both grind and pop all

the time and I have had pain year round now for

several years. They don't

prescribe anything for either the pain or the

condition. I live in a

relatively small town compared to when the right knee

was worked on. I've

pretty much been told I have no cartilage left in my

right knee and very

little in my left knee and I'm " too young " for knee

replacement. That's too

bad because I feel too old at only 44!

Where can I get some info on things they have been

doing for those with

knees as bad as mine? I like the ortho Dr I have now,

but he's very

conservative and doesn't like to do anything other

that PT and that simply

doesn't work anymore. I do have orthotics, and just

got new ones, but my

knees hurt so bad after wearing them! I also can't fit

them in shoes

suitable for work. Any suggestions?

Another question.does the fact that I have

Chondromalacia indicate other

possible problems? The reason I ask is I've had hip

bursitis for about two

years now and can't get rid of it. The orthotics are

supposed to help

re-align my knees so is the fact that my knees are so

out of whack a

potential reason for other joint problems?

Last question.when they do a lateral release, what

exactly are they

releasing? I can't remember! It's been tooooo long!

Joi

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I do know of a girl just west of us who had a TTT and partial knee replacement

when she was in her forties. She seems to be doing well.

I am also looking at other possible explanations for knee pain. I have had

knee pain in both knees for about 6 years now with four arthroscopic surgeries.

I also have what was diagnosed as hip and shoulder bursitis this summer and had

cortisone shots in both, and also a shot of cortisone in my shoulder last

summer. About 10 days ago both ankles became very painful. My doctor did some

bloodwork. My bloodwork came back negative for rheumatoid arthritis, but

positive for possibly another auto-immune disease. My doctor put me on

methylprednisone. I have also been taking Celebrex for some time. He also set

me up with a Rheumatologist who I see next Thursday. My blood pressure always

goes high when I am in a lot of pain, and it was high on Tuesday when I went on

the prednisone. This morning I was feeling very peculiar. I went back to the

clinic, and my bloodpressure was very high, along with a suspicious EKG and

positive blood marker for a heart attack. My doctor rushed me to the regional

medical center in an ambulance where they gave me a nitrogicerine patch. I

started to feel much better right away, and further tests ruled out a heart

attack. My EKG, blood test for heart attack, and blood pressure returned to

normal and I was released. I think it was the combination of Celebrex and

methylprednisone. I don't blame my doctor because I told him how much better I

felt in the past with methylprednisone, although even then I had some strange

side effects at that time.

I was doing some reading on rheumatoid arthritis and it said about 20% of people

with RA actually have a negative blood test for RA. I will let you know if I

find out something on Thursday.

I was fitted for a $500 custom orthotic about 17 years ago after breaking my

foot. They were also very uncomfortable, and I ended up setting them aside. I

have been wearing just Spenco orthotics just off the shelf for around $20 and

would recommend them;

http://www.spenco.com/prod_footcare_greenortho.html

Mike

MT

New here

Not sure if my other post came through, so I'll send another. I was

diagnosed with Chondromalacia about 26 years ago. My knees have each had

Arthroscopic surgery. My right knee had the patellar shave and lateral

release. That didn't work, so the Dr did a bone graft to raise the knee cap

up higher. That worked, but the pain has been coming back worse and worse as

time goes by. That surgery was done about 23 years ago. My left knee had a

patella shave and just generally clean up and looked at. The left knee has

never been as bad as the right until recently. They both grind and pop all

the time and I have had pain year round now for several years. They don't

prescribe anything for either the pain or the condition. I live in a

relatively small town compared to when the right knee was worked on. I've

pretty much been told I have no cartilage left in my right knee and very

little in my left knee and I'm " too young " for knee replacement. That's too

bad because I feel too old at only 44!

Where can I get some info on things they have been doing for those with

knees as bad as mine? I like the ortho Dr I have now, but he's very

conservative and doesn't like to do anything other that PT and that simply

doesn't work anymore. I do have orthotics, and just got new ones, but my

knees hurt so bad after wearing them! I also can't fit them in shoes

suitable for work. Any suggestions?

Another question.does the fact that I have Chondromalacia indicate other

possible problems? The reason I ask is I've had hip bursitis for about two

years now and can't get rid of it. The orthotics are supposed to help

re-align my knees so is the fact that my knees are so out of whack a

potential reason for other joint problems?

Last question.when they do a lateral release, what exactly are they

releasing? I can't remember! It's been tooooo long!

Joi

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Geez Mike, what a scare! Glad you're doing ok! I

hope your doctor(s) will help you figure out what's

going on. Did you stop the pred. or the celebrex, or

both??

One thing I've noticed about myself, and no, I'm not

going into some weird-ass, " eat the eyes of newts "

type of thing, but when I eat poorly, my joints seem

to ache more and I seem to get weird pains in all

sorts of body places. I've been reading some about

diet and joint pain stuff and there seems to be some

correlation between a lot of junk/preserved foods and

joint pain. I can attest to it, because when I

indulge in the things I truly like (like ice cream,

cookies, sodas, chips, etc etc) I do seem to be more

achy. Often times it's said that some food allergy

can trigger joint pain as well. Of course, once you

start reading about diets/health you'll find that

everything seems to affect joint pain! But, from my

perspective, if I stay away from copious quantities of

" crappy " food and drink a lot of water, things seem to

be a bit easier joint wise. Maybe it's just drinking

lots of water and not soda that helps, who knows?

Take it easy and let use know how it goes with the

rheumatologist next thursday....

marianne

Re: New here

I do know of a girl just west of us who had a TTT and

partial knee replacement when she was in her forties.

She seems to be doing well.

I am also looking at other possible explanations for

knee pain. I have had knee pain in both knees for

about 6 years now with four arthroscopic surgeries. I

also have what was diagnosed as hip and shoulder

bursitis this summer and had cortisone shots in both,

and also a shot of cortisone in my shoulder last

summer. About 10 days ago both ankles became very

painful. My doctor did some bloodwork. My bloodwork

came back negative for rheumatoid arthritis, but

positive for possibly another auto-immune disease. My

doctor put me on methylprednisone. I have also been

taking Celebrex for some time. He also set me up with

a Rheumatologist who I see next Thursday. My blood

pressure always goes high when I am in a lot of pain,

and it was high on Tuesday when I went on the

prednisone. This morning I was feeling very peculiar.

I went back to the clinic, and my bloodpressure was

very high, along with a suspicious EKG and positive

blood marker for a heart attack. My doctor rushed me

to the regional medical center in an ambulance where

they gave me a nitrogicerine patch. I started to feel

much better right away, and further tests ruled out a

heart attack. My EKG, blood test for heart attack,

and blood pressure returned to normal and I was

released. I think it was the combination of Celebrex

and methylprednisone. I don't blame my doctor because

I told him how much better I felt in the past with

methylprednisone, although even then I had some

strange side effects at that time.

I was doing some reading on rheumatoid arthritis and

it said about 20% of people with RA actually have a

negative blood test for RA. I will let you know if I

find out something on Thursday.

I was fitted for a $500 custom orthotic about 17 years

ago after breaking my foot. They were also very

uncomfortable, and I ended up setting them aside. I

have been wearing just Spenco orthotics just off the

shelf for around $20 and would recommend them;

http://www.spenco.com/prod_footcare_greenortho.html

Mike

MT

New here

Not sure if my other post came through, so I'll send

another. I was

diagnosed with Chondromalacia about 26 years ago. My

knees have each had

Arthroscopic surgery. My right knee had the patellar

shave and lateral

release. That didn't work, so the Dr did a bone

graft to raise the knee cap

up higher. That worked, but the pain has been coming

back worse and worse as

time goes by. That surgery was done about 23 years

ago. My left knee had a

patella shave and just generally clean up and looked

at. The left knee has

never been as bad as the right until recently. They

both grind and pop all

the time and I have had pain year round now for

several years. They don't

prescribe anything for either the pain or the

condition. I live in a

relatively small town compared to when the right

knee was worked on. I've

pretty much been told I have no cartilage left in my

right knee and very

little in my left knee and I'm " too young " for knee

replacement. That's too

bad because I feel too old at only 44!

Where can I get some info on things they have been

doing for those with

knees as bad as mine? I like the ortho Dr I have

now, but he's very

conservative and doesn't like to do anything other

that PT and that simply

doesn't work anymore. I do have orthotics, and just

got new ones, but my

knees hurt so bad after wearing them! I also can't

fit them in shoes

suitable for work. Any suggestions?

Another question.does the fact that I have

Chondromalacia indicate other

possible problems? The reason I ask is I've had hip

bursitis for about two

years now and can't get rid of it. The orthotics are

supposed to help

re-align my knees so is the fact that my knees are

so out of whack a

potential reason for other joint problems?

Last question.when they do a lateral release, what

exactly are they

releasing? I can't remember! It's been tooooo long!

Joi

[Non-text portions of this message have been

removed]

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What's a TTT?

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of Mike Bernhardt

Sent: Friday, September 08, 2006 9:00 PM

chondromalacia treatment

Subject: Re: New here

I do know of a girl just west of us who had a TTT and partial knee

replacement when she was in her forties. She seems to be doing well.

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Tibial Tuberosity Transfer

Overall name for different procedures to realign the

patella by " changing " the tibial tuberosity (the

little knobby thing where your patella tendon

attaches, about 1-2 inches below your knee) Names

such as a Fulkerson Procedure, or Maquet Osteotomy

are all TTT's. Can be very tricky, can be very

successful..........like any other knee surgical

procedure.

nne

Re: New here

I do know of a girl just west of us who had a TTT and

partial knee

replacement when she was in her forties. She seems to

be doing well.

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  • 2 weeks later...

Welcome!

Yes those are squat thrusts or burpees...take care with them. shows you how to modify them. I hadn't done those in forever before I got the Bootcamps so I took it easy. You can quickly hurt yourself and you don't want to do that! You can skip them altogether and do regular squats or something else. Rest your back.

On 9/30/06, bkbb64 <tincup1@...> wrote:

Hello,I just got Blanks series of " Missions " on Monday and did the first DVD. It was a lot of fun, though some of the moves I couldn't do. I actually pulled my back trying to do the move where you drop to your hands and throw you legs back. I've been letting my back rest and will start again today.I realized that I should not be trying to use the weights to begin with; I need to work my way up to that. I'll bet there are a lot of people who try to do too much the first time and never do go back to it. I'm tempted, but I really want to give it another try. I really was fun.I am already active; I work out a my local Y Monday-Friday. I'm adding the Tae Bo for variety. I like the fact that 's moves are done from pretty much a stationary position. My 42 year old, post pergnancy bladder can't take jumping around moves.Any tips or advice for new tae boer?

Thanks,KarlaB -- Be a F.R.O.G . °Ü°

GLYSDI,Gymmie in TexasFREE THE DOG, LELAND AND YOUNGBLOOD!www.freedogthebountyhunter.comhttp://www.myspace.com/nascartaebogymmie

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Hi, welcome to the group! My ocd son is 17. It all began for us back

in 6th grade, around age 11.5.

When it comes to school issues, you can get LOTS of thoughts and

experience here. We had to set up a 504 Plan (similar to an IEP, had

accommodations & modifications for school) for him to use through

middle school. I think the key is to explain to them just how their

illnesses are affecting their education, the learning, doing their

work, affecting grades, having to put in extra time/effort....

Well, things to finish up before bed but wanted to say " hi! "

>

> Hello,

>

> I'm very new here. Just discovered this board, and am looking forward

> to the Sunday night chat. If anyone has any good book

recommendations,

> it would be appreciated. My son really likes the " Mr. Worry " (I think

> that's what it's called) book.

> My 10 yr old son has Generalized Anxiety Disorder, as well as ocd

> (mostly obsessive thoughts), and a lot of sensory issues.

>

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  • 3 weeks later...

Are you sure you wouldn't be willing to try the casting? It's been proven to be

much more effective in correcting the curve than a brace. A plaster cast holds

the curve and fits a young child better than most braces. My son Ian is in his

sixth cast (we go every 8 weeks) and went from 43 degrees to his current

measurement of 11 degrees. He will be going into a brace once they have

straightened him out for a year. I know it is a hassle, but well worth it when

you see the end results. Anyway, whatever you decide to do, I wish you luck and

hope Abby's scoliosis improves!

There are several other parents here who have experience with Boston Children's

Hospital, and I am sure they will be happy to share their experiences with you.

Noelle (12-2-01)

Ian (8-15-04)

New Here

Hi everyone! My name is and my 20 month old little girl,

Abigail (Abby) was diagnosed about 2 months ago with Scoliosis. She

had x-rays taken at that time and her curve was measured at 44

degrees. She had an MRI 2 weeks ago and the doctor said that

everything else is fine, just her scoliosis. We had a visit last week

with Dr. Hresko out of Children's Hospital in Boston, MA and he

suggested the serial casts and explained that about every 6 weeks she

would have a new one and have to be put under anesthesia for the

procedure. After watching what she went through just for the MRI the

week before, I couldn't picture going through that again with her

every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace on

November 3. From what he has told me it's a prototype brace using a

Boston Brace that they're working on that will be able to be adjusted

as her curve hopefully improves. I'm so new to all of this and any

information that any of you have would be so helpful! Some articles

I've been reading say that braces don't correct...then I read of some

that do. It's all very confusing right now. Also, I guess I have the

common questions too about how to diaper wearing the brace, will she

be comfortable in her carseat or highchair? The Dr. said she should

be in it at all times except for baths for right now. Any information

you can share with me would be appreciated! I look forward to getting

to know you all!

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HI and welcome to the group....am glad you found us!! Out of

curiosity, what are Abby's curve numbers? Did they tell you?

I can tell you from our experience with our daughter, Lexi who is currently

in a brace. As far as diapering goes, I always took her brace off to change

diapers and put the diaper under the brace. It was easier this way as it kept

the diaper on better....putting it over always caused the diaper to fall off and

slide down the brace. Lexi is now potty trained, so diapering is behind us thank

goodness!!

Lexi was in her highchair for awhile in the brace and she never seemed to be

uncomfortable in it. We always loosen the brace a little at mealtimes to allow

for her tummy expanding while she gets full, then awhile later we tighten the

straps back again.

I can tell you from our experience on bracing that Lexi has obtained correction

in her curve. She did go through 2 serial plaster casts last year and also

obtained great correction. When she went into the brace in January of 2006 her

curve was at 37 degrees...today she is at 5 degrees and no rotation. There is an

article/interview I did on our bracing experience on the ISOP main page under

information link and then bracing. If you want to talk more or have more

questions, let me know. You can email me privately at pthahn@... and

maybe we can exchange phone numbers and talk as well. Let me know and welcome

again!!!

Tracey & Lexi

New Here

Hi everyone! My name is and my 20 month old little girl,

Abigail (Abby) was diagnosed about 2 months ago with Scoliosis. She

had x-rays taken at that time and her curve was measured at 44

degrees. She had an MRI 2 weeks ago and the doctor said that

everything else is fine, just her scoliosis. We had a visit last week

with Dr. Hresko out of Children's Hospital in Boston, MA and he

suggested the serial casts and explained that about every 6 weeks she

would have a new one and have to be put under anesthesia for the

procedure. After watching what she went through just for the MRI the

week before, I couldn't picture going through that again with her

every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace on

November 3. From what he has told me it's a prototype brace using a

Boston Brace that they're working on that will be able to be adjusted

as her curve hopefully improves. I'm so new to all of this and any

information that any of you have would be so helpful! Some articles

I've been reading say that braces don't correct...then I read of some

that do. It's all very confusing right now. Also, I guess I have the

common questions too about how to diaper wearing the brace, will she

be comfortable in her carseat or highchair? The Dr. said she should

be in it at all times except for baths for right now. Any information

you can share with me would be appreciated! I look forward to getting

to know you all!

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Hi -

My son Evan was diagnosed at 4months old with a 46 degree curve and was placed

in a cast at 5 months old. He is now in his fifth cast and has achieved

wonderful correction. He is currently at 16 degrees out of his cast and around

13 in it. His rotation has greatly improved as well.

Please do all your research and get opinions. You know what is best for your

daughter, but please look into casting as a way to help train the spine to grow

straight. My son Evan never had any problems in the carseat or highchair, and I

worried that he would. He has learned to crawl and walk in his cast and has

adapted and adjusted very well.

Good luck and welcome.

and Evan

llkylaa <Lkyla@...> wrote:

Hi everyone! My name is and my 20 month old little girl,

Abigail (Abby) was diagnosed about 2 months ago with Scoliosis. She

had x-rays taken at that time and her curve was measured at 44

degrees. She had an MRI 2 weeks ago and the doctor said that

everything else is fine, just her scoliosis. We had a visit last week

with Dr. Hresko out of Children's Hospital in Boston, MA and he

suggested the serial casts and explained that about every 6 weeks she

would have a new one and have to be put under anesthesia for the

procedure. After watching what she went through just for the MRI the

week before, I couldn't picture going through that again with her

every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace on

November 3. From what he has told me it's a prototype brace using a

Boston Brace that they're working on that will be able to be adjusted

as her curve hopefully improves. I'm so new to all of this and any

information that any of you have would be so helpful! Some articles

I've been reading say that braces don't correct...then I read of some

that do. It's all very confusing right now. Also, I guess I have the

common questions too about how to diaper wearing the brace, will she

be comfortable in her carseat or highchair? The Dr. said she should

be in it at all times except for baths for right now. Any information

you can share with me would be appreciated! I look forward to getting

to know you all!

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

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,

Welcome to the group, there are so many great parents on this site.

My daughter just truned 3 and her curve is 86 degrees. She has been

in braces since she was nine months old. I thought the brace was the

best way to go for Lacie and I didn't push for casting. I mentioned

it one time and left it at that. The brace will not fix her curve it

works as a " splint " taking the pressure of her curve off her organs.

Now that her curve has progressed so much I wish I had pushed for

casting. I thought Lacie would have a " better quality of life " in

the brace deep down. I thought 23 hrs a day would be enough and she

would still be able to bathe. She loves her bathes so much and we

have a pool and it wouldn't be fair for her siblings to swim and her

not. I truly thought we had done what was best. But now in all

honesty I wish I would of listened to the other moms on this sight

that stressed the importance of casting and casting her ASAP.

I swear I don't say any of this to scare you. My children are my

world (as I'm sure everyone else's are too). I have researced like

crazy, I have kept a in depth log of her medical redords, I have

done everything I thought I was supposed too. I always said I don't

want to have any regrets I want to know we did our best for her. And

I do for the most part all except the casting. And I just don't want

another mom to feel that way. Now that the doctor is interrested in

casting, I'm afraid it may be too late. I want to give it a try but

I wish we had done it two years ago.

I know every curve and every child is different but for the most

part the brace will not " fix " infanitile scoliosis. Our sweet babies

don't tend to grow straight like other children and with

each " growth spurt " there is a risk of progression. And this is a

time of rapid growth for our little ones. I hope this helps.

We go back to Shriners in December and I plan to push for casting.

>

> Hi everyone! My name is and my 20 month old little girl,

> Abigail (Abby) was diagnosed about 2 months ago with Scoliosis.

She

> had x-rays taken at that time and her curve was measured at 44

> degrees. She had an MRI 2 weeks ago and the doctor said that

> everything else is fine, just her scoliosis. We had a visit last

week

> with Dr. Hresko out of Children's Hospital in Boston, MA and he

> suggested the serial casts and explained that about every 6 weeks

she

> would have a new one and have to be put under anesthesia for the

> procedure. After watching what she went through just for the MRI

the

> week before, I couldn't picture going through that again with her

> every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace

on

> November 3. From what he has told me it's a prototype brace using

a

> Boston Brace that they're working on that will be able to be

adjusted

> as her curve hopefully improves. I'm so new to all of this and any

> information that any of you have would be so helpful! Some

articles

> I've been reading say that braces don't correct...then I read of

some

> that do. It's all very confusing right now. Also, I guess I have

the

> common questions too about how to diaper wearing the brace, will

she

> be comfortable in her carseat or highchair? The Dr. said she

should

> be in it at all times except for baths for right now. Any

information

> you can share with me would be appreciated! I look forward to

getting

> to know you all!

>

>

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,

Hey sweetie, I meant to say if you do brace I can suggest that you

ask them to put a small hole in the front were her tummy is to allow

a little expanding after eating. It helped Lacie so much, she had a

hard time until they put the whole in her second brace! And make

sure they flare the bottom just a bit so it is more comfortable to

sit. Lacie's first brace bruised the tops of her thighs, they flared

the second one and she did much better. It helps with the car seat,

high chair, ect...

Diapering I did have her diaper under the brace and had to remove it

each time, luckily Abby is almost two so hopefully she'll potty

train pretty and you won't have to worry about that for too long.

Good luck in which ever step you choose! I wish you the best!

>

> Hi everyone! My name is and my 20 month old little girl,

> Abigail (Abby) was diagnosed about 2 months ago with Scoliosis.

She

> had x-rays taken at that time and her curve was measured at 44

> degrees. She had an MRI 2 weeks ago and the doctor said that

> everything else is fine, just her scoliosis. We had a visit last

week

> with Dr. Hresko out of Children's Hospital in Boston, MA and he

> suggested the serial casts and explained that about every 6 weeks

she

> would have a new one and have to be put under anesthesia for the

> procedure. After watching what she went through just for the MRI

the

> week before, I couldn't picture going through that again with her

> every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace

on

> November 3. From what he has told me it's a prototype brace using

a

> Boston Brace that they're working on that will be able to be

adjusted

> as her curve hopefully improves. I'm so new to all of this and any

> information that any of you have would be so helpful! Some

articles

> I've been reading say that braces don't correct...then I read of

some

> that do. It's all very confusing right now. Also, I guess I have

the

> common questions too about how to diaper wearing the brace, will

she

> be comfortable in her carseat or highchair? The Dr. said she

should

> be in it at all times except for baths for right now. Any

information

> you can share with me would be appreciated! I look forward to

getting

> to know you all!

>

>

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I just want to thank all of you who have responded to my posting so far.

The response to me has been amazing! It's so nice to know there are so many

out there that care, but better yet, actually understand because they have gone

through it. I felt so alone in this when Abby was first diagnosised and all

I could find for information was strictly on Juvenile Scoliosos which didn't

help very much. Had I found this site earlier I may have made a different

decision about the casting method. When the Doctor recomended it, it sounded

so horrible to me and I couldn't imagine putting my baby through that. But

now I'm starting to wonder what could happen to her if I don't. I'm starting

to rethink the idea of casting. Abby is supposed to receive her brace a week

from this Friday so I guess I'll wait and see how that goes. Her Dr. said

if we are going to see results, we should see them in 6 weeks. So Abby has an

appointment for an x-ray then. If there is no improvement or if godforbid

her curve has worsened, then I now know I will feel much better about going

with the casting. I guess we're actually quite lucky that Children's here in

Boston offers it...espeically since I live only 10 minutes North of Boston.

Thank you all again so much for your help and information. I look forward to

continuing to learn more from you all!

& Abby

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Hello ,

I just wanted to chime in that my daughter did just HORRID with the MRI

anesthesia, but did much better with the type they used for her casts--her nurse

said that is typical because they use a different type on MRI's. Just thought I

would let you know as something to consider and/or ask about.

________________________________

From: infantile scoliosis treatment on behalf of amberdslape

Sent: Tue 10/24/2006 2:52 PM

infantile scoliosis treatment

Subject: Re: New Here

,

Hey sweetie, I meant to say if you do brace I can suggest that you

ask them to put a small hole in the front were her tummy is to allow

a little expanding after eating. It helped Lacie so much, she had a

hard time until they put the whole in her second brace! And make

sure they flare the bottom just a bit so it is more comfortable to

sit. Lacie's first brace bruised the tops of her thighs, they flared

the second one and she did much better. It helps with the car seat,

high chair, ect...

Diapering I did have her diaper under the brace and had to remove it

each time, luckily Abby is almost two so hopefully she'll potty

train pretty and you won't have to worry about that for too long.

Good luck in which ever step you choose! I wish you the best!

>

> Hi everyone! My name is and my 20 month old little girl,

> Abigail (Abby) was diagnosed about 2 months ago with Scoliosis.

She

> had x-rays taken at that time and her curve was measured at 44

> degrees. She had an MRI 2 weeks ago and the doctor said that

> everything else is fine, just her scoliosis. We had a visit last

week

> with Dr. Hresko out of Children's Hospital in Boston, MA and he

> suggested the serial casts and explained that about every 6 weeks

she

> would have a new one and have to be put under anesthesia for the

> procedure. After watching what she went through just for the MRI

the

> week before, I couldn't picture going through that again with her

> every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace

on

> November 3. From what he has told me it's a prototype brace using

a

> Boston Brace that they're working on that will be able to be

adjusted

> as her curve hopefully improves. I'm so new to all of this and any

> information that any of you have would be so helpful! Some

articles

> I've been reading say that braces don't correct...then I read of

some

> that do. It's all very confusing right now. Also, I guess I have

the

> common questions too about how to diaper wearing the brace, will

she

> be comfortable in her carseat or highchair? The Dr. said she

should

> be in it at all times except for baths for right now. Any

information

> you can share with me would be appreciated! I look forward to

getting

> to know you all!

>

>

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I thought I would chime in a second time and say that I REALLY was dreading the

cast--our doctor insisted on putting one on 2 days after we moved into a new (to

us) home that had a swimming pool (so we could help strenghten her back) and no

air conditioning (a trade off for the pool). She adapted much more quickly than

we did (it only took her 15 hours us a few weeks :) We survived and are so glad

we did the cast. Her curve went from 35 out of cast to 12 out of cast after

only 12 weeks of casting--our doctor changed it every 30 days.

________________________________

From: infantile scoliosis treatment on behalf of Tracey

Sent: Tue 10/24/2006 1:48 PM

infantile scoliosis treatment

Subject: Re: New Here

HI and welcome to the group....am glad you found us!! Out of curiosity,

what are Abby's curve numbers? Did they tell you?

I can tell you from our experience with our daughter, Lexi who is currently in a

brace. As far as diapering goes, I always took her brace off to change diapers

and put the diaper under the brace. It was easier this way as it kept the diaper

on better....putting it over always caused the diaper to fall off and slide down

the brace. Lexi is now potty trained, so diapering is behind us thank goodness!!

Lexi was in her highchair for awhile in the brace and she never seemed to be

uncomfortable in it. We always loosen the brace a little at mealtimes to allow

for her tummy expanding while she gets full, then awhile later we tighten the

straps back again.

I can tell you from our experience on bracing that Lexi has obtained correction

in her curve. She did go through 2 serial plaster casts last year and also

obtained great correction. When she went into the brace in January of 2006 her

curve was at 37 degrees...today she is at 5 degrees and no rotation. There is an

article/interview I did on our bracing experience on the ISOP main page under

information link and then bracing. If you want to talk more or have more

questions, let me know. You can email me privately at pthahn@...

<mailto:pthahn%40sbcglobal.net> and maybe we can exchange phone numbers and

talk as well. Let me know and welcome again!!!

Tracey & Lexi

New Here

Hi everyone! My name is and my 20 month old little girl,

Abigail (Abby) was diagnosed about 2 months ago with Scoliosis. She

had x-rays taken at that time and her curve was measured at 44

degrees. She had an MRI 2 weeks ago and the doctor said that

everything else is fine, just her scoliosis. We had a visit last week

with Dr. Hresko out of Children's Hospital in Boston, MA and he

suggested the serial casts and explained that about every 6 weeks she

would have a new one and have to be put under anesthesia for the

procedure. After watching what she went through just for the MRI the

week before, I couldn't picture going through that again with her

every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace on

November 3. From what he has told me it's a prototype brace using a

Boston Brace that they're working on that will be able to be adjusted

as her curve hopefully improves. I'm so new to all of this and any

information that any of you have would be so helpful! Some articles

I've been reading say that braces don't correct...then I read of some

that do. It's all very confusing right now. Also, I guess I have the

common questions too about how to diaper wearing the brace, will she

be comfortable in her carseat or highchair? The Dr. said she should

be in it at all times except for baths for right now. Any information

you can share with me would be appreciated! I look forward to getting

to know you all!

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Hi and welcome to the group.

You will learn SO much here.

My son, , is 18 months old and in his 2nd cast.

I know all too well what you are thinking about casting and the experience.

I was terrified when his doctor told us about casting.

After 's MRI I felt the same way you do right now, BUT I am so happy we

moved forward with the cast. He has adjusted better than I ever imagined. I

think it is harder for the parents than what the kids go through.

I had so many doubts about casting . Later realizing they were all about my

feelings. You would never know has a cast on his little body. He just

amazing me as I am sure all the mothers here can testify for their children as

well.

The highchair and carseat never were a problem for him. I thought sleeping

would be awful, but he continued to sleep through the night just days after his

1st cast. And on his tummy. Of course the first time is the hardest, but they

DO adjust and beautifully I might add.

has gone from 35 to 21 degrees out of cast and 15 to 10 in the cast.

Like others have said, I would research casting and seriously consider this

for Abby.

I would definitely think twice about it.

No matter what you decide I pray Abby gets treatment to help her very soon.

Tasha/

llkylaa <Lkyla@...> wrote:

Hi everyone! My name is and my 20 month old little girl,

Abigail (Abby) was diagnosed about 2 months ago with Scoliosis. She

had x-rays taken at that time and her curve was measured at 44

degrees. She had an MRI 2 weeks ago and the doctor said that

everything else is fine, just her scoliosis. We had a visit last week

with Dr. Hresko out of Children's Hospital in Boston, MA and he

suggested the serial casts and explained that about every 6 weeks she

would have a new one and have to be put under anesthesia for the

procedure. After watching what she went through just for the MRI the

week before, I couldn't picture going through that again with her

every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace on

November 3. From what he has told me it's a prototype brace using a

Boston Brace that they're working on that will be able to be adjusted

as her curve hopefully improves. I'm so new to all of this and any

information that any of you have would be so helpful! Some articles

I've been reading say that braces don't correct...then I read of some

that do. It's all very confusing right now. Also, I guess I have the

common questions too about how to diaper wearing the brace, will she

be comfortable in her carseat or highchair? The Dr. said she should

be in it at all times except for baths for right now. Any information

you can share with me would be appreciated! I look forward to getting

to know you all!

__________________________________________________

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Hi everyone,

You all seem so shocked that Children's is offering the casting method and

from what I can gather, I guess they hadn't been in the past. When I was at

Abby's appointment last week with Dr. Hresko to discuss Abby's MRI (which

thank god, turned out to be fine), he then suggested using a " cast " to fix her

curve that would be replaced every 6 weeks or so and that as her curve improved

that the degree of the cast would be altered as a new one was applied and of

course, he told us that Abby would have to have anesthesia for this

procedure. Now I am very new to all of this so I don't want to mislead any of

you.

That's exactly what he had said and from the research I have done, it seems

to be the same casting technique??? I haven't read of any other's out there.

He said that for years, Children's had been a strictly bracing institution

and that just recently they had reconsidered the idea of casting. Also I

guess from what he said that the Boston Brace that Abby is going into is not a

typical Boston Brace. How it is going to be different, at this point, I can't

tell you because I'm not familiar with a Boston Brace to begin with. :) Dr.

Hresko said that this type of brace has only been used a handful of times at

Children's and that it has proven successful but that it takes dillegence on

the parent's part. NOPCO which is the company actually making the brace

assured us (altough I know, no one can really assure you anything about your

child when it comes to scoliosis) that this brace will straighten her back.

I'm

still very confused with the pro's and con's of each method and I know we

don't have much time to keep contemplating different options where Abby is

growing so rapidly. So I guess we're going to wait and see what this brace is

actually like next Friday and just pray. I guess that's all we can do at this

point. Dr. Hreskp wants to see her 6 weeks later and at that time, if her

curve has gotten worse, we will reconsider the casting method. I hope this

helped clear up any confusion. From the sounds of it, like I have said, it

sounds like the casting method you are all talking about...I hope so!!!

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hi natalie (and abby!),

i'm sorry i haven't responded sooner. i also live north of boston -- woburn.

my son lucas (almost 5 yrs old) was diagnosed with infantile scoliosis at 18 mos

(2003) -- at that time he was 68o/45o. we went to children's in boston and saw

dr. hedequist. he had an mri and was found to have a tight/fatty filum. he did

go into a tlso during naps and nighttime initially. we also went for a second

and third opinion. after the spinal detethering at 22 months, we insisted as

per our third opinion for more aggressive bracing. it was then lucas was put

into the tlso during the day and a charleston bending brace at night.

initially, his curves came down, but then they crept back up again especially

after his first tlso needed replacing since he outgrew it. the first tlso was

moulded to his body with plaster (but he was not sedated or anaesthetized). his

second one was made entirely from tape measurements. lucas never felt

comfortable in this brace. my husband and i had decide!

d to wait to try and give bracing a try -- especially since there really wasn't

another option like casting available at the time. plus, children's refused to

even listen to ideas about casting. finally at 2 1/2 yrs old, we decided to get

lucas casted at the shriners hospital in erie, pa with dr. sanders. for 2 yrs

(2 1/2 to 4 1/2), we went to erie for cast changes every 3-4 months. as of july

2006, lucas is in a spinecor brace that we go to montreal for. we decided that

he had been in something rigid (tlso/charleston and then casts) for a long, long

time. we had major concerns about his trunk muscles so we hope the spinecor

will give him the support that he needs to maintain a corrected spine (now

18o/14o in brace) as well as strengthening all of his stomach and back muscles.

okay, long history, but i wanted you to know where i was coming from.

unfortunately, there are a lot of families in the boston area that have started

out at children's, but then decided to give casting a try -- either travelling

to erie, pa or salt lake city, utah. i know that dr. sanders has been trying to

get children's on board with casting. i do believe (but i could be wrong!) that

dr. hresko actually went to erie (or maybe even philly) to learn about the mehta

casting technique. if they are doing casting at children's, it is a major,

major step in the right direction. what a change!!!!! i know that they had

been referring patients to erie or slc, but refusing to cast themselves. wow!

if you don't mind, i would love to talk to you on the phone. i will e-mail you

my phone # off-board as well as lucas' photo website showing all of the braces,

casts and x-rays over the years.

long e-mail and i hope i didn't inundate you!

deshea

mom to lucas & ruby (2 yrs old)

---- Original message ----

>Date: Tue, 24 Oct 2006 21:28:45 EDT

>From: Lkyla@...

>Subject: Re: New Here

>infantile scoliosis treatment

>

> I just want to thank all of you who have responded

> to my posting so far.

> The response to me has been amazing! It's so nice to

> know there are so many

> out there that care, but better yet, actually

> understand because they have gone

> through it. I felt so alone in this when Abby was

> first diagnosised and all

> I could find for information was strictly on

> Juvenile Scoliosos which didn't

> help very much. Had I found this site earlier I may

> have made a different

> decision about the casting method. When the Doctor

> recomended it, it sounded

> so horrible to me and I couldn't imagine putting my

> baby through that. But

> now I'm starting to wonder what could happen to her

> if I don't. I'm starting

> to rethink the idea of casting. Abby is supposed to

> receive her brace a week

> from this Friday so I guess I'll wait and see how

> that goes. Her Dr. said

> if we are going to see results, we should see them

> in 6 weeks. So Abby has an

> appointment for an x-ray then. If there is no

> improvement or if godforbid

> her curve has worsened, then I now know I will feel

> much better about going

> with the casting. I guess we're actually quite lucky

> that Children's here in

> Boston offers it...espeically since I live only 10

> minutes North of Boston.

> Thank you all again so much for your help and

> information. I look forward to

> continuing to learn more from you all!

> & Abby

>

> [Non-text portions of this message have been

> removed]

>

>

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Hi ,

My name is Amy and I have Three girls~ Isabella-6 and twins Amelia &

Adelaide-2. Adelaide(Addy), was diagnosed with infantile scoliosis at 9months.

We began seeing Dr. Hresko at Children's Hospital in Boston too. She was placed

in the Boston brace at 11months and her curve progressed from 42 to 60 in about

six months.They then placed her in the ton (night bending brace). She

would wear the " Boston " all day and the " ton " all night.. Unfortunately,

bracing did not work for Addy and her curve progressed to the 70's. We then

found out about " casting " and opted to try that route -as to avoid surgery. Addy

is in her 5th cast and is casted every eight weeks at Shriner's Hospital in

Erie, PA. with Dr. . We still keep in contact with Dr. Hresko and he has

been wonderful checking on Addy's casting progress.My only regret is, that I

wish we had learned about casting earlier -as we would not have wasted a year

trying to brace her. The only thing we gained from

bracing was that her scoliosis progressed about 30 degrees. I know that this

all very overwhelming and I wish you all the best with Abby. Where in

Massachusetts do you live? We are on Cape Cod.

~Amy & Addy

llkylaa <Lkyla@...> wrote:

Hi everyone! My name is and my 20 month old little girl,

Abigail (Abby) was diagnosed about 2 months ago with Scoliosis. She

had x-rays taken at that time and her curve was measured at 44

degrees. She had an MRI 2 weeks ago and the doctor said that

everything else is fine, just her scoliosis. We had a visit last week

with Dr. Hresko out of Children's Hospital in Boston, MA and he

suggested the serial casts and explained that about every 6 weeks she

would have a new one and have to be put under anesthesia for the

procedure. After watching what she went through just for the MRI the

week before, I couldn't picture going through that again with her

every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace on

November 3. From what he has told me it's a prototype brace using a

Boston Brace that they're working on that will be able to be adjusted

as her curve hopefully improves. I'm so new to all of this and any

information that any of you have would be so helpful! Some articles

I've been reading say that braces don't correct...then I read of some

that do. It's all very confusing right now. Also, I guess I have the

common questions too about how to diaper wearing the brace, will she

be comfortable in her carseat or highchair? The Dr. said she should

be in it at all times except for baths for right now. Any information

you can share with me would be appreciated! I look forward to getting

to know you all!

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

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Hi Deshea,

Yes, I have read the article in the FILES link. It was very helpful. He

had said every 6 weeks or so. So I don't know if it would be every 6 weeks

exactly or if he was just giving an average. He did say that the cast would go

under her armpits and just above her hips in the front and somewhat down her

little tush in the rear. As far as the holes, I'm not really sure. When we

started to ask about the brace, he stopped talking about the casting method.

So I'm really not 100% sure. He did say it was a new method that they were

using at Children's that had seen fantastic results. Sorry I don't know more

but at the time I really didn't know the questions to ask. I look forward

to talking with you later.

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,

Congrats on finding this support group and welcome! We, too, live in Mass.

My son Jake was diagnosed with infantile scoli at 3 1/2 months old with 2 small

curves measuring 20 and 19 degrees. We were told to wait and see, and that's

what we did for almost a year before going to Children's for a Boston brace.

After that, we found ISOP and learned of casting. We traveled to Erie Shriners

to have Jake evaluated for a cast. They took an x-ray and found his

curve/curves improved 5 degrees, but our doc was confident he could get the

numbers down more quickly than a brace and could control the rotation - where

the brace was not. We decided to cast Jake then at the age of 15 months. His

top curve had corrected by then, and his 2nd curve measured 28 degrees before

his 1st cast. After 3 casts (changed every 2 months), he went into a brace and

is currently support free. His spine (at this time) is straight. He is now 2

years old. We all know the agony you are going

through and how scary this all sounds when you are first learning. The fact

that Children's is offering (or did I misunderstand that part?) or even

discussing casting is amazing. When we were there over a year ago, our doc

laughed us out the door. Every child is different and responds to treatment

differently, but most of us here have had excellent results with serial casting.

I do not regret the decision we made. Good luck with your decisions and ask as

many questions (here on this group and in your doctor's office) as you need.

Also take a look at some of the articles in the FILES section of this group

especially Mehta's " Growth as a corrective force in the early treatment of

progressive infantile scoliosis " . If you'd ever like to talk, I can send you my

phone number privately.

Again welcome,

& Jake

llkylaa <Lkyla@...> wrote:

Hi everyone! My name is and my 20 month old little girl,

Abigail (Abby) was diagnosed about 2 months ago with Scoliosis. She

had x-rays taken at that time and her curve was measured at 44

degrees. She had an MRI 2 weeks ago and the doctor said that

everything else is fine, just her scoliosis. We had a visit last week

with Dr. Hresko out of Children's Hospital in Boston, MA and he

suggested the serial casts and explained that about every 6 weeks she

would have a new one and have to be put under anesthesia for the

procedure. After watching what she went through just for the MRI the

week before, I couldn't picture going through that again with her

every 6 weeks. So Dr. Hresko is going to put her in a Boston Brace on

November 3. From what he has told me it's a prototype brace using a

Boston Brace that they're working on that will be able to be adjusted

as her curve hopefully improves. I'm so new to all of this and any

information that any of you have would be so helpful! Some articles

I've been reading say that braces don't correct...then I read of some

that do. It's all very confusing right now. Also, I guess I have the

common questions too about how to diaper wearing the brace, will she

be comfortable in her carseat or highchair? The Dr. said she should

be in it at all times except for baths for right now. Any information

you can share with me would be appreciated! I look forward to getting

to know you all!

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

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hi natalie,

i will end up phoning you, but just wanted to ask a couple of questions re

children's casting:

1. normally the casts are changed a little less frequently, even for little

kids -- 8-12 weeks? others with smaller kids can describe this better than i

can since lucas was casted older.

2. did dr. hresko describe the cast at all? there are some orthos around the

country doing casting, but they add a leg or an arm and not just around the

torso. also, miss mehta likes the over the shoulders cast, but erie has decided

to just have the cast come up to the armpits. plus, the stomach hole cut out

and back hole cutout is important. did you get a chance to look at lucas'

pictures? those are the type of casts that erie does although they have

included waterproof casts in there which we did not do.

anyway, just a couple of points that i would ask. i know that heather hyatt

(who runs isop and this board) would know better than me whether or not dr.

hresko was ever trained by dr. sanders and the staff there on the mehta casting

technique.

plus, i want to also emphasize as jennifer v. has said, to read the mehta paper

in the files section.

deshea

---- Original message ----

>Date: Wed, 25 Oct 2006 13:05:14 EDT

>From: Lkyla@...

>Subject: Re: New Here

>infantile scoliosis treatment

>

> Hi everyone,

> You all seem so shocked that Children's is offering

> the casting method and

> from what I can gather, I guess they hadn't been in

> the past. When I was at

> Abby's appointment last week with Dr. Hresko to

> discuss Abby's MRI (which

> thank god, turned out to be fine), he then suggested

> using a " cast " to fix her

> curve that would be replaced every 6 weeks or so and

> that as her curve improved

> that the degree of the cast would be altered as a

> new one was applied and of

> course, he told us that Abby would have to have

> anesthesia for this

> procedure. Now I am very new to all of this so I

> don't want to mislead any of you.

> That's exactly what he had said and from the

> research I have done, it seems

> to be the same casting technique??? I haven't read

> of any other's out there.

> He said that for years, Children's had been a

> strictly bracing institution

> and that just recently they had reconsidered the

> idea of casting. Also I

> guess from what he said that the Boston Brace that

> Abby is going into is not a

> typical Boston Brace. How it is going to be

> different, at this point, I can't

> tell you because I'm not familiar with a Boston

> Brace to begin with. :) Dr.

> Hresko said that this type of brace has only been

> used a handful of times at

> Children's and that it has proven successful but

> that it takes dillegence on

> the parent's part. NOPCO which is the company

> actually making the brace

> assured us (altough I know, no one can really assure

> you anything about your

> child when it comes to scoliosis) that this brace

> will straighten her back. I'm

> still very confused with the pro's and con's of each

> method and I know we

> don't have much time to keep contemplating different

> options where Abby is

> growing so rapidly. So I guess we're going to wait

> and see what this brace is

> actually like next Friday and just pray. I guess

> that's all we can do at this

> point. Dr. Hreskp wants to see her 6 weeks later and

> at that time, if her

> curve has gotten worse, we will reconsider the

> casting method. I hope this

> helped clear up any confusion. From the sounds of

> it, like I have said, it

> sounds like the casting method you are all talking

> about...I hope so!!!

>

>

> [Non-text portions of this message have been

> removed]

>

>

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  • 2 weeks later...

Hello,

I'm new here.

I think my son has ocd, he keeps telling me that he is hearing voice in his

head. As he says its like having a good side and a bad side.

He is also very anxious, washes his hands all the time as well.

I'm just not sure what to say to him as regards the voices.

Any advice would be great.

Val

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Welcome - this is a great place for help - I don't have any experience

with voices and OCD - more of just a need to do the rituals and yes

they are being " told " to do it - but my daughter never mentioned

actual voices - hope some others will chime in soon - good luck - does

he get stuck washing and doing other things??

Eileen

are you from Ireland?

Quoting Val <magnumlady@...>:

> Hello,

>

> I'm new here.

> I think my son has ocd, he keeps telling me that he is hearing voice in his

> head. As he says its like having a good side and a bad side.

> He is also very anxious, washes his hands all the time as well.

> I'm just not sure what to say to him as regards the voices.

>

> Any advice would be great.

> Val

>

>

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My son also says he hears voices in his head. As a matter of fact, the

psychiatrist always asks if the voices are just in his head or whether

he's hearing voices from outside such as from the tv, etc. He says

they are just in his head. I think it's the ocd thoughts telling him he

must do certain rituals or something bad will happen. We're still

working on getting the right medicine so that he can be receptive to

therapy. Just wanted to let you know other ocders say they hear

voices. Good luck, Patty

>

> Hello,

>

> I'm new here.

> I think my son has ocd, he keeps telling me that he is hearing voice

in his

> head. As he says its like having a good side and a bad side.

> He is also very anxious, washes his hands all the time as well.

> I'm just not sure what to say to him as regards the voices.

>

> Any advice would be great.

> Val

>

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