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Lili,

I have heard of that, but I am not experiencing it. Maybe because I

was " only " obese for fifteen years, not my entire adult life and not

at all as a child. Many other people have mentioned it at one time

or another.

Marta

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> ya know how surgery is a risk for overweight people?? isnt any

> surgery a risk for anyone no matter what size they are?? i was

> reading an article and thats why im asking

>

> vicki

Of course, it is a risk. Most people have a less than one percent

chance of dying from surgery, though.

Marta

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I'm thinking that my

> weight was my friend for so long that it bothers me about it going

away. Do

> I sound crazy?

>

> Lillie

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

Lillie I don't think your crazy at all...I have heard of others with

simular feelings. Me personally I never was bothered by my Fat

leaving...in fact that part thrilled me. But...I would sometimes

get to feeling a bit uncomfortable with the fact that I was losing

weight with little to no apparent effort on my part. Thoughts along

the lines of wondering if the weightloss would stop at the right

time or would I become toooo thin and sick. Our brains have been

programmed to believe that if we are eating AND losing weight

something must be wrong with our health. Almost feelings of guilt

because it seemed tooooo easy, I wasn't suffering enough to get the

results of losing weight. Any how it wasn't " strong " feelings of

unease...but it did occasionally pop up...Then I would just BEAT

those feelings and thoughts down and let my logical side Rule.

Great Topic Lillie...I hope you get a few different prospectives.

Jo

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In a message dated 8/12/2003 12:38:14 AM Central Daylight Time,

plwboy2@... writes:

> ya know how surgery is a risk for overweight people?? isnt any

> surgery a risk for anyone no matter what size they are?? i was

> reading an article and thats why im asking

>

> vicki

>

vicki,

Anything has risks...Even crossing the road. The percentage is low

and you must balance the risk with the risks of remaining morbidly obese. I

knew there was a risk when I had surgery, but the benefits of a successful

surgery were way more than any risks I took. I also picked the best

surgeon(IMO)for

my situation.

in Bama

My story- http://hometown.aol.com/mdl1031/myhomepage/profile.html

Pictures- http://f2.pg.photos./Melleedawn

Surgery- RNY to DS revision on12/6 -377.5

12/17 - 346.5 ( minus 31lbs)

02/12-330.0 (minus 47.5 lbs)

05/12- 304.8 (minus 72.7 lbs)-BMI now 48

06/22- 290.8 (minus 86.7)BMI 46.

08/11- 285.4 (minus 92.1)

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  • 2 weeks later...

Geeeezzzzz, Dennis....

Rooster combs? Where in the world do people come up with stuff like that? I

was told I would only be getting three injections. I shall ask about the

" five " .

How would I know if I was allergic to hyaluronan? I've never heard of that

before. Why would I have taken it? All those side effects are " too much

information " .... :o) My Rheumatologist told me that only about fifty percent

that try it get relief. I hope I'm one of them. Have you ever tried it?

Rooster combs????????????????? :o) I guess it's better than chicken

lips... :o)

xxoo

Mi. Carmen

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Carmen sweety,

That is what I was going to have done with my right knee in 1998. After

several xrays though, it was decided that my knee was too far gone for

those injections to work. Also I had been getting Coritsone shots in the

knee since 1987, so we had " saved " the knee as long as possible. It

was then that I had the knee totally replaced. I have never been sorry.

I'm wondering why he said the Cortisone shots wouldn't work? Well, he

must know, and I truly hope that these " rooster comb " injections help

you Carmen. I know your knees have been bothering you for quite some

time now.

Don't worry too much about the " rooster comb " thing. Meds are made from

many " strange and different " things. I've heard that Premarin is made from

horse pee.

Am very much looking forward to meeting with you once more Carmen!

Your friend, tricia

*****************************************************************************

*

-- question

I went for my two month Rheumatologist appointment today and moaned and

groaned about how my knees hurt. Since my lab work came back spectacular

and I

have no inflammation, he said a Cortisone shot will not work and wants to

try

Hyalgan. It's a once a week injection that will oil or lubricate the thing

in my

knee that has thinned. Can't think of the word. .... something with a " V " .

It seems pretty expensive...$500.00 and I'm hoping that's for the three

injections not just one.

Has anyone ever heard of it or tried it? I'm counting on Caroline and Jen

to

give me their input. You guys know everything!!! :o)

xxoo

Mi. Carmen

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Hi Tricia,

My Rheumatologist tried Cortisone shots in both knees and it did piddlely

pooh! He told me yesterday that Cortisone will not work on me as I have no

inflammation there, only that thinning of the something or another starting with

a

" V " . Soooooooo he asked if I'd like to try that other thing. I said no at

first because I am a chicken (not a rooster) regarding trying new medications.

Then I thought....why not?!!! My knees couldn't hurt any worse and it just

might help. I'll let you all know if it does.

xxoo

Brrrawwwwkkkk....I mean, Carmen

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  • 3 weeks later...

No you cant....coconut is sometimes subbed for pko but you have to run it

back through the lye calculator..not sure what other adjustments you have to

make

but I do know that palm and pko are not alike at all.

Shana

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Hi, I was told you can't as the sap values are different. But you can use

Coconut oil. Am I right or wrong soapy experts ? hugs, .

Question

Does any one here know if I can subsitute palm oil for palm kernal

oil? I have a recipe that is calling for palm kernal and all I have is

palm oil. Thanks in advance!

Kim

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No, Palm oil is the veggie alternative to tallow and lard, not PKO. PKO is very

similiar to coconut oil but with slightly different properties and a different

SAP.

Question

Does any one here know if I can subsitute palm oil for palm kernal

oil? I have a recipe that is calling for palm kernal and all I have is

palm oil. Thanks in advance!

Kim

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Hi ,

We did not need a full medical work-up. All we did was take our son to his

developmental pediatrician (different than his normal ped for illness and

well-checks). She is the one that diagnosed him. If you are not even up

for that before the IEP meeting, I would start by dissecting what you think

your son's needs are. DS or Autism or both it doesn't matter they should

be addressing all of his needs on his IEP. Have your current therapists

help you decide what needs should be addressed on his IEP (maybe they will

even attend the first meeting with you---mine did) and then they can give

tips to the school on how they have best found to work with your son. You

can always come up with the diagnosis of autism at a later date and change

the IEP around but my guess is, if it is a good IEP addressing your son's

needs, it won't need many modifications other then the diagnosis added. It

may open up an autism program at the school to you if that is an option in

your school district.

A side note to this which might be helpful to many of you out there is to

push to get the letters/notes from your MD's (that have addressed the

autism issue) on what they see as needing to be in place added to any

evaluations. When my son had his multi-factored (MFE) this past May, I

insisted that the behavioral consultant that we worked with along with the

developmental ped and the autism specialist's notes and recommendations all

be included as an addendum to his evaluations. They all, by the way were

recommending lots of speech therapy as well as ABA and extended school

year. I believe that this helps the school take notice of the child's

needs if you have more professional documentation.

I am working very hard to advocate for my son but many times feel that I am

either chasing my tail in the meetings or banging my head on a brick

wall!!!! Very frustrated as I had a meeting today.....I still do NOT have

a signed IEP in place. Could anyone tell me their situation for including

toileting on the IEP??? The school is telling me that they won't put it as

a goal because it is a bodily function and they are not able to control

whether he goes or not....any thoughts out there???

Thanks and good luck to you

karen

At 05:26 PM 9/24/03 -0400, you wrote:

>Hi all I was just reading past e-mail and it was stated that a full

>medical workup is warranted on the diagnosis of autism.. I asked our ped.

>about this and she said we would still follow the D/S recommendation as

>far as any workups. Of course this duel diagnosis is uncommon

>ground. Can someone please advise me on what tests to request and what

>should we be on the look-out for?? I have so many questions for

>everyone, Especially Laurie since she has just walked through this with

>Mic. as far as the preschool goes. Noah will be 3 in Nov. It will be

>months before we get plugged in everywhere and a more specific diagnosis

>as to how the autism is affecting Noah. Until then I don't feel I can

>take on the school in an iep to make sure he gets what he needs. I really

>need as much info on this any can offer. Thanks for anything you can

>share.

>

>

>

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Hi :

First, I think what we usually tell people is if they expect autism, they

should do a head-to-toe evaluation of the child for any other physical

issues. Sometimes chronic pain or discomfort brings about what looks like

it could be autism. Check hearing, celiac testing, thyroid, blood sugar,

all the usual stuff. If your pediatrician has been diligent with this, then

you already have an idea of what is going on with him medically. So you

would look for anything that may be different. T his might include a sleep

study if your child is not sleeping well or may have sleep apnea.

AS for tests specific to autism...

Anyone who is evaluating your child for autism will know what tools to use

as a test. things like the CARS (childhood autism rating scale) or GARS

(gillam autism rating scale) are common tools. There are no blood tests or

specific tests that rule out whether or not your child has autism

If your child has experienced a regression in skills, and is determined to

be otherwise healthy, but have autism, then you may want to consider a

prolonged EEG. This is also recommended for children with out Down syndrome

who have autism onset with a regression in skills. Sometimes there are

small seizures that occur that are not otherwise seen. In this instance,

sometimes different types of seizure medications make a world of difference

for the child.

I hope this is helpful to you.

Joan

At 05:26 PM 9/24/2003 -0400, you wrote:

>Hi all I was just reading past e-mail and it was stated that a full

>medical workup is warranted on the diagnosis of autism.. I asked our ped.

>about this and she said we would still follow the D/S recommendation as

>far as any workups. Of course this duel diagnosis is uncommon

>ground. Can someone please advise me on what tests to request and what

>should we be on the look-out for?? I have so many questions for

>everyone, Especially Laurie since she has just walked through this with

>Mic. as far as the preschool goes. Noah will be 3 in Nov. It will be

>months before we get plugged in everywhere and a more specific diagnosis

>as to how the autism is affecting Noah. Until then I don't feel I can

>take on the school in an iep to make sure he gets what he needs. I really

>need as much info on this any can offer. Thanks for anything you can

>share.

>

>

>

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Hi ,

I hear you. On the IEP goal for the toileting issue. I too, would

not sign the IEP until it is included. Bodily function, true but

there are other issues including that needs to be addressed as a

goal towards self-help skills to become independent. This will also

decrease behavior issues. You stick to your rights on this.

The IEP is to address ALL the child's unique needs (FAPE). Do not

let a school system tell you differently. Do you have an OT assigned

for this related service? This should be requested on the IEP for

it. Your gut says they are wrong and they are.

There are many other issues that will have to be addressed with

toilet training issues. Like does your child have any sensory

issues? When you need a doctor's note to address if there are any

dress codes and child needs to wear loose fitted clothing any

underlying medical issues, etc. When using school transportation

child should not be on the bus for a long period of time as your

your child is being scheduled trained which needs to be addressed. A

visual strategy to accompany along with the toilet training process.

All must be in writing on the IEP. This is just a few to point out

that I can think of for now. I hope you receive more responses. Good

luck.

Irma,15,DS/ASD

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Hi Irma,

I have argued the toileting issue with my school district for one year now.

They refuse to put it on and I won't let the issue die so we keep

revisiting it. I decided that since he is schedule trained that if they

weren't going to include it on the IEP, then they could choose to stick to

the schedule or they could clean him and everything he goes on up every

day. I have just about had it with the school....their only response

is.... " he is not " developmentally there " yet " and " we don't see that ever

at school " .......I know a lot of you out there can empathize with this

one.......I am quite sure my son is not 2 different people between the home

and school environment and they are making it out to be that this is the

case. Very frustrating meeting yesterday that went absolutely nowhere for

almost 2 & 1/2 hours and add to that I have a new pupil service director

that talks to me as if I am the one on the IEP and is very

condescending....yesterday she thanked me for being such an active advocate

for my child......I was enraged!!!! Sorry to vent.

Thanks for the input....I had a feeling I was on the right track but can't

get the school to budge.

At 03:34 PM 9/25/03 +0000, you wrote:

>Hi ,

>I hear you. On the IEP goal for the toileting issue. I too, would

>not sign the IEP until it is included. Bodily function, true but

>there are other issues including that needs to be addressed as a

>goal towards self-help skills to become independent. This will also

>decrease behavior issues. You stick to your rights on this.

>The IEP is to address ALL the child's unique needs (FAPE). Do not

>let a school system tell you differently. Do you have an OT assigned

>for this related service? This should be requested on the IEP for

>it. Your gut says they are wrong and they are.

>

>There are many other issues that will have to be addressed with

>toilet training issues. Like does your child have any sensory

>issues? When you need a doctor's note to address if there are any

>dress codes and child needs to wear loose fitted clothing any

>underlying medical issues, etc. When using school transportation

>child should not be on the bus for a long period of time as your

>your child is being scheduled trained which needs to be addressed. A

>visual strategy to accompany along with the toilet training process.

>All must be in writing on the IEP. This is just a few to point out

>that I can think of for now. I hope you receive more responses. Good

>luck.

>

>Irma,15,DS/ASD

>

>

>

>

>

>--------------------------------------------------

>Checkout our homepage for information, bookmarks, and photos

>of our kids. Share favorite bookmarks, ideas, and other information by

>including them. Don't forget, messages are a permanent record of the

>archives for our list.

>--------------------------------------------

>

>

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,]

s IEP Goal for toileting is for him to assist in the steps to use the

toilet, taking his pants down and pulling them up. It is not specifically

for him to be successful on the toilet just to understand what he should be

doing. So far he has been successful 2x!!! We were all really happy.

Good luck.

Caryn

>From: " M. " <kmh@...>

>Reply-

>

>Subject: Re: question

>Date: Wed, 24 Sep 2003 20:25:06 -0400

>

>Hi ,

>

>We did not need a full medical work-up. All we did was take our son to his

>developmental pediatrician (different than his normal ped for illness and

>well-checks). She is the one that diagnosed him. If you are not even up

>for that before the IEP meeting, I would start by dissecting what you think

>your son's needs are. DS or Autism or both it doesn't matter they should

>be addressing all of his needs on his IEP. Have your current therapists

>help you decide what needs should be addressed on his IEP (maybe they will

>even attend the first meeting with you---mine did) and then they can give

>tips to the school on how they have best found to work with your son. You

>can always come up with the diagnosis of autism at a later date and change

>the IEP around but my guess is, if it is a good IEP addressing your son's

>needs, it won't need many modifications other then the diagnosis added. It

>may open up an autism program at the school to you if that is an option in

>your school district.

>

>A side note to this which might be helpful to many of you out there is to

>push to get the letters/notes from your MD's (that have addressed the

>autism issue) on what they see as needing to be in place added to any

>evaluations. When my son had his multi-factored (MFE) this past May, I

>insisted that the behavioral consultant that we worked with along with the

>developmental ped and the autism specialist's notes and recommendations all

>be included as an addendum to his evaluations. They all, by the way were

>recommending lots of speech therapy as well as ABA and extended school

>year. I believe that this helps the school take notice of the child's

>needs if you have more professional documentation.

>

>I am working very hard to advocate for my son but many times feel that I am

>either chasing my tail in the meetings or banging my head on a brick

>wall!!!! Very frustrated as I had a meeting today.....I still do NOT have

>a signed IEP in place. Could anyone tell me their situation for including

>toileting on the IEP??? The school is telling me that they won't put it as

>a goal because it is a bodily function and they are not able to control

>whether he goes or not....any thoughts out there???

>

>Thanks and good luck to you

>

>karen

>

>

>

>At 05:26 PM 9/24/03 -0400, you wrote:

> >Hi all I was just reading past e-mail and it was stated that a full

> >medical workup is warranted on the diagnosis of autism.. I asked our

>ped.

> >about this and she said we would still follow the D/S recommendation as

> >far as any workups. Of course this duel diagnosis is uncommon

> >ground. Can someone please advise me on what tests to request and what

> >should we be on the look-out for?? I have so many questions for

> >everyone, Especially Laurie since she has just walked through this with

> >Mic. as far as the preschool goes. Noah will be 3 in Nov. It will be

> >months before we get plugged in everywhere and a more specific diagnosis

> >as to how the autism is affecting Noah. Until then I don't feel I can

> >take on the school in an iep to make sure he gets what he needs. I

>really

> >need as much info on this any can offer. Thanks for anything you can

> >share.

> >

> >

> >

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  • 2 weeks later...

Acually this was symstem of my stills too caraline,but the heart rate has been

good for awhile mine too was constant 120 for about 7 months.Funny tho mine

raced too 180 well thats what they clocked it at anyway im sure it was acually

beating faster before the nurse came in to check.This acually happened when i

was first given prednisone,maybe a shock to the system hastnt happened

since.Take care too bad u havta go back in hospital but hope they can help you.

d.Canada

Question

Hi all,

I was wondering if anyone who has or is coming down in dosage of

Prednisolone has experienced a racing heart beat or ectopics -

palpitations or 'missed' beats. I've been having these problems, with a

pulse of over 100 at rest and feeling shaky and anxious, for about 10

days and have now been put on beta blockers. These have helped straight

away. The GP thinks it may be to do with the reducing dose of pred, but

I have found nothing in the research I've done that suggests that this

is common. I will speak to my rheumy next week, but I was wondering if

anyone else has had similar problems.

Hope you're all having a good day.

Love

Caroline 2

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Thanks for replying .

I have my doubts about it being connected to the pred as I've been OK

on it for some weeks and had no heart problems. Anyway, next weeks

tests may throw some light on the subject. Unfortunately, although the

first beta blocker helped, the subsequent 3 have not, so I may need to

call the duty doc today to ask if I should up the dose.

Have a nice Sunday!

C 2

On Saturday, October 11, 2003, at 08:05 PM, Docken wrote:

> Acually this was symstem of my stills too caraline,but the heart rate

> has been good for awhile mine too was constant 120 for about 7

> months.Funny tho mine raced too 180 well thats what they clocked it at

> anyway im sure it was acually beating faster before the nurse came in

> to check.This acually happened when i was first given prednisone,maybe

> a shock to the system hastnt happened since.Take care too bad u havta

> go back in hospital but hope they can help you. d.Canada   

>   Question

>

>

>   Hi all,

>

>   I was wondering if anyone who has or is coming down in dosage of

>   Prednisolone has experienced a racing heart beat or ectopics -

>   palpitations or 'missed' beats. I've been having these problems,

> with a

>   pulse of over 100 at rest and feeling shaky and anxious, for about 10

>   days and have now been put on beta blockers. These have helped

> straight

>   away. The GP thinks it may be to do with the reducing dose of pred,

> but

>   I have found nothing in the research I've done that suggests that

> this

>   is common. I will speak to my rheumy next week, but I was wondering

> if

>   anyone else has had similar problems.

>

>   Hope you're all having a good day.

>

>   Love

>

>   Caroline 2

>

>

>        

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  • 3 months later...

Nola,

I have heard of it. But know nothing about it. I am also wanting to learn a little about this procedure and its long term effects. If anyone knows about this procedure, please educate all of us.

thanks,

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here are some links about vertebral body stapling. it is being done

in phila, pa at the shriners hospital by dr. betz:

http://www.spineuniverse.com/displayarticle.php/article1895.html

http://www.shrinershq.org/whatsnewarch/archives01/viewpoint8-01.html

i don't think that it's been recommended for infantile although they

do have a few young patients one of which also had growing rods put

in. yikes!

recent published article by dr. betz on adolescent scoliosis treated

in this way:

Spine. 2003 Oct 15;28(20):S255-65. Related Articles, Links

Click here to read

An innovative technique of vertebral body stapling for the

treatment of patients with adolescent idiopathic scoliosis: a

feasibility, safety, and utility study.

Betz RR, Kim J, D' LP, Mulcahey MJ, Balsara RK, Clements DH.

Shriners Hospitals for Children, Philadelphia.

SUMMARY: STUDY DESIGN Retrospective review.OBJECTIVES To report

the feasibility, safety, and utility of vertebral body stapling

without fusion as an alternative treatment for adolescent idiopathic

scoliosis.SUMMARY OF BACKGROUND DATA The success rate of brace

treatment of adolescent idiopathic scoliosis ranges from 50% to 82%.

However, poor self-image and brace compliance are issues for the

patient. An alternative method of treatment such as a

motion-preserving vertebral body stapling to provide curve stability

would be desirable.METHODS We retrospectively reviewed 21 patients (27

curves) with adolescent idiopathic scoliosis treated with vertebral

body stapling. Patients were immature as defined by Risser sign

</=2.RESULTS The concept of vertebral body stapling of the convex side

of a patient with adolescent idiopathic scoliosis is feasible. The

procedure was safe, with no major complications and three minor

complications. One patient had an intraoperative segmental vein bleed

resulting in an increased estimated blood loss of 1500 cc as compared

to the average estimated blood loss of 247 cc for all patients. One

patient had a chylothorax and one pancreatitis. No patient has had a

staple dislodge or move during the follow-up period (mean 11 months,

range 3-36 months), and no adverse effects specifically from the

staples have been identified. Utility (defined as curve stability) was

evaluated in 10 patients with stapling with greater than 1-year

follow-up (mean 22.6 months) and preoperative curve <50 degrees.

Progression of >/=6 degrees or beyond 50 degrees was considered a

failure of treatment. Of these 10 patients, 6 (60%) remained stable or

improved and 4 (40%) progressed. One of 10 (10%) in the stapling group

had progressed beyond 50 degrees and went on to fusion. Six patients

required stapling of a second curve, three as part of the primary

surgery, and three as a second stage, because a second untreated curve

progressed. The results need to be considered with caution, as the

follow-up is still short.CONCLUSIONS The data demonstrate that

vertebral body stapling for the treatment of scoliosis in the

adolescent was feasible and safe in this group of 21 patients. In the

short-term, stapling appears to have utility in stabilizing curves of

progressive adolescent idiopathic scoliosis.

hope this answers some questions about this procedure.

deshea

north of boston, ma

mom to lucas 26 mo otherwise happy and healthy child with

scoliosis (was 68o and 34o in june and now 34o and 22o in nov) in

boston brace during the day and charleston at night

http://homepage.mac.com/desheaharris/

> Nola,

> I have heard of it. But know nothing about it. I am also wanting

to learn a

> little about this procedure and its long term effects. If anyone

knows about

> this procedure, please educate all of us.

>

> thanks,

>

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" an increased estimated blood loss of 1500 cc , chylothorax and one

pancreatitis " .......

These are considered MINOR?????? Am I way off here?? Ive never had a

child in major back surgery, so I dont mean to be rude, but .....

those dont seem like " minor complications "

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I added your links to the LINKS page. Hope thats okay....

> > Nola,

> > I have heard of it. But know nothing about it. I am also wanting

> to learn a

> > little about this procedure and its long term effects. If anyone

> knows about

> > this procedure, please educate all of us.

> >

> > thanks,

> >

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no problem whatsoever. i want everyone to be informed about the

options that are out there surgically since some of the orthos push

surgery and talk about cutting edge techniques, but they definitely do

not know the long term effects especially on infants. coming informed

to these appts is very important. i'm not saying that some surgical

techniques should not be taken seriously by parents, but you have to

know the risks involved.

deshea

> > > Nola,

> > > I have heard of it. But know nothing about it. I am also wanting

> > to learn a

> > > little about this procedure and its long term effects. If anyone

> > knows about

> > > this procedure, please educate all of us.

> > >

> > > thanks,

> > >

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Thanks for the replies about the vertebral stapling surgery. My daughter has a

30º lumbar curve and has been successfully brace for this since she turned 2

(she has been wearing it 2 3/4 years and so she's 4.5 years old now). She was

diagnosed at age 18 months, at which time her curve was 20º and she was

currently undergoing treatment for developmental dysplasia of the hip. She had

a pelvic osteotomy to correct this and wore a spica cast for 8 weeks following

the surgery. At that time, I thought her curve had worsened and this was

confirmed by x-ray six weeks after the cast came off. Her scoliosis is

idiopathic.

Her curve corrects quite well while the brace is on, though right now I can't

remember the numbers (it is between 10-20º with the brace on). We see Dr.

Lubicky at Shriners in Chicago.

Our next appointment is at the end of February, and we are to have our daughter

out of her brace for at least 6 hours prior to the appointment. We'll then have

x-rays, and based on those, Dr. Lubicky is going to decide if she is okay to

have part time bracing. However, if the x-rays are not favorable, he wants to

start considering her for the vertebral stapling surgery. From what I

understand, he and the doctor at the Philadelphia Shriners would be doing the

surgery together if we decided to go this route.

Though to be honest, right now I think her back isn't looking as good when the

brace is off, so I am not holding my breath that we'll be able to do part time

bracing.

Thanks for the links, it was very interesting to read about, though I do wish

the articles were newer, because I know Dr. Lubicky said he has performed more

of these procedures than those studies indicated have been done, and more of

them have been performed on children closer to my daughter's age.

Nola

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