New Member

Report post · December 12, 2004

Welcome to the group !!!

MISSY

SAHM to some special kids!!!

I am who I am because that's who I am

--, 5, Aspergers

All kids are gifted; some just open their

packages earlier than others.

-- Carr

New member

>

> Hello, my name is and I am the father of an 8 year old boywith

> Aspergers. He was diagnosed about 2 years ago. I look forward to the

> discussion and hope to pick up a gem or two.

>

Report post · December 13, 2004

Welcome , you will find ALOT of gems here! I am , mom to 3 boys, oldest of whom, Alonzo s 6 and dx'd w/ HFA.

jhold4th <jhold4th@...> wrote:

Hello, my name is and I am the father of an 8 year old boywith Aspergers. He was diagnosed about 2 years ago. I look forward to the discussion and hope to pick up a gem or two.

__________________________________________________

Report post · December 13, 2004

I was flying everywhere yesterday so in case I didn't welcome you , WELCOME!! There is a lot of information in this group and I hope you enjoy it here.

I'm Missy and mom to 5 kids with 3 on the spectrum and one pending diagnosis.

MISSYSAHM to some special kids!!!

I am who I am because that's who I am--, 5, Aspergers

All kids are gifted; some just open theirpackages earlier than others.

-- Carr

Re: New member

Welcome , you will find ALOT of gems here! I am , mom to 3 boys, oldest of whom, Alonzo s 6 and dx'd w/ HFA.

jhold4th <jhold4th@...> wrote:

Hello, my name is and I am the father of an 8 year old boywith Aspergers. He was diagnosed about 2 years ago. I look forward to the discussion and hope to pick up a gem or two.

__________________________________________________

Report post · December 13, 2004

Welcome !

This site has been a wonderful resource for me. May you find it to be

the same for you!!!

Rabecca

>

> Hello, my name is and I am the father of an 8 year old boywith

> Aspergers. He was diagnosed about 2 years ago. I look forward to

the

> discussion and hope to pick up a gem or two.

>

Report post · December 16, 2004

Tracey,

Welcome to the group and Thanks for sharing your story!

There are many educated, genuine parents in this group that have infants/young children with congenital scoliosis.

Some have had the Titanium Rib, some have had fusion, some have had halo's and braces, some have had nothing yet......

This group of parents is awsome, and can definately help shed a little light on your upcoming journey.

Thanks for joining CAST.

Sincerely,

HRH

Report post · December 16, 2004

Hi Joan, welcome. I am Terry 31 Yrs old SMA Type 3 living in Florida.

I walk without aides although it's not real pretty. I was diag. at 30

yrs old. I have had problems since about 8 but was mis-diag. several

times. My wife and I lived in KS. for a year until 1 1/2 " yrs ago she

is from there near Wichita in Eureka. I went to the Mayo Clinic in

MN. and found out with a DNA test. I am glad to hear your getting

along so well. When did you start having troubles with walking on

your own? Also are your respiratory troubles do to SMA. I hope I;m

not getting to personal I am still trying ti figure this disease out.

Anyway welcome to the board I hope you enjoy it and I look forward to

talking to you again.

Terry

Report post · December 16, 2004

Hi Joan,

I'm Tom. I'm 34, diagnosed with type 3 at 15. I still do walk around the house

and at the office but I usually rely on a cane and lately there have been days

where that's even too risky. I use a wheelchair when I go out which isn't very

often anymore. A little while ago a friend of mine who works for a medical

supply company gave me an electric wheelchair for my birthday. I love it but I

can't use it on my own until I get a van. I'm clinging to my Toyota truck for

as long as I can. I'm 6' tall so it has the height to let me get in and out on

my own. I have sleeping issues too. Mostly I can't shut my mind off at night,

seems like I worry constantly. On the occasion when I do sleep well I usually

feel really good the next day. Anyway, welcome to the group!

Tom

New member

Hi, my name is Joan, I'm from KS, 46 y.o. with SMA III. I was dx'd

at age 6. I still walk in my apartment & got an electric chair a

little over a year ago. I've socked on 45 lbs. in 4 years but at my

ideal weight I can walk w/cane. Getting it back off isn't easy.

I use a stationary bike for exercise at home. My biggest problem is

sleep. I have a bipap machine but never able to go to sleep with it

on. It could be somewhat situational, my sleep trouble, as it seems

to have gotten chronic after I quit working 10 years ago. I worked

fulltime for the state of ks and have retirement from there, have

been going to school since going on disability and have 2/ 2 year

degrees one in music and the other in human services/gerontology. I

love to exercise, go to church, animals, & the internet . Oh, I'm

still single, live in apartment w/ my parakeet Mr. Blue

Goosebottom.

Joan

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Report post · December 16, 2004

Carmel & HRH

Thanks so much for the welcome.

HRH, I stumbled across your website a couple of nights

ago while doing research, good to know you are also

here! Your knowledge and perseverance were amazing to

me. I hope that I can learn from you, and everyone

else here.

Carmel, my original ortho had extensive experience,

and was highly recommended by a few physicians that I

know (I work with osteopathic physicians myself).

Unfortunately he was recently diagnosed with lung

cancer, and is on extended leave of absence, his

return to work unknown. We are now with a new doc,

younger, but he stated that he was experienced, and

had previously practiced in Chicago with pediatric

ortho patients. He seemed knowledgeable, and

confident, and like you stated advised that he would

xray every 3-4 mnths, and that this monitoring would

continue for several years. So far, the

tests/treatments that have been recommended has been

consistent with what I have read. However, I look

forward to being confident in my own knowledge to

question as necessary.

Her wedge is below the rib cage - about 3 vertabrae

below, so I presume that is classed as lumbar? She

hasn't had any bowel problems - definitely not

constipated that's for sure!

I had a few concerns the past couple of nights - her

knee (I believe it was) popped while in bed with me -

she had woken with a stuffy nose, so I was nursing her

back to sleep - I heard a pop as I was positioning

her, and it happened again last night. The first

night I felt it as it occurred on her knee - but I

only heard it last night. I have concerns now, as I

know you have to watch for hip issues. Although there

is no outward sign of problems, and she uses both

without problem, sitting assisted etc. I know,

probably worrying over nothing - but that's my job

isn't it? lol

Anyway - thanks so much for welcoming me, I look

forward to getting to know you all.

Tracey

--- Carmell Burns <cjbmom23@...> wrote:

> Hi Tracey,

>

> Welcome to the list! Congratulations on your little

> bundle of joy. I'm sure she is absolutely adorable.

>

> It sounds like you have good medical care for her.

> The tests she's had done are good - they need to be

> done to make sure she doesn't have any hidden issues

> to worry about. Glad to hear the renal tests were

> fine.

>

> Like said, there are several treatment

> options

> for congenital scoliosis. Lumbar scoliosis is not

> quite as common as thoracic scoliosis, nor is it as

> involved (meaning there are fewer risks of involving

> other internal organs). Having an MRI will be good.

>

> Please keep us posted on the results. My suggestion

> is to call ahead and ask a neuroSURGEON to read the

> actual scan of the MRI, and not just the

> radiologist's

> report. Sometimes the neurosurgeon can see things

> that are missed by a radiologist. Does she have

> constipation issues? Sometimes babies will be find

> until they start solid foods. Something to keep an

> eye on.

>

> She should have xrays to monitor the scoliosis every

> 3-4 months until she is 2-3 years old. The spine

> will

> have a major growth spurt sometime before then.

> That's usually when there would be a change in the

> scoliosis, if its going to happen at all. Sometimes

> the scoliosis will actually get better with a growth

> spurt, because of the shape and formation of the

> bone

> structure (vertebrae). Doess your ped. ortho have

> extensive experience in treating infants/young

> children with congenital scoliosis? If not, please

> make sure you find one who does. There are people

> from all over the world on this list, so if you

> would

> like suggestions from other parents, I'm sure you

> could get great recommendations here. Even if your

> ortho is great, getting another opinion isn't bad

> (and

> its certainly not meant to insult your current

> ortho).

> Scoliosis in infants and very young children is

> unique. You want to make sure you make the right

> choices for her.

>

> You mentioned " extraction " of the vertebrae. I know

> of several children who had a hemivertebrae excision

> done to remove the wedge shape, then fuse the

> vertebrae above and below the excision. These kids

> are doing great! This is a one-time surgery, and

> one

> of the few cases where a fusion is warranted sooner

> than later. If you have more questions, let us

> know!

>

> My best!

>

> =====

> Carmell

> mom to Kara 18, idiopathic scoliosis, Blake 13, GERD

> and Braydon 9, VACTERL, GERD, DGE, Titanium Rib

> Project patient #137 (dbl implant 8/01), thoracic

> insufficiency, rib anomalies, congenital scoliosis

> (fusion surgery 5/96), missing coccyx, fatty

> filum/TC (released 4/99), anal stenosis, chronic

> constipation, horseshoe (cross-fused) kidney, dbl

> ureter in left kidney, ureterocele (excized 6/95),

> kidney reflux (reimplant surgery 1/97), neurogenic

> bladder, bilateral hip dysplasia, right leg/foot

> dyplasia, tibial torsion, clubfoot with 8 toes

> (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus,

> bicuspid AV, single umblilical artery,

> tonsil-adnoidectomy and ear tubes (3/98), etc.

>

> __________________________________

> Do you ?

> - 250MB free storage. Do more. Manage

> less.

> http://info.mail./mail_250

>

__________________________________________________

Report post · December 17, 2004

Tracey,

I found out my son had scolosis when he was 6 months

old after his open heart surgery. And I was also

uninformed about this condition. I saw 2 different

ortho's which only 1 of them wanted to do surgery and

in the mean time they put him in a TLSO brace that did

not do any good. And he was too small for surgery.

Until I found and she told me to get him in a

cast ASAP and we did. And it has been wonderful to

get treatment without surgery. Yes you do have a

right to worry. It is a very serious condition that

can lead to breathing problems and sometimes crushing

of the lungs if not treated early. The best treatment

is early treatment and not later. I waited and now it

is going to take that much longer to fix my son's

curve. He is right now without cast at 66 degrees

with cast is at 52 degrees. So as you can see this is

an improvement. You can feel free to email me

personally or call me. I live in Colorado my number

is 970-308-2691 call anytime if you have questions.

Amy and Jaeden

--- Tracey <tctheaussie@...> wrote:

> Hello everyone,

>

> My name is Tracey, and I have just joined this

> group.

> We have a 5mth old baby girl named le, who

> was

> diagnosed at 3 days of age with congenital

> scoliosis.

> It was a fluke this was detected, as they were

> actually taking an x-ray of her abdomen as they

> suspected a herniated umbilical cord (this proved to

> not be the case, she just had excess skin like an

> oversized 'outtie', which may be surgically

> corrected

> later on.

>

> We have been referred to an pediatric orthopedic

> surgeon. She has been seen twice, had an additional

> set of x-ray's done, renal ultrasounds and will have

> an MRI under sedation in January. Her next follow up

> is in March. Her ultrasounds were clear.

>

> I'm not very cluey on the subject, but have been

> trying to learn as much as I can through research.

> So

> far, she doesnt seem to have most of the outward

> signs

> that have been depicted on various sites, but I

> realise it is very early days. Her curvature is

> lower

> (lumbar??) and I believe the surgeon said 33% and

> had

> not progressed at this stage. He advised he

> considered her case 'moderate'. I haven't asked

> many

> questions as yet - basically due to my own lack of

> knowledge, and now the more I read, the more

> questions

> I have.

> She has one vertabrae that has not formed correctly

> -

> and is like a 'wedge' shape, and this is causing the

> curvature.

> For now I am of course concerned, my husband

> believes

> that she will be fine, and is comforting me telling

> me

> I am worrying unnecessarily. I appreciate his

> comfort

> of course, but I would like to be forewarned, so if

> necessary I have options open to me, second

> opinion's

> and the knowledge of where to go for the best care.

>

> I did read about 'extraction' of wedge vertabrae,

> but

> also read this was particulary risky. Its certainly

> not all good news out there as regards treatment -

> at

> least from what I have read so far.

>

> We have 2 other children, Ian (17) and (15)

> from

> my first marriage - Yes, le was a suprise

> package - our little miracle baby girl, we had tried

> for 3 years without success and had given up

> conceiving, 2 years later I'm pregnant!

>

> Anyway, I have rambled long enough. I look forward

> to

> getting to know you all and hopefully learning from

> you!

>

> Tracey

>

> __________________________________________________

>

Report post · December 17, 2004

Amy,

Hi... thanks for replying to me.

When I was first alerted to le's condition by

the attending pediatrian at the hospital, he was very

stern, serious but not forthcoming about what this

condition actually meant. You can imagine how it made

us feel as new parents! My sons were in the room too,

as was my mum, and we were all looking at each other

saying well.. what does this mean? Is she disabled,

will she be able to walk - he seemed in a hurry to

continue his rounds, and I was left with such an awful

feeling in my stomach.

From that point I started looking up the condition,

and found it hard to find stuff related to pediatric

congenital... until I realised it was termed

'infantile' scoliosis!!!

I see so many serious cases depicted, and my hearts

just break for these darling children.

At this point, her curve is due to a wedge shaped

misformed vertabra, which is in the lumbar region -

below her ribcage. All organs are working properly -

renal ultrasounds came back clear. The MRI will be

another milestone, but I'm sure I wont get the results

until we see the ortho again, which means a wait until

March 25 - but the mri is Jan 5. Hopefully there will

be some form of MD there that will be able to give me

an idea, I hate the waiting game.

Anyway, I know I have a few years to wait before we

know for certain the direction her scoliosis is

taking. Until then, a lot of positive vibes, praying,

and waiting.

In the interim its a fight with the insurance co, as

they keep asking for referrals from her PCP each time

we see the ortho, denying payment initially... its a

pain in the butt, as she didnt have a PCP at birth,

and the pedi at hospital did all referrals. Its a

real pain in the *ss. Hopefully if further treatment

is required they won't be so difficult. Time will

tell.

I found a hospital in Plano TX that specializes in

infantile scoliosis care - during my research on the

net. I'm curious how the insurance would react should

I want to seek 2nd opinons etc., out of state? Anyone

encounter this at all?

Well, better go, its late!

Good nite all!

Tracey

--- Amy on <_amos@...> wrote:

>

> Tracey,

> I found out my son had scolosis when he was 6 months

> old after his open heart surgery. And I was also

> uninformed about this condition. I saw 2 different

> ortho's which only 1 of them wanted to do surgery

> and

> in the mean time they put him in a TLSO brace that

> did

> not do any good. And he was too small for surgery.

> Until I found and she told me to get him in

> a

> cast ASAP and we did. And it has been wonderful to

> get treatment without surgery. Yes you do have a

> right to worry. It is a very serious condition that

> can lead to breathing problems and sometimes

> crushing

> of the lungs if not treated early. The best

> treatment

> is early treatment and not later. I waited and now

> it

> is going to take that much longer to fix my son's

> curve. He is right now without cast at 66 degrees

> with cast is at 52 degrees. So as you can see this

> is

> an improvement. You can feel free to email me

> personally or call me. I live in Colorado my number

> is 970-308-2691 call anytime if you have questions.

>

> Amy and Jaeden

> --- Tracey <tctheaussie@...> wrote:

>

> > Hello everyone,

> >

> > My name is Tracey, and I have just joined this

> > group.

> > We have a 5mth old baby girl named le, who

> > was

> > diagnosed at 3 days of age with congenital

> > scoliosis.

> > It was a fluke this was detected, as they were

> > actually taking an x-ray of her abdomen as they

> > suspected a herniated umbilical cord (this proved

> to

> > not be the case, she just had excess skin like an

> > oversized 'outtie', which may be surgically

> > corrected

> > later on.

> >

> > We have been referred to an pediatric orthopedic

> > surgeon. She has been seen twice, had an

> additional

> > set of x-ray's done, renal ultrasounds and will

> have

> > an MRI under sedation in January. Her next follow

> up

> > is in March. Her ultrasounds were clear.

> >

> > I'm not very cluey on the subject, but have been

> > trying to learn as much as I can through research.

>

> > So

> > far, she doesnt seem to have most of the outward

> > signs

> > that have been depicted on various sites, but I

> > realise it is very early days. Her curvature is

> > lower

> > (lumbar??) and I believe the surgeon said 33% and

> > had

> > not progressed at this stage. He advised he

> > considered her case 'moderate'. I haven't asked

> > many

> > questions as yet - basically due to my own lack of

> > knowledge, and now the more I read, the more

> > questions

> > I have.

> > She has one vertabrae that has not formed

> correctly

> > -

> > and is like a 'wedge' shape, and this is causing

> the

> > curvature.

> > For now I am of course concerned, my husband

> > believes

> > that she will be fine, and is comforting me

> telling

> > me

> > I am worrying unnecessarily. I appreciate his

> > comfort

> > of course, but I would like to be forewarned, so

> if

> > necessary I have options open to me, second

> > opinion's

> > and the knowledge of where to go for the best

> care.

> >

> > I did read about 'extraction' of wedge vertabrae,

> > but

> > also read this was particulary risky. Its

> certainly

> > not all good news out there as regards treatment -

> > at

> > least from what I have read so far.

> >

> > We have 2 other children, Ian (17) and (15)

> > from

> > my first marriage - Yes, le was a suprise

> > package - our little miracle baby girl, we had

> tried

> > for 3 years without success and had given up

> > conceiving, 2 years later I'm pregnant!

> >

> > Anyway, I have rambled long enough. I look

> forward

> > to

> > getting to know you all and hopefully learning

> from

> > you!

> >

> > Tracey

> >

> > __________________________________________________

> >

Report post · December 17, 2004

Welcome, Donna! You sound like a very bright lady...and a very busy one, as

well. Three children...with disabilities? I see that often on this support

list, and it makes me stop whining immediately about my one daughter!

I've not heard an association with being induced and disabilities? My

biological son was induced; no problems. Our adopted daughter is the one

with the challenges (AS/bp/social anxiety). She's 16 now.

Maralee

>^..^<

new member

Hello all, I am a new member. I have been pretty overwhelmed lately.

Our almost 4 y/o is currently being evaluated for ASD/PDD...we are

in the middle of the process right now & dont have a concrete

diagnosis, but he is pretty delayed. I also have a 14 y/o DD who has

ealry onset BiPolar disorder (currently in a group home/treatment

facility) and a almost 2 y/o who has some orthopedic birth

defects/disabilities.

DH & I are in graduate school and I am now facing the possiblity of

having three of my 5 kids who have various disabilities...and

somehow it seems so much more than two. I am starting to rethink my

career plans and my life plans in general.

I am just starting to find out info about ASD/PDD and have found the

web very useful. I am also finding that DS will probably be

diagnosed with at least PDD but maybe HFA.

I was induced with that pregnancy as well...even asked the Dr about

the link & she said it had never really been substantiated. I regret

that decision now.

I am looking forward to this group.

Thanks

Donna

Report post · December 17, 2004

Hi Joan -

I'm 34, type 2, and use an electric wheelchair fulltime. I'm married

and have two daughters. Getting extra weight off is incredibly hard. I

have to practically starve myself to see steady progress, but I have to

be really careful I eat enough good stuff to maintain the muscles I do

have. I can't really move enough to do good, steady exercise, and if I

try to lift weights or something, my energy is completely shot for the

day after about 10 minutes. Ugh! Anyway, welcome to the group!

BTW, I like your parakeet's name.

Jenn

>Hi, my name is Joan, I'm from KS, 46 y.o. with SMA III. I was dx'd

> at age 6. I still walk in my apartment & got an electric chair a

> little over a year ago. I've socked on 45 lbs. in 4 years but at my

> ideal weight I can walk w/cane. Getting it back off isn't easy.

> I use a stationary bike for exercise at home. My biggest problem is

> sleep. I have a bipap machine but never able to go to sleep with it

> on. It could be somewhat situational, my sleep trouble, as it seems

> to have gotten chronic after I quit working 10 years ago. I worked

> fulltime for the state of ks and have retirement from there, have

> been going to school since going on disability and have 2/ 2 year

> degrees one in music and the other in human services/gerontology. I

> love to exercise, go to church, animals, & the internet . Oh, I'm

> still single, live in apartment w/ my parakeet Mr. Blue

> Goosebottom.

> Joan

>

--

Jenn Malatesta

http://www.isoc.net/brokeninside/nekrosys/

Report post · December 17, 2004

Hello Tracey,

Welcome to the group. My daughter Moriah (www.infantilescoliosis.org) has congenital scoli. in the thoracic spine. I found two articles which helped me better understand all types of congenital scoliosis. I will include the names at the bottom. I can only stress that you keep a very close eye on your daughter's curve and be planning a course of action now. I think a wedge vertebrae is one of the slower progressing vertebral anomalies. Whatever you do, don't do nothing. The doctors will probably suggest to wait and watch. Children do most of their growing in the first two years of their lives. The curve can grow also. I am glad you have such a caring husband to stand with you in this struggle. I have found my husband to be both a strength and a comfort as well. Please keep us posted on le's MRI results and your plans for her health. Here are the

articles . . .

Sincerely,

Shellie Grant

IV Lecture

Congenital deformities of the Spine

M.J. McMaster

Edinburgh Spinal Deformity Centre,

Give at Annual Congress of the British Orthopaedic Assoc. Sept 12, 2001

Congenital Spinal Deformity

Found on emedicine.com

Author: Mervyn Letts, MD, FRCSC, FACSC

June 30,2004 (last update)Tracey <tctheaussie@...> wrote:

Hello everyone,My name is Tracey, and I have just joined this group. We have a 5mth old baby girl named le, who wasdiagnosed at 3 days of age with congenital scoliosis. It was a fluke this was detected, as they wereactually taking an x-ray of her abdomen as theysuspected a herniated umbilical cord (this proved tonot be the case, she just had excess skin like anoversized 'outtie', which may be surgically correctedlater on.We have been referred to an pediatric orthopedicsurgeon. She has been seen twice, had an additionalset of x-ray's done, renal ultrasounds and will havean MRI under sedation in January. Her next follow upis in March. Her ultrasounds were clear.I'm not very cluey on the subject, but have beentrying to learn as much as I can through research. Sofar, she doesnt

seem to have most of the outward signsthat have been depicted on various sites, but Irealise it is very early days. Her curvature is lower(lumbar??) and I believe the surgeon said 33% and hadnot progressed at this stage. He advised heconsidered her case 'moderate'. I haven't asked manyquestions as yet - basically due to my own lack ofknowledge, and now the more I read, the more questionsI have. She has one vertabrae that has not formed correctly -and is like a 'wedge' shape, and this is causing thecurvature. For now I am of course concerned, my husband believesthat she will be fine, and is comforting me telling meI am worrying unnecessarily. I appreciate his comfortof course, but I would like to be forewarned, so ifnecessary I have options open to me, second opinion'sand the knowledge of where to go for the best care.I did read about 'extraction' of wedge vertabrae,

butalso read this was particulary risky. Its certainlynot all good news out there as regards treatment - atleast from what I have read so far.We have 2 other children, Ian (17) and (15) frommy first marriage - Yes, le was a suprisepackage - our little miracle baby girl, we had triedfor 3 years without success and had given upconceiving, 2 years later I'm pregnant! Anyway, I have rambled long enough. I look forward togetting to know you all and hopefully learning fromyou!Tracey__________________________________________________

Report post · December 20, 2004

Shellie,

Thank you so much for your encouragement, and the

articles. I plan on searching for those later tonight

& tomorrow.

Sometimes it all seems so surreal - she appears so

normal outwardly, and its like maybe its a bad dream

you know? I'm praying so hard that things either

improve or just remain as they are. But only time is

going to tell.

I watch her daily for any change in her development,

any signs of problems. Right now at 5mths, she's

rolling from back to front & front to back, grabbing

toes, doing her 'push ups', sitting straight

unassisted (for a short periods), and sitting straight

assisted for longer periods. She's on course for

development, and actually a little ahead (she was a

month prem).

Lets just hope the MRI is as positive.

Thanks for your info & help.

Tracey

--- Shellie Grant <shelliegrant@...> wrote:

> Hello Tracey,

> Welcome to the group. My daughter Moriah

> (www.infantilescoliosis.org) has congenital scoli.

> in the thoracic spine. I found two articles which

> helped me better understand all types of congenital

> scoliosis. I will include the names at the bottom.

> I can only stress that you keep a very close eye on

> your daughter's curve and be planning a course of

> action now. I think a wedge vertebrae is one of the

> slower progressing vertebral anomalies. Whatever

> you do, don't do nothing. The doctors will probably

> suggest to wait and watch. Children do most of

> their growing in the first two years of their lives.

> The curve can grow also. I am glad you have such a

> caring husband to stand with you in this struggle.

> I have found my husband to be both a strength and a

> comfort as well. Please keep us posted on

> le's MRI results and your plans for her

> health. Here are the articles . . .

>

> Sincerely,

> Shellie Grant

>

> IV Lecture

> Congenital deformities of the Spine

> M.J. McMaster

> Edinburgh Spinal Deformity Centre,

> Give at Annual Congress of the British Orthopaedic

> Assoc. Sept 12, 2001

>

> Congenital Spinal Deformity

> Found on emedicine.com

> Author: Mervyn Letts, MD, FRCSC, FACSC

> June 30,2004 (last update)

>

> Tracey <tctheaussie@...> wrote:

> Hello everyone,

>

> My name is Tracey, and I have just joined this

> group.

> We have a 5mth old baby girl named le, who

> was

> diagnosed at 3 days of age with congenital

> scoliosis.

> It was a fluke this was detected, as they were

> actually taking an x-ray of her abdomen as they

> suspected a herniated umbilical cord (this proved to

> not be the case, she just had excess skin like an

> oversized 'outtie', which may be surgically

> corrected

> later on.

>

> We have been referred to an pediatric orthopedic

> surgeon. She has been seen twice, had an additional

> set of x-ray's done, renal ultrasounds and will have

> an MRI under sedation in January. Her next follow up

> is in March. Her ultrasounds were clear.

>

> I'm not very cluey on the subject, but have been

> trying to learn as much as I can through research.

> So

> far, she doesnt seem to have most of the outward

> signs

> that have been depicted on various sites, but I

> realise it is very early days. Her curvature is

> lower

> (lumbar??) and I believe the surgeon said 33% and

> had

> not progressed at this stage. He advised he

> considered her case 'moderate'. I haven't asked

> many

> questions as yet - basically due to my own lack of

> knowledge, and now the more I read, the more

> questions

> I have.

> She has one vertabrae that has not formed correctly

> -

> and is like a 'wedge' shape, and this is causing the

> curvature.

> For now I am of course concerned, my husband

> believes

> that she will be fine, and is comforting me telling

> me

> I am worrying unnecessarily. I appreciate his

> comfort

> of course, but I would like to be forewarned, so if

> necessary I have options open to me, second

> opinion's

> and the knowledge of where to go for the best care.

>

> I did read about 'extraction' of wedge vertabrae,

> but

> also read this was particulary risky. Its certainly

> not all good news out there as regards treatment -

> at

> least from what I have read so far.

>

> We have 2 other children, Ian (17) and (15)

> from

> my first marriage - Yes, le was a suprise

> package - our little miracle baby girl, we had tried

> for 3 years without success and had given up

> conceiving, 2 years later I'm pregnant!

>

> Anyway, I have rambled long enough. I look forward

> to

> getting to know you all and hopefully learning from

> you!

>

> Tracey

>

> __________________________________________________

>

Report post · December 20, 2004

I, too, was induced (early) with my now 4 yos who was dx'd with HFA, just recently. I'd heard the link between high-risk pregnancies and magnesium sulfate for pre-term labor and autism, but not induction. Was it the drugs used to induce (such as Pitocin) or something specifically about the process itself? I'd love to know more. None of my other kids were induced (though I did have another preemie) and my 4 yos is the only one with spectrum traits.

Donna

Re: new member

Hi Donna,

I have one son, Cory 3 1/2, who is HFA. He was diagnosed at 26 months old. You said something about a link between being induced and autism? I had heard about a link between a difficult pregnancy (which I had) and Autism, but hadn't heard about the inducment link. I was also induced, a month before my son's due date.

Kerry

Report post · December 21, 2004

Hi Tracey

I'm from Brisbane and yes it is very hot here at the moment. It's humid and stormy with that very xmas feel and the smell of stone fruit and mangoes. i am the mother of the only kid in Australia with a cast on and happy to have one on at that . My daughter Bridget has infantile idiopathic scoliosis and we travelled to England to have her first cast put on in Oct.

In her cast her curve has gone from 38 degrees to 21 which we are very happy with. Bridget had an MRI in June under general anaesthetic. It wasn't her favourite day but she came through it pretty well as did my husband and me.

After xmas Bridge and I go back to England to have her second cast put on. We are all a bit nervous but I'm sure it will be fine. This is a great group you have stumbled on. We all look after each other. Crista's husband calls it "scoliosis Land"

By the way thanks for the santa snaps, I'd forgotten all about picking mine up from the shops. The kids look adorable. I won't put mine up as ours was a 'spur of the moment ' santa photo. There were only three of my four children present, we were not dressed in xmas clothes so will probably clash terribly with Santa and Bridget made me get in the photo so I probably will look like a frazzled mother of 4 who should really be in getting the groceries. I can't wait to see it.

well Tracey be good or Santa won't find you

Love Bert Tracey <tctheaussie@...> wrote:

Hi Berttc is my inials.. Tracey Curtis, and yes I'mAustralian. From Melbourne, but now living in theUSA. Moved here in 1998 following my marriage to anAmerican (2nd marriage). le is anAmerican/Aussie! Whereabouts are you in Aus? Great to meet a fellowAussie!!!Thanks for your wishes - have a great Xmas too! Hopeits a warm one (we're currently below freezing!) Butat least we don't get snow!Tracey--- bert lehane <bert_lehane@...> wrote:> Dear Tracey,> > Just wondering why you have tc the aussie on your> address? Are you Australian by any chance? By the> way it's lovely to meet you and have a wonderful> xmas.> > Bert and Bridget from Aus> > Tracey <tctheaussie@...>

wrote:> ,> > Its not state funded - its Aetna and I'm on an EPO. > I> didn't think they favoured out of state (unless you> were on vacation) - that you had to stick in state -> but then again I haven't really followed up fully on> this, just exploring options. I have read about a> hospital in TX and have also been reading on here> about the one in UT. I want to be prepared, and> I'll> do whatever it takes to get the best I can for our> little angel.> > Tracey> > --- <christinehrph@...>> wrote:> > > I think most insurance compaines HAVE to pay for> 2nd> > opinons reguardless the state, unless it is a> state> > funded insurance. I am not sure> > > > I will write more later> > Good luck> > > > Amy

on <_amos@...> wrote:> > Tracey,> > I got my son on disablity which then automatically> > they qualify for medicaid. You will probably be> > able> > to get your little one on disability which will> help> > out some. just a thought for you since her> > condition> > is congenital. Well i need to go just thought I> > would> > let you know about that. And do seek other> opinions> > because it is better to have two opinions than one> > and> > you could end up doing the wrong treatment for> your> > babe.> > Love, > > Amy and Jaeden> > P.S. Happy Holidays!!> > --- Tracey <tctheaussie@...> wrote:> > > > > > > > Amy,> > > > > > Hi... thanks for replying to me. >

> > > > > When I was first alerted to le's> condition> > by> > > the attending pediatrian at the hospital, he was> > > very> > > stern, serious but not forthcoming about what> this> > > condition actually meant. You can imagine how> it> > > made> > > us feel as new parents! My sons were in the> room> > > too,> > > as was my mum, and we were all looking at each> > other> > > saying well.. what does this mean? Is she> > disabled,> > > will she be able to walk - he seemed in a hurry> to> > > continue his rounds, and I was left with such an> > > awful> > > feeling in my stomach.> > > From that point I started looking up the> > condition,> > > and found it hard to find stuff

related to> > pediatric> > > congenital... until I realised it was termed> > > 'infantile' scoliosis!!!> > > I see so many serious cases depicted, and my> > hearts> > > just break for these darling children. > > > > > > At this point, her curve is due to a wedge> shaped> > > misformed vertabra, which is in the lumbar> region> > -> > > below her ribcage. All organs are working> > properly> > > -> > > renal ultrasounds came back clear. The MRI will> > be> > > another milestone, but I'm sure I wont get the> > > results> > > until we see the ortho again, which means a wait> > > until> > > March 25 - but the mri is Jan 5. Hopefully> there> > > will> > > be some form of MD there

that will be able to> give> > > me> > > an idea, I hate the waiting game.> > > > > > Anyway, I know I have a few years to wait before> > we> > > know for certain the direction her scoliosis is> > > taking. Until then, a lot of positive vibes,> > > praying,> > > and waiting.> > > > > > In the interim its a fight with the insurance> co,> > as> > > they keep asking for referrals from her PCP each> > > time> > > we see the ortho, denying payment initially...> its> > a> > > pain in the butt, as she didnt have a PCP at> > birth,> > > and the pedi at hospital did all referrals. Its> a> > > real pain in the *ss. Hopefully if further> > > treatment> > > is required they won't

be so difficult. Time> will> > > tell. > > > > > > I found a hospital in Plano TX that specializes> in> > > infantile scoliosis care - during my research on> > the> > > net. I'm curious how the insurance would react> > > should> > > I want to seek 2nd opinons etc., out of state? > > > Anyone> > > encounter this at all?> > > > > > Well, better go, its late!> > > > > > Good nite all!> > > > > > Tracey> > > --- Amy on <_amos@...> wrote:> > > > > > > > > > > Tracey,> > > > I found out my son had scolosis when he was 6> > > months> > > > old after his open heart surgery. And I was> > also> > > >

uninformed about this condition. I saw 2> > > different> > > > ortho's which only 1 of them wanted to do> > surgery> > > > and> > > > in the mean time they put him in a TLSO brace> > that> > > > did> > > > not do any good. And he was too small for> > > surgery. > > > > Until I found and she told me to get> him> > > in> > > > a> > > > cast ASAP and we did. And it has been> wonderful> > > to> > > > get treatment without surgery. Yes you do> have> > a> > > > right to worry. It is a very serious> condition> > > that> > > > can lead to breathing problems and sometimes> > > > crushing> > > > of the lungs if not treated

early. The best> > > > treatment> > > > is early treatment and not later. I waited> and> > > now> > > > it> > > > is going to take that much longer to fix my> > son's> > > > curve. He is right now without cast at 66> > degrees> > > > with cast is at 52 degrees. So as you can see> > > this> > > > is> > > > an improvement. You can feel free to email me> > > > personally or call me. I live in Colorado my> > > number> > > > is 970-308-2691 call anytime if you have> > > questions.> > > > > > > > Amy and Jaeden> > > > --- Tracey <tctheaussie@...> wrote:> > > > > > > > > Hello everyone,> > > > >

> > > > > My name is Tracey, and I have just joined> this> > > > > group. > > > > > We have a 5mth old baby girl named> le,> > > who> > > > > was> > > > > diagnosed at 3 days of age with congenital> > > > > scoliosis. > > > > > It was a fluke this was detected, as they> were> > > > > actually taking an x-ray of her abdomen as> > they> > > > > suspected a herniated umbilical cord (this> > > proved> > > > to> > > > > not be the case, she just had excess skin> like> > > an> > > > > oversized 'outtie', which may be surgically> > > > > corrected> > > > > later on.> > > > > > > > > > We have been referred to an

pediatric> > orthopedic> > > > > surgeon. She has been seen twice, had an> > > > additional> > > > > set of x-ray's done, renal ultrasounds and> > will> > > > have> > > > > an MRI under sedation in January. Her next> > > follow> > > > up> > > > > is in March. Her ultrasounds were clear.> > > > > > > > > > I'm not very cluey on the subject, but have> > been> > > > > trying to learn as much as I can through> > > research.> > > > > > > > > So> > > > > far, she doesnt seem to have most of the> > outward> > > > > signs> > > > > that have been depicted on various sites,> but> > I> > > > > realise it is very

early days. Her> curvature> > is> > > > > lower> > > > > (lumbar??) and I believe the surgeon said> 33%> > > and> > > > > had> > > > > not progressed at this stage. He advised he> > > > > considered her case 'moderate'. I haven't> > asked> > > > > many> > > > > questions as yet - basically due to my own> > lack> > > of> > > > > knowledge, and now the more I read, the more> > > > > questions> > > > > I have. > > > > > She has one vertabrae that has not formed> > > > correctly> > > > > -> > > > > and is like a 'wedge' shape, and this is> > causing> > > > the> > > > > curvature.

> > > > > For now I am of course concerned, my husband> > > > > believes> > > > > that she will be fine, and is comforting me> > > > telling> > > > > me> > > > > I am worrying unnecessarily. I appreciate> his> > > > > comfort> > > > > of course, but I would like to be> forewarned,> > so> > > > if> > > > > necessary I have options open to me, second> > > > > opinion's> > > > > and the knowledge of where to go for the> best> > > > care.> > > > > > > > > > I did read about 'extraction' of wedge> > > vertabrae,> > > > > but> > > > > also read this was particulary risky. Its> > > > certainly> > >

> > not all good news out there as regards> > treatment> > > -> > > > > at> > > > > least from what I have read so far.> > > > > > > > > > We have 2 other children, Ian (17) and Chris> > > (15)> > > > > from> > > > > my first marriage - Yes, le was a> > suprise> > > > > package - our little miracle baby girl, we> had> > > > > === message truncated ===> > > > > > > > > > __________________________________ > > Do you ? > > The all-new My - Get yours free! > > http://my. > > > > > > > >

SponsorADVERTISEMENT> > > > > > ---------------------------------> >

Report post · December 21, 2004

>>actually, I have seen a number of references to induction and autism,

>>there

seems to be a lot on the net about it.<<

Inevitably, amongst any group of people, there are going to be some who were

induced, some who were premature births etc etc. So when someone asks a

question about it, those with that experience tend to put their hands up, as

it were; but you don't hear from those to whom it is not relevant - although

that may be, and probably is, the majority.

My son (with AS) was not induced, and was full-term. He did not have a

difficult birth.

My husband (undx'd AS) was late, was not induced and as far as I know did

not have a difficult birth (he was born at home).

in England

Report post · December 22, 2004

Neither one of my children were induced, but I had difficult labors, so I had pitocin with both. is NT, but she didn't have to be put on oxygen and taken to NICU like Cameron did. Both were full term.

Anne

-- Re: new member

>>actually, I have seen a number of references to induction and autism, >>thereseems to be a lot on the net about it.<<Inevitably, amongst any group of people, there are going to be some who were induced, some who were premature births etc etc. So when someone asks a question about it, those with that experience tend to put their hands up, as it were; but you don't hear from those to whom it is not relevant - although that may be, and probably is, the majority.My son (with AS) was not induced, and was full-term. He did not have a difficult birth.My husband (undx'd AS) was late, was not induced and as far as I know did not have a difficult birth (he was born at home). in England

Report post · December 22, 2004

I have had 5 kids and one induction, the one induction is my ds who is

presumed to have ASD. That really doesnt prove anything though. Here is some

excerpts of things I have since found on the web:

At the 2001 APPPAH conference, Dr. Mehl-Madrona explained a presumed

mechanism for the pitocin/epidural/autism connection. Because the newborn

neurological system does not yet have the protective myelin layers around the

brain and nerves, they are inflamed by the bupivicaine used in epidural

anesthesia; it destabilizes the membranes of the developing brain.. When

pitocin is also used (either for induction or autism), this results in greater

exposure to the oxytocin family than would occur in a normal birth. Because

of the nerve inflammation, the nerves develop an adverse reaction to the high

levels of oxytocin . . . sort of an allergic reaction. Later in life, when

the child responds to social situations by the normal production of oxytocin,

this serves as a trigger for the allergic reaction to oxytocin, and the child

develops an adverse response to social situations.

http://www.gentlebirth.org/archives/brtrauma.html#Autism

Tinbergen, N., & Tinbergen, A. (1983). Autistic children. London: and

Unwin: " Mrs. Hattori evaluated the risks of becoming autistic according to

the place of birth. She found that children born in a certain hospital were

significantly more at risk of becoming autistic. In that particular hospital,

the routine was to induce labor a week before the expected date of delivery

and to use a complex mixture of sedatives, anesthesia agents and analgesics

during labor. "

http://www.gentlebirth.org/archives/brtrauma.html#Autism

The researchers report, " Compared with control subjects, cases had

significantly older parents and were more likely to be firstborn. Case mothers

had greater frequencies of threatened abortion, epidural caudal anesthesia

use, labor induction, and a labor duration of less than one hour. Cases were

more likely to have experienced fetal distress, been delivered by an elective

or emergency cesarean section, and had an Apgar score of less than 6 at one

minute [after birth]. "

http://www.news-medical.net/?id=2404

According to o Caldreyo-Barcia, MD, former president of the

International Federation of Obstetricians and Gynecologists and an eminent

researcher into the effects of obstetrical interventions, Pitocin is the most

abused drug in the world today. "

“The World Health Organization deplores routinely using Pitocin. The

Physician’s Desk Reference says that Pitocin should be used only when

medically necessary.”

“Pitocin can cause increased pain, fetal distress, neonatal jaundice, and

retained placenta; and recent research suggests that exposure to Pitocin may

be a factor in causing autism.”

Hollander of Mount Sinai Medical Center in New York, for example, links

autistic children with Pitocin-induced labors.

“In 1978, the FDA advisory committee removed its approval of Pitocin for the

elective induction of labor. (The drug has never been approved by the FDA for

the use of augmenting labor.) The current Physician’s Desk Reference clearly

states that ‘Pitocin is not indicated for elective induction of labor’.” [2]

“Augmenting labor, often confused with induction, is a slightly different

process, used to help or speed up a labor that began on its own.” “A basic

fear of the natural process of childbirth has led, over many centuries, to a

cultural warping of childbirth. Justifiable fear about the possible death of

a baby or mother in childbirth, combined with beliefs in magic, rituals,

drugs, herbal remedies, and much later, technology [technology being viewed on

the same level as blood letting], has led to the use of a whole host of

‘cures’ for labors that didn’t seem to start ‘on time’.” [2]

http://www.halexandria.org/dward446.htm

Oxytocin and Vasopressin in Autism

Oxytocin is produced through the influence of the cholecystokinin-A (CCKA)

receptor, which requires its substrate, cholecystokinin, to be sulfated (see

the free sulfate theory of autism). If there is insufficient ability to

sulfate compounds (a finding in some autistic people), the receptor will not

work well, and many CCKA mediated functions will be afffected.

There is an argument that pitocin (oxytocin) might cause some cases of autism

since so many mothers of autistic children had to have pitocin to induce

labor. Others have suggested that the association was more likely caused by

the mother/childunit having sulfation problems which made it difficult for

mom's oxytocin to be produced in sufficient quantity to move labor along,

necessitating a jumpstart with exogenous oxytocin (pitocin). The theory is

that mothers with sulfation problems would have a higher likelihood for

delayed or desultory labor.

A literature is developing to support a role for oxytocin in autism 4.

Coexisting with oxytocin or vasopressin in the cell bodies and nerve terminals

of the hypothalamic-neurohypophysial system are smaller amounts of other

peptides 5. For a number of these ''copeptides'' there is strong evidence of

corelease with the major magnocellular hormones. The effects on secretion of

oxytocin and vasopressin of three copeptides, dynorphin, cholecystokinin

(CCK), and corticotropin releasing hormone (CRH), has been studied. Dynorphin

is coreleased with vasopressin from neural lobe nerve terminals and acts on

neural lobe kappa-opiate receptors to inhibit the electrically stimulated

secretion of oxytocin. Naloxone augments oxytocin release from the neural lobe

in a manner directly proportional to the amount of vasopressin (and presumably

dynorphin) released.

Cholecystokinin, coreleased with oxytocin by neural lobe (NL) terminals, has

been shown to have high-affinity receptors located in the NL and to stimulate

secretion of both oxytocin and vasopressin. CCK's secretagogue effect is

independent of electrical stimulation and extracellular Ca2+ and is blocked by

an inhibitor of protein kinase C.

CRH, coreleased with oxytocin from the neural lobe, has receptors in the

intermediate lobe of the pituitary, but not in the neural lobe itself. CRH

stimulates the secretion of oxytocin and vasopressin from combined

neurointermediate lobes but not from isolated neural lobes. Intermediate lobe

peptides, alpha and gamma melanocyte stimulating hormone, induces secretion of

oxytocin and vasopressin from isolated neural lobes. Their effect is, like

that of CCK, independent of electrical stimulation and extracellular Ca2+ and

is blocked by an inhibitor of protein kinase C.

Among the CRH-producing parvocellular neurons of the paraventricular nucleus,

in the normal rat, approximately half also produce and store vasopressin.

After removal of glucocorticoid influence by adrenalectomy, virtually all of

the CRH neurons contain vasopressin.

The two subtypes of CRH neurosecretory cells found in the normal rat possess

different topographical distributions in the paraventricular nucleus,

suggesting the possibility of differential innervation. Stress selectively

activates the vasopressin containing subpopulation of CRH neurons, indicating

that there are separate channels of regulatory input controlling the two

components of the parvocellular CRH neurosecretory system.

The presence of opioid peptides and opiate receptors in the

hypothalamo-neurohypophysial system, as well as the inhibitory effects of

enkephalins and beta-endorphin on release of oxytocin and vasopressin has been

well documented 6. Opioid peptides inhibit oxytocin release and thereby

promote the preferential secretion of vasopressin when it is of functional

importance to maintain homeostasis during dehydration and hemorrhage. Both

neuromodulators and a neurohormones co-exist in the same neuron, as

demonstrated for vasopressin with dynorphin or leucine-enkephalin, which

serves to regulate the differential release of two biologically different, yet

evolutionarily-related, neurohormones, e.g. oxytocin and vasopressin, from the

same neuroendocrine system.

http://www.healing-arts.org/children/autism-overview.htm#Oxytocin%20and%20Vasopr\

essin%20in%20Autism

D. Marie Ralstin-

University of Oregon

Graduate Teaching Fellow, Department of Sociology

Native American Event Coordinator, Office of Admissions

717 PLC Hall

Eugene, Oregon 97403

541-346-5071

dralstin@...

d.ralstin@...

http://gladstone.uoregon.edu/~dralstin/

Ending a sentence with a preposition is something up with which we should not

put. - Winston Churchill

When a well-packaged web of lies has been sold gradually to the masses over

generations, the truth will seem utterly preposterous and its speaker a raving

lunatic. - Dresden

Report post · December 22, 2004

I've had 2 kids, both not induced. Unlike his big sis, who was born

before anyone in OK had heard of Lamaze , Louie was a totally natural

childbirth. No drugs of any kind during my pregnancy and during the

birth, no forceps, no episiotomy. And no problems, either! Took me

only 8 hours, a good day's work.

Annie, who loves ya annie@...

--

Every person is responsible for all the good within the scope of his

abilities, and for no more, and none can tell whose sphere is the

largest. Gail Hamilton (1833-1896) - Humorist

Report post · December 23, 2004

Check out the files section...there's a ton of great info there! We

have a lot of great members with excellent resources, and many are

posted.

>>> KLaschke@... 12/23/2004 1:34:32 PM >>>

Hello All:

I am a dietitian of 5 years but new to bariatric nutrition. I work in

Portland, OR. The hospital that I am working for recently opened an

obesity

institute which will initially be a compliment to a bariatric surgery

program (we do both gastric banding and roux en Y laparoscopically)

and

eventually will offer non-surgical weight loss programs. There has

been

dietitian involvement in the surgery program for several years but with

the

opening of the institute we are aiming to develop a more comprehensive

program and so I am in the process of developing new education

materials and

protocols. I am specifically looking for help or information on

vitamin and

mineral supplements. Is anyone suggesting specific products?

specific

amounts of anything? Or just recommending MVI, Ca, B12 and iron? I

would

appreciate if you mention which surgery you are referring to in your

responses! I would also love to hear from any of you on good

research

articles or resources relating to any bariatric topic and anyone

willing to

share materials they use, I would greatly appreciate your input.

Thank you!!

Laschkewitsch RD

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Report post · January 11, 2005

Joy, I do hear California is getting tons of rain...

I'm from KS and we've had a cold winter so far. I've had to cancel some

activities. I have had an electric chair to use out and about for about 2 years

now. I'm not sure how it does in snow and ice. It's a Jazzy Lite. I'm a

little concerned about being able to go up inclines in this thing if it's icey.

About the acitivity in this group.. usually I am one of the talkitive ones but

some of these disabled groups, I can't keep up with!!! That's great that

people post a lot.

Joan

Joy <j0yeuxx@...> wrote:

Hi Joan- yes this list is pretty active, although it has slowed down a bit from

when I first joined. I'm guilty because I don't post much!

I'm from Southern California where it's usually sunny but has had some dreadful

rain for the past few days! Who would believe it?? hehe

Sunny today though so I'm ready to get out and go to work!

Hope your day is wonderful!!!

Joanie Marie wrote:

Thanks Joy.. LOL about you being late.. but thank you .. it's hard for me to

keep up with all the posts here. It's great that there is activity on this

group!!!

Where are you from Joy? I'm from KS.

Joan

Joy wrote:

ok I'm really late, but welcome to the group!

Joan Newman wrote: