RE: Digest Number 308

[Guest guest]

Here's another " me too " . I didn't pass out, but do remember the tilt table

making me woozy. And my legs were so weak! My cheap shoes were hurting my

feet and I didn't tell anyone, so it was a double challenge. A hospital

pal who was also " learning to walk again " and I had fun using wheelchairs

with the footrests up. We'd push with our feet like a baby in a walker,

while we worked up our strength to walk more. We actually raced those

things down the hospital corridor.

At 02:30 PM 5/31/03 -0400, you wrote:

> Jan, You made me remember another thing. & & they told me they had

>taken her to get a coke as she had almost fainted when I did. & being

>pushed to just do one more step while holding on to the parallel bars. &

>stood me on my feet. (Another funny memory!) Joyce (Atlanta)

>

[Guest guest]

Didn't have the prism glasses but have some vivid memories of the Stryker frame! That was the most uncomfortable thing for 3 weeks! Once I was found on it wrong & it came out that 2 nursing assistants had log rolled me during the night to turn me as I had asked to be repositioned (drugged of course!). What a stink the next morning. The head nurse came down & accused me of doing it myself (yeah, right. Strapped down with 3 straps. I doubt it!). They finally came up with a solution but spun me too many times & I got very sick. Felt like I'd been on a carnival ride. Then the doc came in to see me. He was all smiles (gorgeous I might add). As he walked in he said, "How's my girl today?" and I burst into tears. The student nurse with me filled him in & he hit the roof. I could hear him yelling at her down at the nurses station! He told her to never do that again or to come into my room again. And she didn't!

Also on that frame I used to work the lower strap up & get it where I could dangle my right leg off & swing it back & forth. Sometimes I'd get caught & they'd lower the strap thinking it would stop me. NOT!

Have a good day & many smiles.

Joyce (Atlanta)

[Guest guest]

Most of the nurses learned to turn my Stryker frame pretty quickly, but one

old nurse had short arms and a big bust (not to mention the dentures she

clicked constantly), and she had the hardest time. Sure didn't feel too

good when she had me stuck halfway around and gravity was doing its best to

make me slide out between the top and bottom beds. I once turned on my

side (oh, heavens!) while asleep, and a nurse woke me (I think this night

nurse was calling me ) asking whether I was supposed to be on my back

or on my stomach.

This frame also had a bar that went right across my legs, just above the

knees, so that I couldn't bend my knees. Trouble was, it hurt to lie on my

back with legs straight (foreshadowing flatback?!!) I learned 30 years

later, when reading my surgery report, that the surgeons had had great

difficulty closing the fascia at the caudad (tail) end of the incision. So

they had tried a " relaxing " incision, and when that didn't work they just

went ahead and closed the skin. No wonder my lower back hurt so much! I

thought that was the lower end of the rod, but now that I know my anatomy a

bit better I realize the rod doesn't extend down that far.

So, anyway, at first I was able to get the nurses to leave the frame open,

so that stupid bar wasn't across my legs and I could bend them and use them

to relieve some of the pressure on my sore sacral area. Then they were

told it was bad for the frame to leave it open. So after the lights were

out I'd turn my legs just enough to get my knees free of the bar and pull

them up.

Ah, the joys of Memory Lane.

At 08:14 AM 6/6/03 -0400, you wrote:

> Didn't have the prism glasses but have some vivid memories of the

Stryker frame! That was the most uncomfortable thing for 3 weeks! Once I

was found on it wrong & it came out that 2 nursing assistants had log

rolled me during the night to turn me as I had asked to be repositioned

(drugged of course!). What a stink the next morning. The head nurse came

down & accused me of doing it myself (yeah, right. Strapped down with 3

straps. I doubt it!). They finally came up with a solution but spun me too

many times & I got very sick. Felt like I'd been on a carnival ride. Then

the doc came in to see me. He was all smiles (gorgeous I might add). As he

walked in he said, " How's my girl today? " and I burst into tears. The

student nurse with me filled him in & he hit the roof. I could hear him

yelling at her down at the nurses station! He told her to never do that

again or to come into my room again. And she didn't!

Also on that frame I used to work the lower strap up & get it where I could

dangle my right leg off & swing it back & forth. Sometimes I'd get caught &

they'd lower the strap thinking it would stop me. NOT!

Have a good day & many smiles.

Joyce (Atlanta)

[Guest guest]

Also did not pass out, but thought gravity was going to pull me down through the floor. Crutches for stabilization for about 6 weeks were absolutely klutzy. And it took almost a year for my ankles to stop swelling enormously at the end of the day.

I also remember having been in the turnbuckle Risser jacket turned to the right, and when it came off I was still turned to the right for a while but felt absolutely straight.

Can't imagine what it would take to recover from something like that at an older age. No wonder they pushed surgery by telling me they couldn't do it after about age 18 or so. I don't think they started doing surgery on the adults until the instrumentation became standard and the length of time in bed was reduced.

Sherry in NH

In a message dated 6/5/2003 11:57:14 PM Eastern Daylight Time, sharon.green18@... writes:

Here's another "me too". I didn't pass out, but do remember the tilt table

making me woozy. And my legs were so weak! My cheap shoes were hurting my

feet and I didn't tell anyone, so it was a double challenge. A hospital

pal who was also "learning to walk again" and I had fun using wheelchairs

with the footrests up. We'd push with our feet like a baby in a walker,

while we worked up our strength to walk more. We actually raced those

things down the hospital corridor.

[Guest guest]

So that's what a "Stryker frame" is . . . . funny, the everyday orthopedic usages that sometimes escape one's attention!

Is this [at least one version of] what they called a "Circa-Electra" or "Circa-Electric" bed when I was a Walter inpatient in June1962? (I think I wrote 1961 by mistake in other posts.)

It sounds like the contraption I was on (or in) for several weeks after my first spinal fusion. The idea was to rotate the patient every few hours to prevent "decubitus ulcers," i.e., "bedsores." You would be lying on one mattress, and they would clamp another one over you, so that you became the sandwich filling. Your body bisected a large circle formed by curved, stainless steel rods. The nurse would press a button, and you would slowly rotate 180 degrees, from supine to prone, ending up face down on the mattress that had been on top of you at the beginning of the cycle. I am not sure how they flipped you in the other direction when it was time to switch to lying on your back--probably the same way, with you lying underneath the "overhead" mattress on your stomach instead of on your back this time . . . .

They did this every 2 hours in the daytime and every 4 hours at night, or some such schedule. Something tells me that I -- like so many other kids in that era -- was inadequately medicated for post-op pain. (Apparently they had not yet discovered the pediatric CNS?) At any rate, the point in the cycle during which I was in the "standing upright" position must have shifted my weight onto my feet, for a brief moment that felt like an hour. The portion of my back that had been fused, T4 or T5-T12, was not much of a problem, but oh, that left "hip" --posterior iliac crest--from where they had removed the bone used for the graft!!!!! & ***% & **

On one occasion, my parents came in from the waiting room right after I was "flipped." They told me that they could hear me screaming all the way at the other end of a long hallway.

Until I read this last letter from you, and began to remember this whole episode more fully, I did not realize that I had experienced pain of that quality at any time in my life before February 19, 1982 (when I was in the labor room, heading right on up toward 10 cm.)

In conclusion, my heartfelt thanks to whichever feisty spinal-surgery survivor proposed the perfect motto for this group as we share our memoirs and miseries:

S C O L I O S I S S U C K S ! ! ! ! !

Re: Digest Number 308

Most of the nurses learned to turn my Stryker frame pretty quickly, but oneold nurse had short arms and a big bust (not to mention the dentures sheclicked constantly), and she had the hardest time. Sure didn't feel toogood when she had me stuck halfway around and gravity was doing its best tomake me slide out between the top and bottom beds. I once turned on myside (oh, heavens!) while asleep, and a nurse woke me (I think this nightnurse was calling me ) asking whether I was supposed to be on my backor on my stomach.This frame also had a bar that went right across my legs, just above theknees, so that I couldn't bend my knees. Trouble was, it hurt to lie on myback with legs straight (foreshadowing flatback?!!) I learned 30 yearslater, when reading my surgery report, that the surgeons had had greatdifficulty closing the fascia at the caudad (tail) end of the incision. Sothey had tried a "relaxing" incision, and when that didn't work they justwent ahead and closed the skin. No wonder my lower back hurt so much! Ithought that was the lower end of the rod, but now that I know my anatomy abit better I realize the rod doesn't extend down that far.So, anyway, at first I was able to get the nurses to leave the frame open,so that stupid bar wasn't across my legs and I could bend them and use themto relieve some of the pressure on my sore sacral area. Then they weretold it was bad for the frame to leave it open. So after the lights wereout I'd turn my legs just enough to get my knees free of the bar and pullthem up. Ah, the joys of Memory Lane.At 08:14 AM 6/6/03 -0400, you wrote:> Didn't have the prism glasses but have some vivid memories of theStryker frame! That was the most uncomfortable thing for 3 weeks! Once Iwas found on it wrong & it came out that 2 nursing assistants had logrolled me during the night to turn me as I had asked to be repositioned(drugged of course!). What a stink the next morning. The head nurse camedown & accused me of doing it myself (yeah, right. Strapped down with 3straps. I doubt it!). They finally came up with a solution but spun me toomany times & I got very sick. Felt like I'd been on a carnival ride. Thenthe doc came in to see me. He was all smiles (gorgeous I might add). As hewalked in he said, "How's my girl today?" and I burst into tears. Thestudent nurse with me filled him in & he hit the roof. I could hear himyelling at her down at the nurses station! He told her to never do thatagain or to come into my room again. And she didn't!Also on that frame I used to work the lower strap up & get it where I coulddangle my right leg off & swing it back & forth. Sometimes I'd get caught & they'd lower the strap thinking it would stop me. NOT!Have a good day & many smiles.Joyce (Atlanta)Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

Actually I do know one adult who had a fusion for scoliosis in 1974. My

father. He was 47 at the time. He got 2 Harrington rods, and was in bed

in plaster for about 3 months.

Just recently I asked him if he can swing his legs back. Apparently not.

Looks like he has the hip flexion contractures, as well as exaggerated

thoracic kyphosis. I said, " Oh, my gosh, it looks like you DO have

flatback " . He's been diagnosed with spinal stenosis, which makes walking

somewhat difficult/painful. For years we thought the kyphosis thing was

just from keeping several pillows under his head while flat on his back in

the cast. (The doctor made his start at the collar bone and extended it to

both knees so he wouldn't get up and walk around. So he was stuck on his

back the whole time!) He thought the freaking doctor was God, too. Oh,

well, I guess he's in heaven by now. At 76 Daddy's not exactly a candidate

for revision.

At 10:18 PM 6/6/03 EDT, you wrote:

> I don't think they started doing surgery on the adults until the

>instrumentation became standard and the length of time in bed was reduced.

> Sherry in NH

[Guest guest]

Hey, you're welcome. ;^)

So you had the end-to-end rotating frame. Mine was side-to-side, and not

electric, but my dad got the end-to-end one, a couple of years later. Mine

was new at Shriners, too. The one the girl before me had looked way less

comfortable.

I saw my dad in the electric one, and thought it must be pretty

uncomfortable to be spun that way, and made to stand upright in the process

(though I kind of envied it's " cool " factor). He had a horrendous time in

post-op. His doctor did admit it was the closest he'd come to losing a

patient during surgery. He had some bizarre hallucinations including one

where the frame was the machine they use to lower the casket into the

grave. He also thought he got a glimpse of the afterlife. People he knew

were long dead smiling at him and saying, in thoughts, not words, " So you

thought you were unique! " Which I guess translates as " We understand " .

Then again, he was pretty drugged up, and recalled a series of shots which

seemed to come one after another; every time he woke up he'd get another

jab in the arm, until he grabbed the nurse's hand and said, " Enough! " Kind

of makes my experience of waking up every 3 1/2 hours and crying for half

an hour 'til they could give me my next shot seem tame.

At 08:11 AM 6/7/03 -0500, you wrote:

> So that's what a " Stryker frame " is . . . . funny, the everyday

>orthopedic usages that sometimes escape one's attention! June1962? (I

>think I wrote 1961 by mistake in other posts.) I am not sure how

>they flipped you in the other direction when it was time to switch to

>lying on your back--probably the same way, with you lying underneath the

> " overhead " mattress on your stomach instead of on your back this time . .

>. . The portion of my back that had been fused, T4 or T5-T12, was

>not much of a problem, but oh, that left " hip " --posterior iliac

>crest--from where they had removed the bone used for the & & Until

>I read this last letter from you, and began to remember this whole episode

>more fully, I did not realize that I had experienced pain of that quality

>at any time in my life before February 19, 1982 (when I was in the labor

>room, heading right on up toward 10 cm.) share our memoirs and

>miseries: ! ! ! ! !

> Re: Digest Number 308

>Most of the nurses learned to turn my Stryker frame pretty quickly, but

one

>old nurse had short arms and a big bust (not to mention the dentures she

> Sure didn't feel too

>good when she had me stuck halfway around and gravity was doing its

best to

> I once turned on my

>side (oh, heavens!) while asleep, and a nurse woke me (I think this night

>nurse was calling me ) asking whether I was supposed to be on my

back

>or on my stomach.

>

>This frame also had a bar that went right across my legs, just above the

> Trouble was, it hurt to lie on my

> I learned 30 years

>later, when reading my surgery report, that the surgeons had had great

> So

>they had tried a " relaxing " incision, and when that didn't work they just

> I

>thought that was the lower end of the rod, but now that I know my

anatomy a

>bit better I realize the rod doesn't extend down that far.

>

>So, anyway, at first I was able to get the nurses to leave the frame open,

>so that stupid bar wasn't across my legs and I could bend them and use

them

> Then they were

> So after the lights were

>out I'd turn my legs just enough to get my knees free of the bar and pull

>

>

>Ah, the joys of Memory Lane.

>

>At 08:14 AM 6/6/03 -0400, you wrote:

>> Didn't have the prism glasses but have some vivid memories of the

>Stryker frame! That was the most uncomfortable thing for 3 weeks! Once I

> & it came out that 2 nursing assistants had log

>rolled me during the night to turn me as I had asked to be repositioned

>(drugged of course!). What a stink the next morning. The head nurse came

> & accused me of doing it myself (yeah, right. Strapped down with 3

>straps. I doubt it!). They finally came up with a solution but spun me too

> & I got very sick. Felt like I'd been on a carnival ride. Then

> He was all smiles (gorgeous I might add). As he

>walked in he said, " How's my girl today? " and I burst into tears. The

> & he hit the roof. I could hear him

>yelling at her down at the nurses station! He told her to never do that

>again or to come into my room again. And she didn't!

> & get it where I could

> & & &

>they'd lower the strap thinking it would stop me. NOT!

> & many smiles.

>Joyce (Atlanta)

>

>

>

>

>Support for scoliosis-surgery veterans with Harrington Rod Malalignment

>Syndrome. Not medical advice. Group does not control ads or endorse any

>advertised products.

>

>

[Guest guest]

Are you sure?

Some scoliosis and even flatback revision surgeons do operate on

patients in their seventies .... (Not that I hope to be one of them.)

> > I don't think they started doing surgery on the adults until the

> >instrumentation became standard and the length of time in bed was

reduced.

> > Sherry in NH

[Guest guest]

Well, given his history of stroke, blood thinners, interstitial lung

disease, and a recent bout with prostate cancer, I suspect it would not be

recommended for him, even if he were game (which I strongly doubt). He

likes to say, " If I'd known I was gonna live this long, I would have taken

better care of myself! "

At 06:10 PM 6/9/03 -0000, you wrote:

> Are you sure?

>

> Some scoliosis and even flatback revision surgeons do operate on

> patients in their seventies .... (Not that I hope to be one of them.)

>

>

[Guest guest]

Thanks, .

I'm pretty sure Amit doesn't know most of that. He did know a girl by the

same name in Israel; he says it can be either a man's or wonan's name. But

his knowledge of Hebrew is more intuitive than intellectual. I had heard

the word " emet " for " truth " , so wouldn't be surprised by a connection.

Amit's mom, a true old " sabra " , said it means " good friend " , so I guess

that translates just as well " true friend " . He knows of one scriptural use

of the word, in one of the prophets (of course I've forgotten the

reference), where G-d refers to " the man who is My companion (amiti) " .

I do think it's a cool name. Of course, most everyone who reads it wants

to pronounce it " a-MITT " , or " AM-it " ...

:^S

Sharon

At 06:56 AM 6/10/03 -0000, you wrote:

> And I value your realness, Sharon.

In looking up the name Amit, I learned that this masculine name (like

the variant Amitai?) can mean " truth " as well as " friend. " I take it

this has both Hebrew and Aramaic roots. According to my dictionary

of Hebrew names, when you vary the man's name just slightly, from

Amit to Amitan, it comes to mean " true, faithful friend. "

Like other Hebrew names, Amit can also be feminine. I really love

this name. I see that when Amit becomes Amita, the meaning seems to

shift a little, from " friend " to " upright, honest " -- actually kind of

appropriate for all of us who are trying to get ourselves more

strucurally upright while speaking some hard truths to one another

concerning our experiences with spinal surgery.

For some reason all of this evoked the memory of a brief quotation

that touched me deeply at the time of my revision procedure. (My

apologies to more " secularly " inclined folk at this site--this is NOT

meant to be any kind of " religious " group, G-d forbid!) I can not

quote the relevant words in Hebrew but will give an approximate

English translation . . .

Some friends who are committed to regular Bible (Torah) study told me

they would be praying for me during surgery. They asked me to try and

focus on Tehillim, specifically Psalm 146 referring to the Lord

who " straightens those who are bent. "

(Come to think of it, how could I advocate anything BUT " straight

talk " at this list?)

[Guest guest]

Wow Robin,

What a trooper. I have had several mri's and have had to fight to stay still. That is so great!

Crista

[Guest guest]

Hi,

Just wanted to let you know had a follow up MRI today (it's been about

10 months) to see if we can more clearly determine whether or cord is

tethered or not. Results will be next week.

However, I do so try to " read " info from the techs comments - which I should

NOT do.

The tech came in and wondered if was positioned on the bed straight

because she saw a small curve in her spine.

OK - does that mean her curve is sooo small now that it looks like she's not

laying straight? Before it was considered a prominent curve and was really

obvious.

OR does that mean she didn't realize had scoliosis and what she called

a 'small curve' was really a glaring curve and she's the same or (G-d

forbid) gotten worse?

OH - why do I think about that casual comment over and over?????

Sigh.

BTW, is 6 and has now had 2 anesthetic-FREE MRI's - Texas Children's

is great - they give her earphones with Lilo and Stitch music and she's good

to go - she laid perfectly still (and wasn't asleep!) in that MRI machine

for 1.5 hours this morning - we are proud of her!!

Will let you know when we meet with the neurosurgeon next week.

Robin

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

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New here, child with lumbosacral scoliosis

Hi. My name is Connie, and my son is four. He was born with

multiple congenital birth defects, one being vertebral anomalies. He was

born missing the left half of his sacrum, and with a hemivertebrae between

L4 and L5. As he grew, and started standing and walking, he developed

scoliosis, a C curve in his lower lumbar spine. We have been monitoring it

since he was about 18 months old, and it has only progressed about 10-15

degrees, and some of that could be margin of error or the difference between

laying down and standing up for the xrays.

We recently saw another ortho for a second opinion, as our first had

mentioned that he wanted to fuse around the lower lumbar/sacral area

at some point to avoid problems from the hemivertebrae there. The second

ortho seemed to be more concerned by 's xrays, and felt that his lumbar

spine was collapsing into the space where the left side of the sacrum was

missing, and that was causing his scoliosis. He said he needed to get a 3D

CT scan to tell for sure, but the thought that the area needed to be

stabilized and that either fusion there or a titanium rib/rod from the ribs

to the pelvis would be options to discuss. We have since had the CT which

seems to confirm the doctors concerns, but I still haven't heard back from

him officially. I have received an email from another doctor who believes

that should have the lumbosacral fusion with the addition of his left

hip being screwed into his lumbar spine and fused also.

Has anyone here been through the lumbosacral fusion and know what it

entails? I have been in contact with the people dealing with the Titanium

Rib Project, so I have information on that already (my two best friends from

my sons support groups have children with these implants - what a wonderful

option for young kids whose thoracic scoliosis is causing breathing

difficulties!).

Connie

Mom to Sara 12, Nicky 6 (GI issues, megacolon), and 4

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed sacrum and pelvis, long segment levoscoliosis, extra left rib,

genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03),

hypoplastic left leg with clubfoot (repaired 5/01) and 4cm length

discrepancy - wears AFO and 3cm lift, SUA, GI reflux, DGE, mild swallowing

dysphagia, eating issues and the most beautiful smile ever)

conni60640@..., http://pages.ivillage.com/conni60640/

[Guest guest]

Hi Robin

I'm so glad that the MRI went well. Way to go for managing to

keep still (and not be scared) for so long. Lets hope that you get

the answers you need next week. Please keep us posted....

Jacki

> > Hi Crista. Thanks for the welcome, and for checking our site

out.

> IS

> > the perfect little boy, LOL. When he's behaving, anyway....

> >

> > We live in Southern New Jersey, right across from the PA/DE

border,

> so I have

> > access to the doctors in Philadelphia (CHOP, Shriners) and

Delaware

> (AI

> > duPont) near us.

> >

> >

> > Connie

> > Mom to Sara 12, Nicky 6 (GI issues, megacolon), and 4

> > (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal

> fistula

> > imperforate anus (repaired 5/00), single kidney, PDA (closed on

its

> own),

> > malformed sacrum and pelvis, mild long segment levoscoliosis,

extra

> left rib, genital

> > anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03),

> > hypoplastic left leg with clubfoot (repaired 5/01) and 4cm length

> discrepancy - wears

> > AFO and 3cm lift, SUA, GI reflux, DGE, mild swallowing dysphagia,

> eating issues

> > and the most beautiful smile ever)

> > conni60640@a..., http://pages.ivillage.com/conni60640/

>

>

>

>

_____________________________________________________________________

___

>

_____________________________________________________________________

___

>

> Message: 3

> Date: Thu, 2 Sep 2004 15:40:34 -0400

> From: " Gail M. Kimball " <gmkimball@f...>

> Subject: Re: New here, child with lumbosacral scoliosis

>

> Hi Connie and ,

> I am Gail, mom to who has Congenital Scoliosis, torticollis,

Klippel

> Feil Syndrome, VATER (vertebrae and renal - one kidney), minor

kyphosis,

> hemivertabrae, and fused ribs. I also have a 5 1/2 yo son,

who is

> ADHD with some minor ODD tendencies.

>

> I found 's site to be amazing!!

>

> Gail

>

> New here, child with lumbosacral

scoliosis

>

>

> Hi. My name is Connie, and my son is four. He was born

with

> multiple congenital birth defects, one being vertebral anomalies.

He was

> born missing the left half of his sacrum, and with a hemivertebrae

between

> L4 and L5. As he grew, and started standing and walking, he

developed

> scoliosis, a C curve in his lower lumbar spine. We have been

monitoring it

> since he was about 18 months old, and it has only progressed about

10-15

> degrees, and some of that could be margin of error or the

difference between

> laying down and standing up for the xrays.

>

> We recently saw another ortho for a second opinion, as our first

had

> mentioned that he wanted to fuse around the lower

lumbar/sacral area

> at some point to avoid problems from the hemivertebrae there. The

second

> ortho seemed to be more concerned by 's xrays, and felt that

his lumbar

> spine was collapsing into the space where the left side of the

sacrum was

> missing, and that was causing his scoliosis. He said he needed to

get a 3D

> CT scan to tell for sure, but the thought that the area needed to

be

> stabilized and that either fusion there or a titanium rib/rod from

the ribs

> to the pelvis would be options to discuss. We have since had the

CT which

> seems to confirm the doctors concerns, but I still haven't heard

back from

> him officially. I have received an email from another doctor who

believes

> that should have the lumbosacral fusion with the addition of

his left

> hip being screwed into his lumbar spine and fused also.

>

> Has anyone here been through the lumbosacral fusion and know

what it

> entails? I have been in contact with the people dealing with the

Titanium

> Rib Project, so I have information on that already (my two best

friends from

> my sons support groups have children with these implants - what a

wonderful

> option for young kids whose thoracic scoliosis is causing breathing

> difficulties!).

>

>

> Connie

> Mom to Sara 12, Nicky 6 (GI issues, megacolon), and 4

> (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00)

perineal fistula

> imperforate anus (repaired 5/00), single kidney, PDA (closed on

its own),

> malformed sacrum and pelvis, long segment levoscoliosis, extra

left rib,

> genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03),

> hypoplastic left leg with clubfoot (repaired 5/01) and 4cm length

> discrepancy - wears AFO and 3cm lift, SUA, GI reflux, DGE, mild

swallowing

> dysphagia, eating issues and the most beautiful smile ever)

> conni60640@a..., http://pages.ivillage.com/conni60640/

>

>

[Guest guest]

I've been reading the list for awhile before I started posting, I've noticed many comments on Senator Frist - He's such a stand up guy. Sorta like a comedian huh ? Well... just like comedians FRIST is BOO'd offstage quite often in Joint Congressional hearings, I've seen it and laughed. I personally make a call to his office every few days... then when he doesn't call back I call back over and over and over and over. As a US reg Lobbyist I can. It's not harrassment...it's a matter of him not returning phone calls. I've had a blast with Frist.. making a comedian of him. Instead of getting mad....he just makes me laugh because he's so pathetic. Those such as him I wish would live with my son for a week....wait...wait..... that would be child abuse if I left him with frist... I don't need the CPS and Frist in the middle of a big scandle....can't have that....wouldn't be prudent...... hahaha !

E. , Sr. Lil Mikey's daddy

U.S. Civil Rights Lobbyist, DC,CA,DoD

~~The Office Of Advocacy for Children with Disabilities (specializing in Autism...but we can handle anything)~~

E. , Sr. U.S. Civil Rights Lobbyist Peaceforkids2005@...

Specializing in Professional Educational Advocacy

But, We will look to help all

" We speak for those that can not, and with POWER"

ADVOCATING NATIONALLY IN PERSON AND BY TELECONFERENCE - Over 200 state advocates>From: EOHarm >Reply-EOHarm >EOHarm >Subject: Digest Number 308>Date: 20 Jun 2005 04:38:34 -0000>>There are 25 messages in this issue.>>Topics in this digest:>> 1. Re: AUTISM...CAN IT BE PREVENTED?> From: "redhead60707" <redhead60707@...>> 2. Re: "All Star" syndrome> From: "Tim Ziegeweid" <rdurano@...>> 3. Re: Re: OT: Of ProLife Concern dovetailing into Hg with our churches for a 1,2 punch!> From: "Tim Ziegeweid" <rdurano@...>> 4. Re: really??> From: Sylvia <sermeldan@...>> 5. Re: Re: Robuella 27??> From: "Kerbob" <robertbloch@...>> 6. Re: Re: What about current vaccines and current diagnosis rates?> From: barb beaudot <mnkygrl9@...>> 7. Re: OT: Recovery> From: barb beaudot <mnkygrl9@...>> 8. Re: "All Star" syndrome> From: "jopiker" <naa@...>> 9. Re: Re: Odds are against a Senator being elected President> From: and Jack Estepp <restepp@...>> 10. Re: Re: Robuella 27??> From: "Tim Ziegeweid" <rdurano@...>> 11. Re: Robuella 27??--Got another one for ya> From: " " <david@...>> 12. Re: "All Star" syndrome> From: "redhead60707" <redhead60707@...>> 13. The esteemed Dr. Alan is in the house> From: "schaferatsprynet" <schafer@...>> 14. Re: "All Star" syndrome> From: "redhead60707" <redhead60707@...>> 15. hand washing. Mr. Snow where are you now?? WAS RE: Re: Robuella 27??--Got another one for ya> From: " M. Webster" <jwebs94@...>> 16. Re: Re: Robuella 27??--Got another one for ya> From: karen beauvais <jesusnowworld@...>> 17. Re: hand washing. Mr. Snow where are you now?? WAS RE: Re: Robuella 27??--Got another one for ya> From: karen beauvais <jesusnowworld@...>> 18. RE: hand washing. Mr. Snow where are you now?? WAS RE: Re: Robuella 27??--Got another one for ya> From: " M. Webster" <jwebs94@...>> 19. RE: The Diva has a sugar daddy> From: karen beauvais <jesusnowworld@...>> 20. Re: The esteemed Dr. Alan is in the house-Dr > From: karen beauvais <jesusnowworld@...>> 21. Reply: anybody e-mail or write to Frist> From: "rbnkmdl" <DALE@...>> 22. Re: Reply: anybody e-mail or write to Frist> From: "addic4" <loribcolec@...>> 23. Re: Re: "Criminally Insane" Clear and present danger> From: Aasa <penas7ar@...>> 24. Re: Re: What about current vaccines and current diagnosis rates?> From: barb beaudot <mnkygrl9@...>> 25. Re: another case of mercury poisoning.> From: Aasa <penas7ar@...>>>>________________________________________________________________________>________________________________________________________________________>>Message: 1> Date: Mon, 20 Jun 2005 00:49:25 -0000> From: "redhead60707" <redhead60707@...>>Subject: Re: AUTISM...CAN IT BE PREVENTED?>>Yes,,by all means--send it!!! >>>> > > To find your station/time:> > >> > > http://www.montelshow.com/misc/where_2_watch.htm> > >> > > AUTISM...CAN IT BE PREVENTED?> > >> > > Autism is a developmental disorder typically appearing in a>child> > by> > > their third year. Heredity, or genetics, is considered one of>the> > > main causes for the disease, however no specific gene has been> > > linked to autism. Today, we'll meet parents of autistic children> > who> > > say there's another cause that has been kept in the dark:>mercury.> > > Since the 1920s, a small percentage of mercury has been added to> > > vaccines as a preservative. In the 80s and 90s, the number of> > > vaccines given to babies and children has increased - so has the> > > number of children diagnosed with autism. We'll meet Lyn and>Tommy,> > > two parents who agree with this theory. Their son, who has>autism,> > > became very sick when he was 15 months old. After a year of> > > struggling health, he began to detach from the world and>eventually> > > stopped talking. Lyn says that her son received 62.5 micrograms>of> > > mercury from all his vaccines - well above the 5 micrograms that> > was> > > considered to be toxic for a child his age and size. Their story>is> > > reviewed in a new book called, "Evidence of Harm" which studies>the> > > possible link between mercury and autism. We'll speak with the> > > author of this book, along with Congressman Dave Weldon, and the> > > chief science officer of the National Alliance for Autism>Research> > > about this possible link. Recently, mercury has been slowly and> > > quietly removed from many of the vaccines being given to>children.> > > So the question remains - will the removal of mercury from>vaccines> > > reduce the rate of autism in America?> > >> > >> > > Tommy & Lyn: Parents whose son began showing signs of autism>after> > a> > > relatively healthy start in life. They believe his autism was> > caused> > > by the high level of mercury received from multiple vaccines>given> > > to him as a baby.> > >> > > Will (on tape): Lyn and Tommy's older son who will talk about>his> > > little brother.> > >> > > Kirby: Author of, "Evidence Of Harm: Mercury in Vaccines>and> > > the Autism Epidemic: A Medical Controversy" used Lyn and Tommy's> > > story in his book about this medical debate.> > >> > > Dave Weldon, M.D.: Doctor and U.S. Representative who believes> > there> > > is a link between vaccines and neurodevelopment disorders. Has> > > introduced "the Mercury Ban Bill" in congress last year to>resolve> > > this issue.> > >> > > Lynne & Mike: Two of their four children have autism and Lynne>and> > > Mike believe that the presence of mercury in vaccines was the>cause.> > >> > > Barbara: Ate tuna fish daily when she was pregnant and now>believes> > > the level of mercury found in tuna fish caused her child's>autism.> > >> > > Andy Shih, M.D.: Chief science officer at The National Alliance>for> > > Autism Research who says there is no current evidence that>proves> > > mercury is a cause of Autism, but that more research needs to be> > > done.>>>>>________________________________________________________________________>________________________________________________________________________>>Message: 2> Date: Sun, 19 Jun 2005 19:48:10 -0500> From: "Tim Ziegeweid" <rdurano@...>>Subject: Re: "All Star" syndrome>>Amen Laurie!. We should be thankful to anybody and everybody who works to help publicize what has happened to our thimerosal-damaged children. Tim Z.> "All Star" syndrome>>> I've been trying to stay away from this topic, but it keeps bugging me and I> need to get this off my chest. I've been involved in advocacy for many years> and have to say that this situation is not unique to the autism community but is> still disburbing all the same. As parents we are always calling out for people> to help. We raise awareness, educate and try to enlist others to advance our> cause. But when someone actually steps up to the plate, and heaven forbid is> actually good at it, people eventually turn on them and question their motives.> I know that there are people who get involved out of some sort of need to seek> personal glory. Those individuals usually get found out early on and rarely> get the recognition and praise that they seem to need. Those whose motives> are pure and who work tirelessly at often great personal sacrifice get praised> and are often the ones who are the most uncomfortable with the recognition.> Why is it that after a person reaches a certain level of achievement we turn on> them?> Do people feel that if someone "makes a name" for themselves that this> diminishes other people's contributions? Everyone is needed and everyone> brings different skills and abilities with them. Everyone does what they can,> when they can.> I can tell you that a number of years ago when my son hit puberty things got> real ugly for a couple of years. It took everything I had just to get through each> day. Advocacy wasn't on my radar. All I could do was hope and pray that> others were out there fighting the fight. As 's book documents, many> were and I am forever thankful for them.> Now that things have improved quite a bit for my son, I'm back in the battle.> I use what I have to the best of my abilities. There are limits to what I can do> though still. For instance, anything involving long-distance travel is still not a> possibility for me. I'd love to be by 's side out front of the CDC or> marching on DC in the fall, but can tell you, that isn't going to happen.> I can certainly relate to Lujene's distaste for writing! I am the same way> (fooled ya didn't I!). The only thing I hate more is public speaking but find> myself actually doing that far too often these days. I have to get past my> dislike for these things so that I can contribute as much as I can from where I> am.> We are so close to finally winning this battle but we're not quite there yet.> How are we to get this thing over the top if we keep critizing the very people> who could break this all open.> We need to get behind and stay behind our "heros" whether they are parents,> doctors, scientists, politicians, writers, whatever.> RFK's motives are being questioned although his article is the one thing that> has moved this a giant step forward. He brings many talents to the table and> yes his "family name" is one of them. In Cda I can list off names of both the> good guys and the bad guys in this story and no one blinks an eye. But when> I sent RFK's article around, people stopped and took notice and believed> because his name is so big, even people up here know it. Does he want to> run for president some day? I don't know and frankly I don't care. If he can> break this wide open I will owe him my undying thanks.>> Laurie>>>>>>>---------------------------------------------------------------------------->