Re: Hi from Australia again!

August 10, 2006

Hi ,

<<s curve is a very stiff and rigid curve,...>>

How do you know this? Does he any medical condition

that prevents the spine from having ANY flexibility?

Is he a generally healthy child, with scoliosis as a

side condition?

I ask these questions because many parents have been

told their child's spine is rigid, when in reality it

is not. I know a mom (one of the many 's on

the list) who's 11 month old Liam was told he had a

very rigid spine, with a 100+ degree curve. There was

nothing they could do to improve the curve, just buy

time until spinal fusion surgery could be done.

brought Liam to Shriners in SLC and with the

FIRST cast, his curve was reduced to 50 degrees. A

rigid spine? I think not.

Please don't give up. There is hope for your .

I promise. If it isn't serial casting, there are

other things that can help without having to fuse at

an early age.

My best,

Carmell

mom to Kara, idiopathic scoliosis, Blake 15, GERD and Braydon 11, 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, single

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

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________________

August 10, 2006

have to agree with Carmell's email . First off DO NOT GIVE UP!! Do not

feel you have to sit and wait. I think we can all attest on this board that we

as parent's have to be as proactive as possible. I personally have been thrown

out of a hospital by security for fighting with Lexi's ortho!!!! LOL

i have the same question as carmell.......how do you know his spine is this

rigid? are there other medical issues going on with him? did they tell you it is

due to his age? as they get older the spine does lose some of its flexibility,

but there are things that can be done.

to your question about experiences with serial plaster casting. i can tell you

we were told when lexi was 4 months she had a slight curve. it wasn't until she

was a year old she was diagnosed with idiopathic scoli. she was placed in her

first cast in august of 2005 at 21 mo old. she had 2 consecutive casts and is

now in a tlso brace due to hand operations coming up and she cannot be in a cast

and have surgery with those on. we are having great success with our brace at

this time BUT without the early treatment and the early casting, i do not feel

braces would be an option now. that is all i can really say about our

experience.

i will emphasize again do not lose hope......READ READ READ on what you can

find and fight for your son. know that this board is such a great place with

great moms who have a ton of info and advice.

HANG IN THERE!!!!!

tracey ( lexi's mom )

Re: Hi from Australia again!

Hi ,

<<s curve is a very stiff and rigid curve,...>>

How do you know this? Does he any medical condition

that prevents the spine from having ANY flexibility?

Is he a generally healthy child, with scoliosis as a

side condition?

I ask these questions because many parents have been

told their child's spine is rigid, when in reality it

is not. I know a mom (one of the many 's on

the list) who's 11 month old Liam was told he had a

very rigid spine, with a 100+ degree curve. There was

nothing they could do to improve the curve, just buy

time until spinal fusion surgery could be done.

brought Liam to Shriners in SLC and with the

FIRST cast, his curve was reduced to 50 degrees. A

rigid spine? I think not.

Please don't give up. There is hope for your .

I promise. If it isn't serial casting, there are

other things that can help without having to fuse at

an early age.

My best,

Carmell

mom to Kara, idiopathic scoliosis, Blake 15, GERD and Braydon 11, 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, single

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

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________________

August 11, 2006

Hi ,

We were told that Cole had a rigid spine by Dr. Mehta herself! Cole was in his

first cast at 8 months and now we are waiting to get cast #. 6. Again, he went

from 40 degrees to 8 degrees with the casting thus far. We were actually told at

his last appt. that over the last year Cole's spine has become more flexable

with all the manipulation he has gone through. Another thing I have always been

told was that if the spine is rigid, the correction process may take longer, but

it will hold better.? Not sure the research behind that, but it makes sence.

Hang in there, you are on the right track. In regards to your question, < " Have

any of the childrens spines in this

group resolved yet, or are they still in the process of doing so?

Have any of you experienced early detection AND early treatment? " >,

yes, there are a few that have finished, a bunch more coming to the end of the

casting process, and thankfully now, so many more kids starting the process.

Alot of kids are getting the earlier tx., my son being one of them, but even the

older kids up to age 3 are benfitting from the casting.

Please always feel free to ask questions. This is definitely the place to ask.

These parents are GREAT! Take care.

/Cole

tiagarcia <moniquetiagarcia@...> wrote:

Hi everyone, it's again. is doing really well

in his cast. He looks to be growing into it quite fast, it's

certainly not as roomy as it was 6 weeks ago.

I am in the process of learning more about the serial plaster casts

and early detection. I can't believe how interested and fascinated I

am by it. The RVAD article I am reading makes me so frustrated as

this wasn't done for . In fact, I was told there was nothing

more that could be done for except for the TLSO brace, and we

were to just watch and wait for the curve to increase until it got

so bad he needed spinal fusion. Reading all this literature saddens

me for my little boy, who, with proper detection and early

treatment, would probably have a curve that has resolved by now. Can

I ask a question, what are your experiences with the serial plaster

casts for your children? Have any of the childrens spines in this

group resolved yet, or are they still in the process of doing so?

Have any of you experienced early detection AND early treatment?

s curve is a very stiff and rigid curve, and I am learning the

differences between benign progressive, intermediate and malignant

curves. I don't know what s falls into, I do know it isn't a

flexible curve whatsoever. If anyone has time to send a message

back, I would love to learn more about your experiences with this.

I must go. Tomorrow we have speech therapy early and I need to get

to bed. The three kids wake up VERY early!

Take care everyone,

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

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

starting at 1¢/min.

August 11, 2006

,

Ditto what the other moms are saying -- Don't give up hope! Jake's

spine/curve was not rigid, but we were fortunate enough to have early

detection and early treatment. Jake is now in a brace after 3

casts. I forgot how old your son is? I am glad that you sought an

alternative for him. Kudos to you!!! Good luck with everything.

All our best,

& Jake

Hi everyone, it's

again. is doing really well

> in his cast. He looks to be growing into it quite fast, it's

> certainly not as roomy as it was 6 weeks ago.

>

> I am in the process of learning more about the serial plaster

casts

> and early detection. I can't believe how interested and fascinated

I

> am by it. The RVAD article I am reading makes me so frustrated as

> this wasn't done for . In fact, I was told there was nothing

> more that could be done for except for the TLSO brace, and

we

> were to just watch and wait for the curve to increase until it got

> so bad he needed spinal fusion. Reading all this literature

saddens

> me for my little boy, who, with proper detection and early

> treatment, would probably have a curve that has resolved by now.

Can

> I ask a question, what are your experiences with the serial

plaster

> casts for your children? Have any of the childrens spines in this

> group resolved yet, or are they still in the process of doing so?

> Have any of you experienced early detection AND early treatment?

> s curve is a very stiff and rigid curve, and I am learning

the

> differences between benign progressive, intermediate and malignant

> curves. I don't know what s falls into, I do know it isn't a

> flexible curve whatsoever. If anyone has time to send a message

> back, I would love to learn more about your experiences with

this.

>

> I must go. Tomorrow we have speech therapy early and I need to get

> to bed. The three kids wake up VERY early!

>

> Take care everyone,

>

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

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

Great rates starting at 1¢/min.

>

August 12, 2006

Hi Carmell,

thanks for your kind words. s ortho in Australia told me

s curve was a very stiff and rigid curve, with limited

flexibility. He failed to mention serial plaster casting, in fact,

told us it was a backwards approach. Against his advice, my family

flew to London for treatment. We met the wonderful Mr Ben ,

who also commented s curve was very stiff, so he wasn't sure

how much correction could be achieved, however, felt confident the

POP jackets would at least HOLD the curve. Unfortunaltey, due to the

severity of s heart condition (half a heart...HLHS) he was

rejected from Stanmore and referred to a Mr Hilali Noordeen at Great

Ormond Street Hospital. Mr Noordeen was again telling us s

curve (after assessing him) was so stiff and rigid we wouldn't get

any correction, and in fact, the jackets would not even hold the

curve. He wanted us to consider growth rods in 6 months time, to

which I told him I wanted to persue the POP jackets. He was

surprised that s curve went from 60 degrees to 32 degrees.

Oh, I'm not sure if I wrote in my last email about s heart. He

has a major heart condition called Hypoplastic left heart syndrome

or HLHS. Basically, he only has half a heart and has had two open

heart surgeries and needs another next year to complete the three

staged palliative surgeries. His life expectancy is unknown,

however, he is doing very well at the moment. We lived in the Royal

Childrens hospital in Melbourne Australia for four months while he

remained in ICU and eventually the cardiac ward.

Thankyou for giving me hope. It is wonderful to hear real parents

telling me positive things about the POP jackets. It is really

helping me through a difficult time!

Take care

>

> Hi ,

>

> <<s curve is a very stiff and rigid curve,...>>

>

> How do you know this? Does he any medical condition

> that prevents the spine from having ANY flexibility?

> Is he a generally healthy child, with scoliosis as a

> side condition?

>

> I ask these questions because many parents have been

> told their child's spine is rigid, when in reality it

> is not. I know a mom (one of the many 's on

> the list) who's 11 month old Liam was told he had a

> very rigid spine, with a 100+ degree curve. There was

> nothing they could do to improve the curve, just buy

> time until spinal fusion surgery could be done.

> brought Liam to Shriners in SLC and with the

> FIRST cast, his curve was reduced to 50 degrees. A

> rigid spine? I think not.

>

> Please don't give up. There is hope for your .

> I promise. If it isn't serial casting, there are

> other things that can help without having to fuse at

> an early age.

>

> My best,

> Carmell

>

> mom to Kara, idiopathic scoliosis, Blake 15, GERD and Braydon 11,

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, single umblilical artery, tonsil-adnoidectomy and ear tubes

(3/98), etc. http://carmellb-ivil.tripod.com/myfamily/

>

> __________________________________________________

>

August 12, 2006

Hi Tracey,

is now three and a half. We have been told since he was 18

months his spine was rigid. I am so upset with myself for not acting

sooner for my little man. If only I had've conducted my own research

and not listened to what I was being told. Very upsetting, however,

I am now using that anger to being proactive for , never

allowing that to happen again.

Good for you standing up for your little Lexi and getting thrown out

of the hospital! You've obviously got a lot of guts and I truly

admire that. I can't believe how poorly s case was treated, as

parents we have every right to have access to correct information.

Yes, I am prepared to fight for my little son. I believe this

treatment should be in Australia and I am going to do everything

withing my power to make sure these little children (who are

powerless in this situation) have their rights heard and are able to

access this treatment. It is crazy that such a proven treatment is

not available here!

Anyway, I hope everything goes well for Lexi and her hand

operations. How old is she now?

>

> have to agree with Carmell's email . First off DO NOT

GIVE UP!! Do not feel you have to sit and wait. I think we can all

attest on this board that we as parent's have to be as proactive as

possible. I personally have been thrown out of a hospital by

security for fighting with Lexi's ortho!!!! LOL

>

> i have the same question as carmell.......how do you know his

spine is this rigid? are there other medical issues going on with

him? did they tell you it is due to his age? as they get older the

spine does lose some of its flexibility, but there are things that

can be done.

>

> to your question about experiences with serial plaster casting. i

can tell you we were told when lexi was 4 months she had a slight

curve. it wasn't until she was a year old she was diagnosed with

idiopathic scoli. she was placed in her first cast in august of 2005

at 21 mo old. she had 2 consecutive casts and is now in a tlso brace

due to hand operations coming up and she cannot be in a cast and

have surgery with those on. we are having great success with our

brace at this time BUT without the early treatment and the early

casting, i do not feel braces would be an option now. that is all i

can really say about our experience.

>

> i will emphasize again do not lose hope......READ READ READ on

what you can find and fight for your son. know that this board is

such a great place with great moms who have a ton of info and

advice.

>

> HANG IN THERE!!!!!

>

> tracey ( lexi's mom )

>

> Re: Hi from Australia again!

>

> Hi ,

>

> <<s curve is a very stiff and rigid curve,...>>

>

> How do you know this? Does he any medical condition

> that prevents the spine from having ANY flexibility?

> Is he a generally healthy child, with scoliosis as a

> side condition?

>

> I ask these questions because many parents have been

> told their child's spine is rigid, when in reality it

> is not. I know a mom (one of the many 's on

> the list) who's 11 month old Liam was told he had a

> very rigid spine, with a 100+ degree curve. There was

> nothing they could do to improve the curve, just buy

> time until spinal fusion surgery could be done.

> brought Liam to Shriners in SLC and with the

> FIRST cast, his curve was reduced to 50 degrees. A

> rigid spine? I think not.

>

> Please don't give up. There is hope for your .

> I promise. If it isn't serial casting, there are

> other things that can help without having to fuse at

> an early age.

>

> My best,

> Carmell

>

> mom to Kara, idiopathic scoliosis, Blake 15, GERD and Braydon

11, 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, single umblilical artery, tonsil-adnoidectomy and

ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/

>

> __________________________________________________

>

August 12, 2006

Hi ,

Great to hear Coles story! It is so promising to hear what you

wrote! I was also interested in the fact that Coles spine became

more flexible as time progressed due to the manipulation from the

treatment.

How old is Cole now? Has he had any problems with his POP jackets?

How often have his been reapplied (3 months, 4 months etc)

It is wonderful to hear another success story

Take care

Hi everyone, it's

again. is doing really well

> in his cast. He looks to be growing into it quite fast, it's

> certainly not as roomy as it was 6 weeks ago.

>

> I am in the process of learning more about the serial plaster

casts

> and early detection. I can't believe how interested and

fascinated I

> am by it. The RVAD article I am reading makes me so frustrated as

> this wasn't done for . In fact, I was told there was

nothing

> more that could be done for except for the TLSO brace, and

we

> were to just watch and wait for the curve to increase until it

got

> so bad he needed spinal fusion. Reading all this literature

saddens

> me for my little boy, who, with proper detection and early

> treatment, would probably have a curve that has resolved by now.

Can

> I ask a question, what are your experiences with the serial

plaster

> casts for your children? Have any of the childrens spines in this

> group resolved yet, or are they still in the process of doing so?

> Have any of you experienced early detection AND early treatment?

> s curve is a very stiff and rigid curve, and I am learning

the

> differences between benign progressive, intermediate and

malignant

> curves. I don't know what s falls into, I do know it isn't

a

> flexible curve whatsoever. If anyone has time to send a message

> back, I would love to learn more about your experiences with

this.

>

> I must go. Tomorrow we have speech therapy early and I need to

get

> to bed. The three kids wake up VERY early!

>

> Take care everyone,

>

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

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

Great rates starting at 1¢/min.

>

August 12, 2006

Hi . is now three and a half. He was in a TLSO brace

for two years!!! His curve was progressing all the while from 40

degrees to 55-60 degrees (depending what X-ray they go off) His

first plaster cast was applied 6 weeks ago. How old is Jake?

Please don't laugh, but I have a question. What does " Kudos " mean?

Is this an American term? I've never heard of it before. (Being an

Aussie) Haha, sorry!

Take care and I wish you all the best!

Hi everyone, it's

> again. is doing really well

> > in his cast. He looks to be growing into it quite fast, it's

> > certainly not as roomy as it was 6 weeks ago.

> >

> > I am in the process of learning more about the serial plaster

> casts

> > and early detection. I can't believe how interested and

fascinated

> I

> > am by it. The RVAD article I am reading makes me so frustrated

as

> > this wasn't done for . In fact, I was told there was

nothing

> > more that could be done for except for the TLSO brace,

and

> we

> > were to just watch and wait for the curve to increase until it

got

> > so bad he needed spinal fusion. Reading all this literature

> saddens

> > me for my little boy, who, with proper detection and early

> > treatment, would probably have a curve that has resolved by

now.

> Can

> > I ask a question, what are your experiences with the serial

> plaster

> > casts for your children? Have any of the childrens spines in

this

> > group resolved yet, or are they still in the process of doing

so?

> > Have any of you experienced early detection AND early

treatment?

> > s curve is a very stiff and rigid curve, and I am

learning

> the

> > differences between benign progressive, intermediate and

malignant

> > curves. I don't know what s falls into, I do know it

isn't a

> > flexible curve whatsoever. If anyone has time to send a message

> > back, I would love to learn more about your experiences with

> this.

> >

> > I must go. Tomorrow we have speech therapy early and I need to

get

> > to bed. The three kids wake up VERY early!

> >

> > Take care everyone,

> >

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

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

> Great rates starting at 1¢/min.

> >

August 13, 2006

Thanks Tracey,

Oh, I know that feeling of being anxious and just wanting to get

surgery over with. It certainly doesn't get easier with time, no

matter how many times your child goes in, that anxiety never

disapears. Next time I go to London I am on my own, my husband is

watching my two little ones in Australia. (Callum is 2 and Emma is 5

months) I am DREADING it, but once the time comes, I know I have to

be brave.

Take care, and all the best. Where abouts in America do you come

from (what state)?

> >

> > have to agree with Carmell's email . First off DO NOT

> GIVE UP!! Do not feel you have to sit and wait. I think we can

all

> attest on this board that we as parent's have to be as proactive

as

> possible. I personally have been thrown out of a hospital by

> security for fighting with Lexi's ortho!!!! LOL

> >

> > i have the same question as carmell.......how do you know his

> spine is this rigid? are there other medical issues going on

with

> him? did they tell you it is due to his age? as they get older

the

> spine does lose some of its flexibility, but there are things

that

> can be done.

> >

> > to your question about experiences with serial plaster

casting. i

> can tell you we were told when lexi was 4 months she had a

slight

> curve. it wasn't until she was a year old she was diagnosed with

> idiopathic scoli. she was placed in her first cast in august of

2005

> at 21 mo old. she had 2 consecutive casts and is now in a tlso

brace

> due to hand operations coming up and she cannot be in a cast and

> have surgery with those on. we are having great success with our

> brace at this time BUT without the early treatment and the early

> casting, i do not feel braces would be an option now. that is

all i

> can really say about our experience.

> >

> > i will emphasize again do not lose hope......READ READ READ on

> what you can find and fight for your son. know that this board

is

> such a great place with great moms who have a ton of info and

> advice.

> >

> > HANG IN THERE!!!!!

> >

> > tracey ( lexi's mom )

> >

> > Re: Hi from Australia again!

> >

> > Hi ,

> >

> > <<s curve is a very stiff and rigid curve,...>>

> >

> > How do you know this? Does he any medical condition

> > that prevents the spine from having ANY flexibility?

> > Is he a generally healthy child, with scoliosis as a

> > side condition?

> >

> > I ask these questions because many parents have been

> > told their child's spine is rigid, when in reality it

> > is not. I know a mom (one of the many 's on

> > the list) who's 11 month old Liam was told he had a

> > very rigid spine, with a 100+ degree curve. There was

> > nothing they could do to improve the curve, just buy

> > time until spinal fusion surgery could be done.

> > brought Liam to Shriners in SLC and with the

> > FIRST cast, his curve was reduced to 50 degrees. A

> > rigid spine? I think not.

> >

> > Please don't give up. There is hope for your .

> > I promise. If it isn't serial casting, there are

> > other things that can help without having to fuse at

> > an early age.

> >

> > My best,

> > Carmell

> >

> > mom to Kara, idiopathic scoliosis, Blake 15, GERD and Braydon

> 11, 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, single umblilical artery, tonsil-adnoidectomy

and

> ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/

> >

> > __________________________________________________

> >

August 13, 2006

Hi Carmell,

wow, what a REWARDING job that must be, working for Make a wish

foundation. is eligable to make a wish. He has already met

the wiggles, but he wants to meet them again, so I'm considering

making that his wish. I think in Australia, they have to be over 5

to get a " BIG " wish like that, under five they can get a box of toys

etc. So he must wait!

You're right, HLHS is one of the most severe forms of congenital

heart defects. He is on palliative care with an unknown life

expectancy, however, the oldest survivors are in their 20's and live

in America. For some reason though, these kids can just go into

heart failure when they are very little and pass away. I've lived

with that fear long enough to let go of the fear, and embrace the

fact that it is beyond my control and to ENJOY life! This second

challenge (scoliosis) is certainly testing my attitude, but I won't

be bullied by fear you know.

I've noticed on the bottom of your emails you have an extensive list

of conditions for your son. Is your story printed on the ISOP

website? I would love to read about it. You have dealt with so much!

Please let me know as I would love (and need) to read other peoples

inspiring stories!

Take care

>

> Hi ,

>

> I know several kids who have HLHS (hubby and I are

> volunteers for the Make A Wish Foundation, and several

> of our Wish Kids have had HLHS). It isn't a simple

> defect. I am happy to hear is doing well and

> beating the odds, so to speak.

>

> I wish you continued best wishes for the best outcome

> he can have. Keep us posted.

>

> Carmell

>

> mom to Kara, idiopathic scoliosis, Blake 15, GERD and Braydon 11,

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, single umblilical artery, tonsil-adnoidectomy and ear tubes

(3/98), etc. http://carmellb-ivil.tripod.com/myfamily/

>

> __________________________________________________

>

August 14, 2006

Jake just turned 2 years old! So we're experiencing the terrible

2's. Our first son never went through " it " , so we were completely

unprepared. I hope this doesn't last for the whole next year. A lot

of my dialogue with him consists of " Jake, don't do that. " " Jake,

stop it. " " Jake, no. " " Jake, don't hit your brother. " You get the

idea.

" Kudos " means cheers or bravo. And, no, I didn't laugh!

Keep the faith, .

Smiles to you,

& Jake

Hi everyone, it's

> > again. is doing really well

> > > in his cast. He looks to be growing into it quite fast, it's

> > > certainly not as roomy as it was 6 weeks ago.

> > >

> > > I am in the process of learning more about the serial plaster

> > casts

> > > and early detection. I can't believe how interested and

> fascinated

> > I

> > > am by it. The RVAD article I am reading makes me so frustrated

> as

> > > this wasn't done for . In fact, I was told there was

> nothing

> > > more that could be done for except for the TLSO brace,

> and

> > we

> > > were to just watch and wait for the curve to increase until it

> got

> > > so bad he needed spinal fusion. Reading all this literature

> > saddens

> > > me for my little boy, who, with proper detection and early

> > > treatment, would probably have a curve that has resolved by

> now.

> > Can

> > > I ask a question, what are your experiences with the serial

> > plaster

> > > casts for your children? Have any of the childrens spines in

> this

> > > group resolved yet, or are they still in the process of doing

> so?

> > > Have any of you experienced early detection AND early

> treatment?

> > > s curve is a very stiff and rigid curve, and I am

> learning

> > the

> > > differences between benign progressive, intermediate and

> malignant

> > > curves. I don't know what s falls into, I do know it

> isn't a

> > > flexible curve whatsoever. If anyone has time to send a

message

> > > back, I would love to learn more about your experiences with

> > this.

> > >

> > > I must go. Tomorrow we have speech therapy early and I need to

> get

> > > to bed. The three kids wake up VERY early!

> > >

> > > Take care everyone,

> > >

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

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

> > Great rates starting at 1¢/min.

> > >

August 14, 2006

Hi Tracey, I know what you mean about the mind wandering!!! (3 kids)

Yes, had to be cast is London. It isn't possible for him to

go to Shriners as no anaethetist will touch him unless there's an

ICU and cardiac ward within the hospital. This is due to him major

heart condition. The only place at the moment is Great Ormond Street

hospital.

Who knows, one day there may be a hospital in the US he can go to,

but at the moment it's London.

We are in our winter here in Perth, Western Australia. Can't wait

for summer, want to trade!

Is Houston a big city? I imagine it is. Perth has a million people

in it, pretty small for a major city in Western Australia.

Take care

> > >

> > > have to agree with Carmell's email . First off DO NOT

> > GIVE UP!! Do not feel you have to sit and wait. I think we can

> all

> > attest on this board that we as parent's have to be as

proactive

> as

> > possible. I personally have been thrown out of a hospital by

> > security for fighting with Lexi's ortho!!!! LOL

> > >

> > > i have the same question as carmell.......how do you know

his

> > spine is this rigid? are there other medical issues going on

> with

> > him? did they tell you it is due to his age? as they get older

> the

> > spine does lose some of its flexibility, but there are things

> that

> > can be done.

> > >

> > > to your question about experiences with serial plaster

> casting. i

> > can tell you we were told when lexi was 4 months she had a

> slight

> > curve. it wasn't until she was a year old she was diagnosed

with

> > idiopathic scoli. she was placed in her first cast in august

of

> 2005

> > at 21 mo old. she had 2 consecutive casts and is now in a tlso

> brace

> > due to hand operations coming up and she cannot be in a cast

and

> > have surgery with those on. we are having great success with

our

> > brace at this time BUT without the early treatment and the

early

> > casting, i do not feel braces would be an option now. that is

> all i

> > can really say about our experience.

> > >

> > > i will emphasize again do not lose hope......READ READ READ

on

> > what you can find and fight for your son. know that this board

> is

> > such a great place with great moms who have a ton of info and

> > advice.

> > >

> > > HANG IN THERE!!!!!

> > >

> > > tracey ( lexi's mom )

> > >

> > > Re: Hi from Australia again!

> > >

> > > Hi ,

> > >

> > > <<s curve is a very stiff and rigid curve,...>>

> > >

> > > How do you know this? Does he any medical condition

> > > that prevents the spine from having ANY flexibility?

> > > Is he a generally healthy child, with scoliosis as a

> > > side condition?

> > >

> > > I ask these questions because many parents have been

> > > told their child's spine is rigid, when in reality it

> > > is not. I know a mom (one of the many 's on

> > > the list) who's 11 month old Liam was told he had a

> > > very rigid spine, with a 100+ degree curve. There was

> > > nothing they could do to improve the curve, just buy

> > > time until spinal fusion surgery could be done.

> > > brought Liam to Shriners in SLC and with the

> > > FIRST cast, his curve was reduced to 50 degrees. A

> > > rigid spine? I think not.

> > >

> > > Please don't give up. There is hope for your .

> > > I promise. If it isn't serial casting, there are

> > > other things that can help without having to fuse at

> > > an early age.

> > >

> > > My best,

> > > Carmell

> > >

> > > mom to Kara, idiopathic scoliosis, Blake 15, GERD and

Braydon

> > 11, 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, single umblilical artery, tonsil-

adnoidectomy

> and

> > ear tubes (3/98), etc. http://carmellb-

ivil.tripod.com/myfamily/

> > >

> > > __________________________________________________

> > >

August 14, 2006

Hahaha, My two little boys both went through that. is out of

it, though still cheeky at times, and Callum is two and a bit, but

he went through it at around 18 months. He is the most mischevious

kid I've ever met in my life ANYWAY (Callum) so the terrible twos

were just mad! Yes, I felt like I was a broken record for about 6

months. Isn't it funny how they decide to be so independant all of a

sudden!

How old is your older boy?

Take care

Hi everyone, it's

> > > again. is doing really well

> > > > in his cast. He looks to be growing into it quite fast,

it's

> > > > certainly not as roomy as it was 6 weeks ago.

> > > >

> > > > I am in the process of learning more about the serial

plaster

> > > casts

> > > > and early detection. I can't believe how interested and

> > fascinated

> > > I

> > > > am by it. The RVAD article I am reading makes me so

frustrated

> > as

> > > > this wasn't done for . In fact, I was told there was

> > nothing

> > > > more that could be done for except for the TLSO

brace,

> > and

> > > we

> > > > were to just watch and wait for the curve to increase until

it

> > got

> > > > so bad he needed spinal fusion. Reading all this literature

> > > saddens

> > > > me for my little boy, who, with proper detection and early

> > > > treatment, would probably have a curve that has resolved by

> > now.

> > > Can

> > > > I ask a question, what are your experiences with the serial

> > > plaster

> > > > casts for your children? Have any of the childrens spines

in

> > this

> > > > group resolved yet, or are they still in the process of

doing

> > so?

> > > > Have any of you experienced early detection AND early

> > treatment?

> > > > s curve is a very stiff and rigid curve, and I am

> > learning

> > > the

> > > > differences between benign progressive, intermediate and

> > malignant

> > > > curves. I don't know what s falls into, I do know it

> > isn't a

> > > > flexible curve whatsoever. If anyone has time to send a

> message

> > > > back, I would love to learn more about your experiences

with

> > > this.

> > > >

> > > > I must go. Tomorrow we have speech therapy early and I need

to

> > get

> > > > to bed. The three kids wake up VERY early!

> > > >

> > > > Take care everyone,

> > > >

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

> > > > Talk is cheap. Use Messenger to make PC-to-Phone

calls.

> > > Great rates starting at 1¢/min.

> > > >

August 15, 2006

,

There are approx. 60 children in the U.S being treated early, that I am aware

of.....Although, that number could be bigger.

There are a few that have grown straight on this group, so I am sure they will

chime in when they see your post.

Please post s photo on the group, if you wish.

Talk soon,

HRH

Hi from Australia again!