Re: who is 5

[Guest guest]

Hi ...

I really hope you'll get some solid advice you feel comfortable with and you

can go out and seek several opinions for your daughter.

We live in VA, where in NC do you live?

My son, Evan's story is up on the ISOP website, luckily he was treated with

the POP jackets and is now wearing a brace to maintain the correction achieved.

Good luck on your journey

and Evan

havetolovelife wrote:

Shellie,

Just reading the other message from eariler. My name is and we

live in North Carolina. 's syndrome doesn't affect her back, so

they say. She has Arthrogryposis in her legs, scolosis in her back

and Moebius in her face. They say that she does have her nerves, but

just weak as to her muscles. is a normal kid, functions like

every other kid, she just looks tired alot and she mostly crawls. I

would really be interested in getting s case to Dr. in

Texas for a 2nd opinion for the VEPTR. If you could let me know how I

can contact his practice that would be great. So do you think that

the only routes left is the casting, VEPTR, or another growing rod?

Is there not anything else out there for severe scoliosis? I really

don't like the idea of the Halo traction b/c if the growing rod ripped

away from her sping, the whole bolt idea for her head, really scares

me. Also, if we do the Halo-traction, has to stay in the

hospital. She would have to be under constant supervision.

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

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[Guest guest]

Hi ,

<<Is there another name for the POP jacket so I can

look further into them?>>

POP is just Plaster of Paris (sp?). Traditional

plaster casts.

<< can have a spinal fusion when she is 8 even

though they would like to wait longer.>>

I would hope she can wait much longer than 8yrs old.

With as many medical issues as she has, her risk of

fusion failure will be much higher until she reaches

skeletal maturity. You want to wait as long as

possible before fusion.

<<My mother inlaw was just telling me about s

Hopkins in Baltimore.>>

I wouldn't waste my time going to s Hopkins. They

are a great research hospital and a great place for

some orthopedic work. For our kids with complex spine

issues, this isn't the place I would take my child.

<<Hopefully in the next couple of days we will find

out our appointment date with Dr. Emmans.>>

Good luck! Let us know when you hear about meeting

with Dr. Emans. I know he's a very knowledgeable

surgeon and a nice man.

Keep us posted.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

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

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

________________________________________________________________________________\

____

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[Guest guest]

You have been most helpful. I was going to call s Hopkins tomorrow, but I

will not waste my time. Thanks for that advice! I also hope we can wait as

long as possible with the spinal fusion, I am sure to get LOTS of opinions when

that time comes. Just trying to keep my daughter alive at this point. I can't

imagine that there isn't more options for such a common problem in our children,

or is it not? Thanks again carmell for the information and will keep you

updated on . I am still trying to get use to this web sight and other

parents are telling me to look up their stories. I would love to read them but

do not know how to get to that part of the sight. Can you help me?

Carmell Burns wrote: Hi ,

<<Is there another name for the POP jacket so I can

look further into them?>>

POP is just Plaster of Paris (sp?). Traditional

plaster casts.

<< can have a spinal fusion when she is 8 even

though they would like to wait longer.>>

I would hope she can wait much longer than 8yrs old.

With as many medical issues as she has, her risk of

fusion failure will be much higher until she reaches

skeletal maturity. You want to wait as long as

possible before fusion.

<<My mother inlaw was just telling me about s

Hopkins in Baltimore.>>

I wouldn't waste my time going to s Hopkins. They

are a great research hospital and a great place for

some orthopedic work. For our kids with complex spine

issues, this isn't the place I would take my child.

<<Hopefully in the next couple of days we will find

out our appointment date with Dr. Emmans.>>

Good luck! Let us know when you hear about meeting

with Dr. Emans. I know he's a very knowledgeable

surgeon and a nice man.

Keep us posted.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

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

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

__________________________________________________________

Shape Yahoo! in your own image. Join our Network Research Panel today!

http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7

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

Park yourself in front of a world of choices in alternative vehicles.

Visit the Yahoo! Auto Green Center.

[Guest guest]

You have been most helpful. I was going to call s Hopkins tomorrow, but I

will not waste my time. Thanks for that advice! I also hope we can wait as

long as possible with the spinal fusion, I am sure to get LOTS of opinions when

that time comes. Just trying to keep my daughter alive at this point. I can't

imagine that there isn't more options for such a common problem in our children,

or is it not? Thanks again carmell for the information and will keep you

updated on . I am still trying to get use to this web sight and other

parents are telling me to look up their stories. I would love to read them but

do not know how to get to that part of the sight. Can you help me?

Carmell Burns wrote: Hi ,

<<Is there another name for the POP jacket so I can

look further into them?>>

POP is just Plaster of Paris (sp?). Traditional

plaster casts.

<< can have a spinal fusion when she is 8 even

though they would like to wait longer.>>

I would hope she can wait much longer than 8yrs old.

With as many medical issues as she has, her risk of

fusion failure will be much higher until she reaches

skeletal maturity. You want to wait as long as

possible before fusion.

<<My mother inlaw was just telling me about s

Hopkins in Baltimore.>>

I wouldn't waste my time going to s Hopkins. They

are a great research hospital and a great place for

some orthopedic work. For our kids with complex spine

issues, this isn't the place I would take my child.

<<Hopefully in the next couple of days we will find

out our appointment date with Dr. Emmans.>>

Good luck! Let us know when you hear about meeting

with Dr. Emans. I know he's a very knowledgeable

surgeon and a nice man.

Keep us posted.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

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

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

__________________________________________________________

Shape Yahoo! in your own image. Join our Network Research Panel today!

http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7

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

Park yourself in front of a world of choices in alternative vehicles.

Visit the Yahoo! Auto Green Center.

[Guest guest]

Hi ,

<<I can't imagine that there isn't more options for

such a common problem in our children, or is it not?>>

Teenagers with scoliosis is a relatively common

condition - 1-2% of the population has some curve of

the spine. Many of these people (my daughter

included) never need surgery or other medical

intervention. Their spines are curved, and they move

on with life.

Scoliosis in very young children is NOT common.

Congenital scoliosis is actually slightly more common

than idiopathic scoliosis, but I don't have the

statistics to document that. Scoliosis is such a

general term. The CAUSE of the scoliosis needs to be

addressed before surgical intervention. If you do a

fusion on a very young child, just because they have a

large curve, without finding the source of the

problem, you have a potential for life-long problems

related to fusion/scoliosis, etc. It is critically

important to find a pediatric orthopedic surgeon who

specializes in young children with spine malformations

and complex medical issues. There is only a handful

of ped. orthos in the USA who I would trust my child's

life to. This handful of surgeons has seen many

varieties and severities of spine problems. Since

has arthrogryposis too, she needs someone who

has treated many children like her. Not just " seen it

in medical school " . Dr. Emans has lots of experience.

I believe he will be a great start in finding

solutions to her problems. Hopefully. I also know

several kids who had VEPTR evaluations as young

children, then a few years later they were

re-evaluated and have had successful VEPTR implants.

Don't give up hope. If VEPTR is not right for her,

something will be. Dr. Emans has a great team of

neurosurgeons and other specialists that may need to

be involved so she gets the best recommendations and

best care possible. I feel Dr. has done this

for Braydon, and I hope all kids have access to care

like that.

<<I would love to read them but do not know how to get

to that part of the sight. Can you help me?>>

If you click on the link at the bottom of this page

for the CongenitalScoliosisSupport site, it will take

you to the main page. You can view photos, check out

the database (only a few families have been added so

far), click on links to other websites related to

congenital scoliosis, etc. If families have private

websites, they should give you the link to click on

and view their pages. I have a link at the bottom of

the my signature line.

Good luck! I'll stop rambling.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

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

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

________________________________________________________________________________\

____

Be a better Globetrotter. Get better travel answers from someone who knows.

Yahoo! Answers - Check it out.

http://answers.yahoo.com/dir/?link=list & sid=396545469

[Guest guest]

Hi ,

<<I can't imagine that there isn't more options for

such a common problem in our children, or is it not?>>

Teenagers with scoliosis is a relatively common

condition - 1-2% of the population has some curve of

the spine. Many of these people (my daughter

included) never need surgery or other medical

intervention. Their spines are curved, and they move

on with life.

Scoliosis in very young children is NOT common.

Congenital scoliosis is actually slightly more common

than idiopathic scoliosis, but I don't have the

statistics to document that. Scoliosis is such a

general term. The CAUSE of the scoliosis needs to be

addressed before surgical intervention. If you do a

fusion on a very young child, just because they have a

large curve, without finding the source of the

problem, you have a potential for life-long problems

related to fusion/scoliosis, etc. It is critically

important to find a pediatric orthopedic surgeon who

specializes in young children with spine malformations

and complex medical issues. There is only a handful

of ped. orthos in the USA who I would trust my child's

life to. This handful of surgeons has seen many

varieties and severities of spine problems. Since

has arthrogryposis too, she needs someone who

has treated many children like her. Not just " seen it

in medical school " . Dr. Emans has lots of experience.

I believe he will be a great start in finding

solutions to her problems. Hopefully. I also know

several kids who had VEPTR evaluations as young

children, then a few years later they were

re-evaluated and have had successful VEPTR implants.

Don't give up hope. If VEPTR is not right for her,

something will be. Dr. Emans has a great team of

neurosurgeons and other specialists that may need to

be involved so she gets the best recommendations and

best care possible. I feel Dr. has done this

for Braydon, and I hope all kids have access to care

like that.

<<I would love to read them but do not know how to get

to that part of the sight. Can you help me?>>

If you click on the link at the bottom of this page

for the CongenitalScoliosisSupport site, it will take

you to the main page. You can view photos, check out

the database (only a few families have been added so

far), click on links to other websites related to

congenital scoliosis, etc. If families have private

websites, they should give you the link to click on

and view their pages. I have a link at the bottom of

the my signature line.

Good luck! I'll stop rambling.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

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

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

________________________________________________________________________________\

____

Be a better Globetrotter. Get better travel answers from someone who knows.

Yahoo! Answers - Check it out.

http://answers.yahoo.com/dir/?link=list & sid=396545469

[Guest guest]

Hi ,

<<I can't imagine that there isn't more options for

such a common problem in our children, or is it not?>>

Teenagers with scoliosis is a relatively common

condition - 1-2% of the population has some curve of

the spine. Many of these people (my daughter

included) never need surgery or other medical

intervention. Their spines are curved, and they move

on with life.

Scoliosis in very young children is NOT common.

Congenital scoliosis is actually slightly more common

than idiopathic scoliosis, but I don't have the

statistics to document that. Scoliosis is such a

general term. The CAUSE of the scoliosis needs to be

addressed before surgical intervention. If you do a

fusion on a very young child, just because they have a

large curve, without finding the source of the

problem, you have a potential for life-long problems

related to fusion/scoliosis, etc. It is critically

important to find a pediatric orthopedic surgeon who

specializes in young children with spine malformations

and complex medical issues. There is only a handful

of ped. orthos in the USA who I would trust my child's

life to. This handful of surgeons has seen many

varieties and severities of spine problems. Since

has arthrogryposis too, she needs someone who

has treated many children like her. Not just " seen it

in medical school " . Dr. Emans has lots of experience.

I believe he will be a great start in finding

solutions to her problems. Hopefully. I also know

several kids who had VEPTR evaluations as young

children, then a few years later they were

re-evaluated and have had successful VEPTR implants.

Don't give up hope. If VEPTR is not right for her,

something will be. Dr. Emans has a great team of

neurosurgeons and other specialists that may need to

be involved so she gets the best recommendations and

best care possible. I feel Dr. has done this

for Braydon, and I hope all kids have access to care

like that.

<<I would love to read them but do not know how to get

to that part of the sight. Can you help me?>>

If you click on the link at the bottom of this page

for the CongenitalScoliosisSupport site, it will take

you to the main page. You can view photos, check out

the database (only a few families have been added so

far), click on links to other websites related to

congenital scoliosis, etc. If families have private

websites, they should give you the link to click on

and view their pages. I have a link at the bottom of

the my signature line.

Good luck! I'll stop rambling.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

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

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

________________________________________________________________________________\

____

Be a better Globetrotter. Get better travel answers from someone who knows.

Yahoo! Answers - Check it out.

http://answers.yahoo.com/dir/?link=list & sid=396545469

[Guest guest]

You can go to the links section on the left side of the page here and

look at the free and discount travel options. Glad to hear you got an

appointment. Keep us posted on how it goes. Best of luck.

Rochelle

>

> Well, we just got news that Dr. Emmans wants to see next

> Friday!!! This is a shock to our family b/c we all thought since he

> was booked until sometime in October, that we would have time to

> schedule transportation. When the nurse told us today that

> needed to come next Friday, I was then thinking " this must be really

> serious. " I know this is a matter of life, but it seems not to hit

> you until things start changing, like getting that DR appointment

that

> I have been talking about for a couple months now. So my question is

> this: Any one know of anyway to get my daughter to Boston, MA from NC

> that doesn't cost 1200.00? I have tried Amtrak but they are all

> booked, the planes are priced crazy with NO DISCOUNTS for medical,

> don't really want to drive 13 hours (not even sure I could do it),

any

> ideas??

>

[Guest guest]

Hi

If you click on the Links section of this page, left hand side,

there is a folder " How Do I Get There " The folder has some travel

links, like Miracle and Angel Flights. They fly children, free,

for medical reasons.

We've flown with Angel Flights a few times now, and they've been

great!

Good Luck - Hopefully you get the answers you need for . Or

at least a knowledgeable 2nd opinion....

Jacki

Mum of Siobhan (pronounced Shevone - Progressive Infantile Scoliosis,

2 braces, 4 casts, and now VEPTR)

>

> Well, we just got news that Dr. Emmans wants to see next

> Friday!!! This is a shock to our family b/c we all thought since he

> was booked until sometime in October, that we would have time to

> schedule transportation. When the nurse told us today that

> needed to come next Friday, I was then thinking " this must be really

> serious. " I know this is a matter of life, but it seems not to hit

> you until things start changing, like getting that DR appointment

that

> I have been talking about for a couple months now. So my question is

> this: Any one know of anyway to get my daughter to Boston, MA from NC

> that doesn't cost 1200.00? I have tried Amtrak but they are all

> booked, the planes are priced crazy with NO DISCOUNTS for medical,

> don't really want to drive 13 hours (not even sure I could do it),

any

> ideas??

>

[Guest guest]

We go from GA. To Erie and i use miracle flights and this time I'm trying angel

flights they cover the flight but I think there is a time limit. U can look both

up online and call I did ask.com for a search to find the web sites. Good luck!

Sent via BlackBerry from T-Mobile

who is 5

Well, we just got news that Dr. Emmans wants to see next

Friday!!! This is a shock to our family b/c we all thought since he

was booked until sometime in October, that we would have time to

schedule transportation. When the nurse told us today that

needed to come next Friday, I was then thinking " this must be really

serious. " I know this is a matter of life, but it seems not to hit

you until things start changing, like getting that DR appointment that

I have been talking about for a couple months now. So my question is

this: Any one know of anyway to get my daughter to Boston, MA from NC

that doesn't cost 1200.00? I have tried Amtrak but they are all

booked, the planes are priced crazy with NO DISCOUNTS for medical,

don't really want to drive 13 hours (not even sure I could do it), any

ideas??

[Guest guest]

Call Angel Flights! They should be able to help. BUT, it would only be for

you, your spouse and . Miracle Flights is also another option. Angel

Flights is free...not sure how Miracle Flights work as someone recently

mentioned that they now base it on income.

Also, the Angel Flight planes are SMALL. I mean like the size of your car

small. So, if you are a fearful flier (like me!) then it is something to

consider.

Noelle (12-2-01)

Ian (8-15-04)

who is 5

Well, we just got news that Dr. Emmans wants to see next

Friday!!! This is a shock to our family b/c we all thought since he

was booked until sometime in October, that we would have time to

schedule transportation. When the nurse told us today that

needed to come next Friday, I was then thinking " this must be really

serious. " I know this is a matter of life, but it seems not to hit

you until things start changing, like getting that DR appointment that

I have been talking about for a couple months now. So my question is

this: Any one know of anyway to get my daughter to Boston, MA from NC

that doesn't cost 1200.00? I have tried Amtrak but they are all

booked, the planes are priced crazy with NO DISCOUNTS for medical,

don't really want to drive 13 hours (not even sure I could do it), any

ideas??

[Guest guest]

Also, Northwest airlines has a program called KidCares that offers 2 free

tickets (one for the child & one parent) for medical related travel. Not sure if

they fly your route or are able to partner with other airlines, but wanted to

mention it for future trips perhaps. I think there is information on their

website.

who is 5

Thanks a million for all the responses! We did get a flight (maybe)

through Medical Air but we would have to take 2 planes and then stay 3

days for an appointment. The wonderful grandparents are going to help

with the expenses but I am sure to remember the flight agency if I

ever need them again! Thanks again for all of your help. If I could

send you all a Christmas card, I would ) Will keep you posted

next week.