Re: Needing encouragement and insight for

[Guest guest]

It is so hard to wait. We had to go through the same thing.....In

order to get the MRI done, two appts with local ortho docs, waiting

for the consult at Shriners and then waiting another 6 weeks for

Matson's first cast. He was initially diagnosed in November of last

year, official diagnosis from an ped ortho in December of last year.

We weren't able to get our consult in SLC until February 07 and then

he finally got his first cast April 24, 2007. We are due back in SLC

next week for his cast removal and second cast application. So

overall, a 5 month period. He was 11 months old at initial diagnosis.

So very similar to your . He started out with a high 30 degree

curve, in April he was at 41 degrees with a 30 degree RVAD. In his

first cast they brought it down to 20-ish degrees and 18 RVAD. We are

anxious to see how it looks after his first cast is removed next

week.

That being said, I want to reassure you. When we had our consult in

SLC when he was 12 months, they assured us that waiting another two

months was acutally in his best interest so that he could hopefully

start walking prior to casting, we could get the MRI and all the

necessary testing done, and to see if his curve progressed more or

not. They said that two months will not hinder the correction

received by casting at all. He said that catching it so early at 11

months was great and that they would not have casted him any earlier

anyway, as some curves do resolve. So, I know how frustrating it is

to wait and how it feels like you are doing nothing, but do not

worry, is at the perfect time to harness her curve with early

treatment and it is much better to get the green light via the MRI

and neurology exam on the off chance that there is something else

causing her curve. For now, try to just enjoy your sweet little girl,

hug her and cuddle her lots without a cast on. And know that you are

doing all that you can for your baby and you are a wonderful mother.

Regarding the neurology appt, push your ped to get it moved up an/or

request it yourself from the neurology doc explaining this has to be

done prior to her being seen at Shriner's. Have them put you on a

cancellation list in case some of their already scheduled patients

doesn't show up or reschedules. Also, if the MRI looks good,

Shriner's may see you sooner, than waiting for the neurologist's

green light.

Your family is beautiful. is an adorable little girl. Our

little Matson is flexible like too....That picture is too

cute.

Good luck with everything and keep us posted!

Tyler 4

Matson 16 months

Lily 5 months

wrote:

>

> Greetings! First, here's a quick update and some background:

>

> , who is 10 months old TODAY (!), was diagnosed 4 weeks ago

> with a 45o curve. She has an appointment with a local (non-casting)

> ortho on July 13th and I PUSHED to get her an MRI ASAP, which is

now

> next Thursday. Per 's advice, I have sent 2 packages with

her

> x-rays and other info to Dr. at Erie and Dr. D' at

> Philly.

>

> Dr. looked over 's package last week and said he

would

> like her to have a " clear " MRI as well as an " all clear " from a ped

> neurologist before he considers her for casting. So I took

to

> see her regular pediatrician last week, who confirmed Dr. Sander's

> concerns and who has referred us to a ped neurologist. The problem

is

> that we can't get an appointment until AUGUST (we're currently

> working on getting that moved up).

>

> SO! My concern and need for insight and encouragement is this: are

> these appointments moving along too SLOWLY?! Is her curve getting

> worse with each passing day?! All I keep thinking about is " 45

> DEGREES " ! That number is like etched in my brain, and it freaks me

> out. I feel like we " should " have caught this ealier and then she

> would already be in her first cast right now. But either way, we

> should at least be moving her toward some treatment A!S!A!P!

>

> So, does anyone have some insight and/or encouragement for me while

I

> just sit and WASTE TIME waiting for these appointments?

>

> Please help me! I'm waiting for a call-back from Dr. D''s

> office (we're playing phone tag), and our pediatrician is still

> trying to get her into the ped neuorologist sooner than August. But

I

> just feel like there should be more I can do right now...

>

> I fear that when we finally get to see a casting doc, her curve is

> going to be like 60o or more and we will look back and realize that

> we wasted so much precious time! Is there any way that I can get

into

> these appointments sooner?

>

> I don't know, maybe I'm just freaking out over nothing. Thanks for

> reading this rambling!

>

> ~ : )

> Mommy to ~ ~ ~ AND

> (8/18/06) ~ diagnosed at 9m with 45o curve

> (Our pics are in the " " album on the last page of the photos)

>

[Guest guest]

It is so hard to wait. We had to go through the same thing.....In

order to get the MRI done, two appts with local ortho docs, waiting

for the consult at Shriners and then waiting another 6 weeks for

Matson's first cast. He was initially diagnosed in November of last

year, official diagnosis from an ped ortho in December of last year.

We weren't able to get our consult in SLC until February 07 and then

he finally got his first cast April 24, 2007. We are due back in SLC

next week for his cast removal and second cast application. So

overall, a 5 month period. He was 11 months old at initial diagnosis.

So very similar to your . He started out with a high 30 degree

curve, in April he was at 41 degrees with a 30 degree RVAD. In his

first cast they brought it down to 20-ish degrees and 18 RVAD. We are

anxious to see how it looks after his first cast is removed next

week.

That being said, I want to reassure you. When we had our consult in

SLC when he was 12 months, they assured us that waiting another two

months was acutally in his best interest so that he could hopefully

start walking prior to casting, we could get the MRI and all the

necessary testing done, and to see if his curve progressed more or

not. They said that two months will not hinder the correction

received by casting at all. He said that catching it so early at 11

months was great and that they would not have casted him any earlier

anyway, as some curves do resolve. So, I know how frustrating it is

to wait and how it feels like you are doing nothing, but do not

worry, is at the perfect time to harness her curve with early

treatment and it is much better to get the green light via the MRI

and neurology exam on the off chance that there is something else

causing her curve. For now, try to just enjoy your sweet little girl,

hug her and cuddle her lots without a cast on. And know that you are

doing all that you can for your baby and you are a wonderful mother.

Regarding the neurology appt, push your ped to get it moved up an/or

request it yourself from the neurology doc explaining this has to be

done prior to her being seen at Shriner's. Have them put you on a

cancellation list in case some of their already scheduled patients

doesn't show up or reschedules. Also, if the MRI looks good,

Shriner's may see you sooner, than waiting for the neurologist's

green light.

Your family is beautiful. is an adorable little girl. Our

little Matson is flexible like too....That picture is too

cute.

Good luck with everything and keep us posted!

Tyler 4

Matson 16 months

Lily 5 months

wrote:

>

> Greetings! First, here's a quick update and some background:

>

> , who is 10 months old TODAY (!), was diagnosed 4 weeks ago

> with a 45o curve. She has an appointment with a local (non-casting)

> ortho on July 13th and I PUSHED to get her an MRI ASAP, which is

now

> next Thursday. Per 's advice, I have sent 2 packages with

her

> x-rays and other info to Dr. at Erie and Dr. D' at

> Philly.

>

> Dr. looked over 's package last week and said he

would

> like her to have a " clear " MRI as well as an " all clear " from a ped

> neurologist before he considers her for casting. So I took

to

> see her regular pediatrician last week, who confirmed Dr. Sander's

> concerns and who has referred us to a ped neurologist. The problem

is

> that we can't get an appointment until AUGUST (we're currently

> working on getting that moved up).

>

> SO! My concern and need for insight and encouragement is this: are

> these appointments moving along too SLOWLY?! Is her curve getting

> worse with each passing day?! All I keep thinking about is " 45

> DEGREES " ! That number is like etched in my brain, and it freaks me

> out. I feel like we " should " have caught this ealier and then she

> would already be in her first cast right now. But either way, we

> should at least be moving her toward some treatment A!S!A!P!

>

> So, does anyone have some insight and/or encouragement for me while

I

> just sit and WASTE TIME waiting for these appointments?

>

> Please help me! I'm waiting for a call-back from Dr. D''s

> office (we're playing phone tag), and our pediatrician is still

> trying to get her into the ped neuorologist sooner than August. But

I

> just feel like there should be more I can do right now...

>

> I fear that when we finally get to see a casting doc, her curve is

> going to be like 60o or more and we will look back and realize that

> we wasted so much precious time! Is there any way that I can get

into

> these appointments sooner?

>

> I don't know, maybe I'm just freaking out over nothing. Thanks for

> reading this rambling!

>

> ~ : )

> Mommy to ~ ~ ~ AND

> (8/18/06) ~ diagnosed at 9m with 45o curve

> (Our pics are in the " " album on the last page of the photos)

>

[Guest guest]

, thank you for your encouraging words! Matson's case seems

very similar to 's, and I hope and pray that both of their

curves can be fully corrected.

I read Matson's story with great interest, especially when you

mentioned about them wanting to wait for him to start walking before

casting. You see, is not only not walking, but she's not even

crawling, rolling over (although she did roll over when she was 3-6

months old), or pulling herself up to a standing position. She

actually bottom-shuffles all over the place, but can not get up/down

from a sitting position by herself. When she's laying on her tummy, I

try to put her into the crawling position, but her hips flail out and

her bottom half just flops back down. I am very anxious to find out

if she has some type of joint condition.

Anyway, thanks again for your advice and encouragement. I guess I'm

just worried that we will look back and wish that we had acted

sooner. How do we know if we should be acting ASAP or not if we can't

even get in to see the doctors for 2 months?

~ : )

Mommy to ~ ~ ~ AND

(8/18/06) ~ diagnosed at 9m with 45o curve

[Guest guest]

Hi ,

<<Dr. looked over 's package last week

and said he would like her to have a " clear " MRI as

well as an " all clear " from a ped neurologist before

he considers her for casting.>>

needs to be seeing a PEDIATRIC neuroSURGEON,

not a neurologist. I hope whoever is helping you get

an appointment is making one with a neurosurgeon, not

a neurologist. Neurologists work with the brain and

disease of the brain. NeuroSURGEONS work with the

spinal cord and any abnormalities that may be

included. As you know, scoliosis in infants is not

common. A PED. neurosurgeon is the best one to help

you make sure there are no underlying causes for the

curve of the spine. Good luck.

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./group/CongenitalScoliosisSupport/

________________________________________________________________________________\

____

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

Auto Green Center.

http://autos./green_center/

[Guest guest]

Thank you very much for that advice, Carmell. After I read your post,

I immediately called our pediatrician to talk about seeing a ped

neurosurgeon instead of a ped neurologist. Our pediatrician explained

that at this point, the neurologist will be assessing her and

determining if any surgery would be needed. If she would need

surgery, then we we meet with a neurosurgeon.

Actually, I JUST got a call back from our pediatrician as I was

typing this and she got us " squeezed-in " to see a GREAT ped

neurologist out of Children's Hospital in Detroit. Our ped wanted us

to see him specifically if we could because she did her residency

there and he is so great.

So...I'm having faith in our ped that she knows what's best for our

situation right now. Thankfully, we are now scheduled for:

MRI: June 28th

Ped Neurologist: July 11th

Ped Orthopedist: July 13th

Thanks again for your input!

~ : )

Mommy to ~ ~ ~ AND

(8/18/06) ~ diagnosed at 9m with 45o curve

[Guest guest]

Hi again, ,

I'm glad your ped. is pro-active in helping you with

this. Many families don't have that luxury. I'm glad

she's getting in to see a neurologist, but honestly,

the neurologist is an unnecessary step (and expense).

You absolutely need a ped. neuroSURGEON to read the

MRI scan, not just the radiologist's report. This is

because there may be a very subtle, yet important

issue that a regular radiologist isn't trained to see.

Her spinal cord is likely fully developed and fully

formed, but can still be tethered. Many times only a

neurosurgeon knows to see this. My suggestion is to

find (with your ped's help, if necessary) a ped.

neurosurgeon who is willing to read the MRI next week

and then consult with your ped about it. They can

make an appt for to be seen later. In the very

least, a neurosurgeon needs to read the actual scan.

Not to discourage you, but, there is a family on this

list from the Detroit area who's little boy (he's 2

now) has infantile scoliosis. They could not get any

help locally for him. They ended up in SLC at

Shriners for one cast (successful) then had VEPTR

implant surgery 9 months later in SLC. They have

battled local (Detroit area) docs about his condition

from day one. It was docs in SLC (genetics, etc.) who

diagnosed him with a rare condition (Soto Syndrome).

She is finally able to convince the docs in her area

to take her son seriously. Hopefully you don't have

similar problems (I must add that the mom loves her

local ped - he's been most helpful, its just the

" specialists " who have not been at all helpful - they

even mis-diagnosed him with pnuemonia for 18 months!

It was his SPINE that was the shadow in his lung -

YIKES).

Sorry to ramble - good luck with all this! You are

doing great.

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./group/CongenitalScoliosisSupport/

________________________________________________________________________________\

____

Looking for a deal? Find great prices on flights and hotels with

FareChase.

http://farechase./

[Guest guest]

I wanted to chime in and say that Ian's MRI was not read by a neurosurgeon

originally and it was misread. We were told he had a tethered cord and it was

not the case. We ended up having the neurosurgeon read it and then found out he

was not tethered. So, yes, the neurosurgeon is an important step in the

process.

Noelle (12-2-01)

Ian (8-15-04)

Re: Re: Needing encouragement and insight for

Hi again, ,

I'm glad your ped. is pro-active in helping you with

this. Many families don't have that luxury. I'm glad

she's getting in to see a neurologist, but honestly,

the neurologist is an unnecessary step (and expense).

You absolutely need a ped. neuroSURGEON to read the

MRI scan, not just the radiologist's report. This is

because there may be a very subtle, yet important

issue that a regular radiologist isn't trained to see.

Her spinal cord is likely fully developed and fully

formed, but can still be tethered. Many times only a

neurosurgeon knows to see this. My suggestion is to

find (with your ped's help, if necessary) a ped.

neurosurgeon who is willing to read the MRI next week

and then consult with your ped about it. They can

make an appt for to be seen later. In the very

least, a neurosurgeon needs to read the actual scan.

Not to discourage you, but, there is a family on this

list from the Detroit area who's little boy (he's 2

now) has infantile scoliosis. They could not get any

help locally for him. They ended up in SLC at

Shriners for one cast (successful) then had VEPTR

implant surgery 9 months later in SLC. They have

battled local (Detroit area) docs about his condition

from day one. It was docs in SLC (genetics, etc.) who

diagnosed him with a rare condition (Soto Syndrome).

She is finally able to convince the docs in her area

to take her son seriously. Hopefully you don't have

similar problems (I must add that the mom loves her

local ped - he's been most helpful, its just the

" specialists " who have not been at all helpful - they

even mis-diagnosed him with pnuemonia for 18 months!

It was his SPINE that was the shadow in his lung -

YIKES).

Sorry to ramble - good luck with all this! You are

doing great.

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./group/CongenitalScoliosisSupport/

__________________________________________________________

Looking for a deal? Find great prices on flights and hotels with

FareChase.

http://farechase./

[Guest guest]

,

Our pediatrician also sent us to a neurologist first. However, we " wasted " two

months dealing with him and trying to get her MRI (neurologist had it scheduled

6 months out before I went crazy on them and demanded they do it in the next 30

days). He then told us we needed to see a neurosurgeon, as scoliosis was not in

his field of expertise. He was not able to get us an appt with the neurosurgeon

he wanted us to see and told me I would have to find my own! After internet

searches, consultation with our pediatrician, and countless phone calls.... I

got a hold of the nurse at one of the neurosurgeons and she agreed to take my

daughter's X-rays (multiple chest x-rays from pneumonia? that showed progression

of curve) and her MRI and show them to the neurosurgeon she worked for. He took

one look and saw us the next day! That was when we finally got some traction and

started our journey toward diagnosis and treatment. I would strongly encourage

you not to wait, but to get in with a pedi

atric neurosurgeon now and have them read the MRI. Good luck and please feel

free to e-mail if I can help.

Tina

(Mom to Sophia born 9/22/06;

COBB 36/RVAD 32;

1st casting Erie Shriners 6/7/07: COBB 29/RVAD 27)

--------- Re: Re: Needing encouragement and insight for

Hi again, ,

I'm glad your ped. is pro-active in helping you with

this. Many families don't have that luxury. I'm glad

she's getting in to see a neurologist, but honestly,

the neurologist is an unnecessary step (and expense).

You absolutely need a ped. neuroSURGEON to read the

MRI scan, not just the radiologist's report. This is

because there may be a very subtle, yet important

issue that a regular radiologist isn't trained to see.

Her spinal cord is likely fully developed and fully

formed, but can still be tethered. Many times only a

neurosurgeon knows to see this. My suggestion is to

find (with your ped's help, if necessary) a ped.

neurosurgeon who is willing to read the MRI next week

and then consult with your ped about it. They can

make an appt for to be seen later. In the very

least, a neurosurgeon needs to read the actual scan.

Not to discourage you, but, there is a family on this

list from the Detroit area who's little boy (he's 2

now) has infantile scoliosis. They could not get any

help locally for him. They ended up in SLC at

Shriners for one cast (successful) then had VEPTR

implant surgery 9 months later in SLC. They have

battled local (Detroit area) docs about his condition

from day one. It was docs in SLC (genetics, etc.) who

diagnosed him with a rare condition (Soto Syndrome).

She is finally able to convince the docs in her area

to take her son seriously. Hopefully you don't have

similar problems (I must add that the mom loves her

local ped - he's been most helpful, its just the

" specialists " who have not been at all helpful - they

even mis-diagnosed him with pnuemonia for 18 months!

It was his SPINE that was the shadow in his lung -

YIKES).

Sorry to ramble - good luck with all this! You are

doing great.

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./group/CongenitalScoliosisSupport/

__________________________________________________________

Looking for a deal? Find great prices on flights and hotels with

FareChase.

http://farechase./