RE: Re: neuroblastoma (remission), now scoliosis

[Guest guest]

Okay - forgive my bossiness, but we're all pretty passionate about

this and want to help you

Right now, sign off and call the Mehta-trained doctor. If they don't

have the doctor available, ask for his nurse, ask for a resident that

works with him - ANYONE. Tell them you NEED to get in ASAP. If need

be, travel to another Shriner's that does Mehta cast.

Jack's curve was 70° when he was diagnosed and Miss Mehta herself was

confident that casting would help him. So, it's not always " just " for

lower curves. Also, we're only in cast number 2 but have had no

slipping. It's over the shoulders like a tank top and very firm

around the back, sides, and hips - there isn't room for slipping up.

It is IMPERATIVE that they do the casting on a proper frame. They put

the baby's chin/head in traction and their pelvis and sort of pull

them gently apart to straighten it out. He has to do this on a

pediatric frame for the best results and with a curve with numbers

that high the best equipment and the best-trained physicians are

totally necessary and worth fighting for. It will give him the best

odds.

Also, don't panic about the difference in numbers. There is a

variance of up to 5 degrees in each direction. It may not have been

deteriorating that quickly, but if it is - all the more reason to get

him seen by the other doctor. And dont worry about the rotation -

there usually are not numbers to define that, in my experience.

Here's what I did - I called our Shriner's - was put on hold, said no

one was available, I'd say " Anyone else available? " I pressed - over

and over - I need him to be seen AS SOON AS POSSIBLE - he has

progressive scoliosis and his curve is ALREADY 70° (in Jack's case) -

I cannot wait any longer. Then, are there any cancellations? Is

there a cancellation list?

I'll see if I can find out any information for you on this doctor's

contact info. We're fighting for you guys, too! Come and vent and

brainstorm ANY time

Sandi

[Guest guest]

Is this the contact info you have for Dr. Kishan?

3030 Childrens Way # 410

San Diego, CA 92123

[Guest guest]

You know, I'm not sure where Jack's is - I think it's 5th down, but

his is a right thoracic curve as well.

I'm SO glad to hear that you'll hear back soon. Sometimes people just

need a fire lit under their bums

Angel flights will help you with transport, if you need to go to Salt

Lake. That would be my first pick, coming from San Diego. But, when

they call back - see if they can get a message to the local doctor and

see if he can call you in the meantime. That way you can explain to

him the situation, see if he can receive JPGs of the x-rays or if you

can send them somewhere that you'd get them sooner at least to tell

you if you guys are even candidates. It can be a few weeks to get

booked in the operating room for the cast no matter where you go, but

salt lake shouldn't be *too* far - and they're one of the best, from

what I understand. I believe that's where takes her daughter.

Otherwise, Southwest flights are pretty cheap if he can still fly on

your lap.

But, really - like you said, even having him evaluated out of town

isn't necessarily going to get the process going any faster. So,

maybe waiting for the local doc and just continuing that fight with

the local hospital is the best way.

Keep us updated!

Sandi

[Guest guest]

Oh, - I'm SO glad!!! This has been weighing heavily on my heart

and mind today and I'm just so relieved. I feel such a connection to

you and already! YOU did this! What a great mom you are to

your son, fighting for him and advocating for him. Bravo!

Happy Thanksgiving to you!

Sandi

[Guest guest]

julie,

that's great news! congrats on getting the appt. i can't wait to

see some pictures!

my best,

deshea

> SANDI - From the bottom of my heart, thank you!! I just got the call

> back. I have an appointment for Dec. 12th, and he's double-booking to

> get me in. He has reviewed my letter and MRI dictated report and

> thinks is okay to wait until then. It makes me a little

> nervous, but...

>

> Apparently, the appointment person received a response late last night

> and had yet to call me...so another person tracked it down and she

> called me back right away. I thought I had made it very clear of how

> urgently I needed to get on Dr. Kishan's schedule.....so thank you,

> Sandi...I would not have made that phone call without your 'bossiness'

> as you so politely put it. I guess I can relax now & continue his

> PT exercises and 'theratogs.'

>

> Thanks for everyone's support through this. I have started my own

> spreadsheet so that I can understand what is going on with each of you

> and your children. I will keep you in my prayers.

>

> I will add some pictures of in a few minutes.

>

> Best

>

>

>

> >

> > You know, I'm not sure where Jack's is - I think it's 5th down, but

> > his is a right thoracic curve as well.

> >

> > I'm SO glad to hear that you'll hear back soon. Sometimes people

> just

> > need a fire lit under their bums

> >

> > Angel flights will help you with transport, if you need to go to

> Salt

> > Lake. That would be my first pick, coming from San Diego. But, when

> > they call back - see if they can get a message to the local

> doctor and

> > see if he can call you in the meantime. That way you can explain to

> > him the situation, see if he can receive JPGs of the x-rays or if

> you

> > can send them somewhere that you'd get them sooner at least to tell

> > you if you guys are even candidates. It can be a few weeks to get

> > booked in the operating room for the cast no matter where you go,

> but

> > salt lake shouldn't be *too* far - and they're one of the best, from

> > what I understand. I believe that's where takes her

> daughter.

> > Otherwise, Southwest flights are pretty cheap if he can still fly on

> > your lap.

> >

> > But, really - like you said, even having him evaluated out of town

> > isn't necessarily going to get the process going any faster. So,

> > maybe waiting for the local doc and just continuing that fight with

> > the local hospital is the best way.

> >

> > Keep us updated!

> > Sandi

> >

>

>

>

[Guest guest]

,

So glad to hear you were able to get him an appt with one of the Mehta trained

docs. I know how frustrating it is, especially when you know time is a critical

factor. is lucky to have such a great Mom that will fight for the best

care for him! I saw the pics you posted and he is such a cutie!! Good luck and

keep us posted-

Tina (Mom to Sophia 14 months, in 3rd cast)

Re: neuroblastoma (remission), now scoliosis

SANDI - From the bottom of my heart, thank you!! I just got the call

back. I have an appointment for Dec. 12th, and he's double-booking to

get me in. He has reviewed my letter and MRI dictated report and

thinks is okay to wait until then. It makes me a little

nervous, but...

Apparently, the appointment person received a response late last night

and had yet to call me...so another person tracked it down and she

called me back right away. I thought I had made it very clear of how

urgently I needed to get on Dr. Kishan's schedule.....so thank you,

Sandi...I would not have made that phone call without your 'bossiness'

as you so politely put it. I guess I can relax now & continue his

PT exercises and 'theratogs.'

Thanks for everyone's support through this. I have started my own

spreadsheet so that I can understand what is going on with each of you

and your children. I will keep you in my prayers.

I will add some pictures of in a few minutes.

Best

>

> You know, I'm not sure where Jack's is - I think it's 5th down, but

> his is a right thoracic curve as well.

>

> I'm SO glad to hear that you'll hear back soon. Sometimes people just

> need a fire lit under their bums

>

> Angel flights will help you with transport, if you need to go to Salt

> Lake. That would be my first pick, coming from San Diego. But, when

> they call back - see if they can get a message to the local doctor and

> see if he can call you in the meantime. That way you can explain to

> him the situation, see if he can receive JPGs of the x-rays or if you

> can send them somewhere that you'd get them sooner at least to tell

> you if you guys are even candidates. It can be a few weeks to get

> booked in the operating room for the cast no matter where you go, but

> salt lake shouldn't be *too* far - and they're one of the best, from

> what I understand. I believe that's where takes her daughter.

> Otherwise, Southwest flights are pretty cheap if he can still fly on

> your lap.

>

> But, really - like you said, even having him evaluated out of town

> isn't necessarily going to get the process going any faster. So,

> maybe waiting for the local doc and just continuing that fight with

> the local hospital is the best way.

>

> Keep us updated!

> Sandi

>

[Guest guest]

oh, I agree! He's SO cute!!

Sandi

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

[Guest guest]

Hello:

My daughter has had both types of casting done and I would strongly recommend

getting a Mehta cast done for 2 reasons.

1. The non-Mehta style cast is very restrictive. Our daughter had her leg

" anchored " in the first series of casts and her arm in the second. She adapted

well to both, but after getting a Mehta cast we realize how much more

comfortable she is in the Mehta style cast.

2. If the non-Mehta style cast doesn't work you will never forgive yourself for

not starting with a Mehta cast and wasting precious growing time.

I'd be happy to answer more questions if you have them.

________________________________

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of babymaxpd

Sent: Monday, November 26, 2007 9:06 PM

To: infantile_scoliosis

Subject: Re: neuroblastoma (remission), now scoliosis

Hi ,

Welcome. Max had both shoulders casted in his first cast. And his

2nd cast had 1 shoulder casted. We were told this was used as

anchors. MAx had the most correction with these 2 casts, but it is

not uncommon to get the most correction in a Mehta style 1st cast.

Casts 3-8 have all been Mehta style casts and I have noticed they do

tend to become more loose quicker.

As far as casting results, not all curves are the same and may not

all be corrected with casting.

I'm happy to hear you were able to contact doctors for appointments.

Good Luck.

Aekta

>

> Hello,

>

> I'm new to this site. My story in short: 15 m.o. son diagnosed

with

> neuroblastoma at 2.5 months treated successfully (so far) with

> chemotherapy and surgery, now with thoracic scoliosis. We're

looking

> at casting in the next few weeks and I'm searching for more

> information.

>

> Has anyone has experience with Dr. Newton at Children's

Hospital

> in San Diego, CA? Has anyone has experience with his casts that

> include arm and/or leg extensions? I'm hoping that my son ()

> could wear a cast without these extensions so that he can still

sit,

> crawl, and be a happier kid.

>

> My son's cobb angle is about 60 degrees at around T4 with possibly

> some kyphosis. Is there anyone in a similar situation? If so,

please

> e-mail me.

>

> I'm going for a second visit to Dr. Newton today with many

questions.

> I would like to get a second opinion from Dr. Kishan at Loma

,

> who trained with Min Mehta's method, but I can't seem to get a

> response from him.

>

> Thanks!

>

>