What's the normal time line?

[Guest guest]

Hi,

I am just starting this journey with my daughter, Makenna. We got the

confirmatory x-rays on August 12th of the scoliosis. She is currently in a

brace, but I am trying to get her in to a casting program. I have submitted all

the necessary paperwork and have spoken to the people in Chicago. I know that

the application has made it there and has been sent to the chief of staff. Any

ideas on how long it could take before I hear back from them? We caught her

scoliosis very early and for that I am grateful, and I also realize that there

are lots of others who need treatment much sooner than her, but as her mom - I

want to be able to fight for her. I just wondered how long it took for some of

you to get your first cast date so that I had an idea what to expect.

It's frustrating at this point, because I feel like I have done everything I can

do...all that's left is to wait!

Amy

mom to Makenna 2 1/2 yrs old; HGPPS.

[Guest guest]

Hi Amy,

I'm not in the Chicago area, but I am also new to this. I dont have much info but I know other parents here that have taken there children to Shriners in Chicago.

You are doing the right thing by being aggressive and fighting for her! I had suspected something was wrong for a while and finally it was confirmed on 8/28/09, my daughter 98 mnths) has IS. The pediatric ortho told me to wait 6 mnths and see. She had a 23 degree curve. I was not comfortable at all with waiting so I contacted Shriners in Philly, PA (with the help of parents on this website). I actually was very lucky, I called last thurs 9/10 and was able to get in yesterday 9/15. They told me she has all the indicators that her IS is prgressing and she need a brace and then probably casting. I didnt have much ppwk to fill out and they (the dr's and staff) were very thorough.

I guess each experience is different with each facility but I definatly would continue to push. This is your daughter we're talking about so your doing nothing wrong by being aggressive. Good luck to you

Melinda

Mommy of Marlycia 8 mnths, Natalya 22 mnths

Scranton, PA

What's the normal time line?

Hi,I am just starting this journey with my daughter, Makenna. We got the confirmatory x-rays on August 12th of the scoliosis. She is currently in a brace, but I am trying to get her in to a casting program. I have submitted all the necessary paperwork and have spoken to the people in Chicago. I know that the application has made it there and has been sent to the chief of staff. Any ideas on how long it could take before I hear back from them? We caught her scoliosis very early and for that I am grateful, and I also realize that there are lots of others who need treatment much sooner than her, but as her mom - I want to be able to fight for her. I just wondered how long it took for some of you to get your first cast date so that I had an idea what to expect.It's frustrating at this point, because I feel like I have done everything I can do...all that's left is to wait!Amy mom to Makenna 2 1/2 yrs old; HGPPS.

[Guest guest]

Amy,

If you haven't already - call Dr. S's Care Cordinator. I can't remember her name right now. She'll be able to help spend things along. She's very nice and understands the need to get in PIS kids ASAP.

Can someone that goes to Chicago email Amy the CC's name and phone? ~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis From: mindylee1@...Date: Wed, 16 Sep 2009 13:54:23 -0400Subject: Re: What's the normal time line?

Hi Amy,

I'm not in the Chicago area, but I am also new to this. I dont have much info but I know other parents here that have taken there children to Shriners in Chicago.

You are doing the right thing by being aggressive and fighting for her! I had suspected something was wrong for a while and finally it was confirmed on 8/28/09, my daughter 98 mnths) has IS. The pediatric ortho told me to wait 6 mnths and see. She had a 23 degree curve. I was not comfortable at all with waiting so I contacted Shriners in Philly, PA (with the help of parents on this website). I actually was very lucky, I called last thurs 9/10 and was able to get in yesterday 9/15. They told me she has all the indicators that her IS is prgressing and she need a brace and then probably casting. I didnt have much ppwk to fill out and they (the dr's and staff) were very thorough.

I guess each experience is different with each facility but I definatly would continue to push. This is your daughter we're talking about so your doing nothing wrong by being aggressive. Good luck to you

Melinda

Mommy of Marlycia 8 mnths, Natalya 22 mnths

Scranton, PA

What's the normal time line?

Hi,I am just starting this journey with my daughter, Makenna. We got the confirmatory x-rays on August 12th of the scoliosis. She is currently in a brace, but I am trying to get her in to a casting program. I have submitted all the necessary paperwork and have spoken to the people in Chicago. I know that the application has made it there and has been sent to the chief of staff. Any ideas on how long it could take before I hear back from them? We caught her scoliosis very early and for that I am grateful, and I also realize that there are lots of others who need treatment much sooner than her, but as her mom - I want to be able to fight for her. I just wondered how long it took for some of you to get your first cast date so that I had an idea what to expect.It's frustrating at this point, because I feel like I have done everything I can do...all that's left is to wait!Amy mom to Makenna 2 1/2 yrs old; HGPPS.

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[Guest guest]

Hi Amy,

It's your fellow Indy Mom. I' so glad to hear that you are moving forward with

exploring Mehta casting as an option for your daughter. For us the timeline was

about 2 weeks from when we spoke with the care coordinator to our actual appt.

That was for both Shriners Erie when we had our first cast and for Shriners

Chicago. It was also about a week and a half from talking with the nurse to our

appt. with the casting doc at Childrens Birmingham, AL. I know we got lucky

though, as some folks have had to wait longer. But the longest I've heard is 4-6

weeks. The shortest was 2-3 days. The best thing you can do is get ahold of the

care coordinator. If you have decided to go with Chicago, I can e-mail you that

info off-line. I would also still encourage you to send a packet to Salt Lake

City for their review and ask for a remote consult (not actually having to go

there in person but have them look at her x-rays and MRI and give their opinion

on treatment options), given her rare underlying condition. Please let me know

if there is anything I can do to help. You will continue to be in my prayers.

Tina (Sophia's Mom)

> What's the normal time line?

>

>

> Hi,

>

> I am just starting this journey with my daughter, Makenna. We got the

confirmatory x-rays on August 12th of the scoliosis. She is currently in a

brace, but I am trying to get her in to a casting program. I have submitted all

the necessary paperwork and have spoken to the people in Chicago. I know that

the application has made it there and has been sent to the chief of staff. Any

ideas on how long it could take before I hear back from them? We caught her

scoliosis very early and for that I am grateful, and I also realize that there

are lots of others who need treatment much sooner than her, but as her mom - I

want to be able to fight for her. I just wondered how long it took for some of

you to get your first cast date so that I had an idea what to expect.

> It's frustrating at this point, because I feel like I have done everything I

can do...all that's left is to wait!

>

> Amy

> mom to Makenna 2 1/2 yrs old; HGPPS.

>

[Guest guest]

>

> Hi Amy,

> It's your fellow Indy Mom. I' so glad to hear that you are moving forward with

exploring Mehta casting as an option for your daughter. For us the timeline was

about 2 weeks from when we spoke with the care coordinator to our actual appt.

That was for both Shriners Erie when we had our first cast and for Shriners

Chicago. It was also about a week and a half from talking with the nurse to our

appt. with the casting doc at Childrens Birmingham, AL. I know we got lucky

though, as some folks have had to wait longer. But the longest I've heard is 4-6

weeks. The shortest was 2-3 days. The best thing you can do is get ahold of the

care coordinator. If you have decided to go with Chicago, I can e-mail you that

info off-line. I would also still encourage you to send a packet to Salt Lake

City for their review and ask for a remote consult (not actually having to go

there in person but have them look at her x-rays and MRI and give their opinion

on treatment options), given her rare underlying condition. Please let me know

if there is anything I can do to help. You will continue to be in my prayers.

> Tina (Sophia's Mom)

>

> > What's the normal time line?

> >

> >

> > Hi,

> >

> > I am just starting this journey with my daughter, Makenna. We got the

confirmatory x-rays on August 12th of the scoliosis. She is currently in a

brace, but I am trying to get her in to a casting program. I have submitted all

the necessary paperwork and have spoken to the people in Chicago. I know that

the application has made it there and has been sent to the chief of staff. Any

ideas on how long it could take before I hear back from them? We caught her

scoliosis very early and for that I am grateful, and I also realize that there

are lots of others who need treatment much sooner than her, but as her mom - I

want to be able to fight for her. I just wondered how long it took for some of

you to get your first cast date so that I had an idea what to expect.

> > It's frustrating at this point, because I feel like I have done everything

I can do...all that's left is to wait!

> >

> > Amy

> > mom to Makenna 2 1/2 yrs old; HGPPS.

> >

>

Hi, Amy

We will be going to Chicago,as well. I found out last week that her

immunization record was received and she was accepted. We are still waiting on

the letter with our appt.date, but it shouldn't take long to get in. After they

got all of her paperwork it was just a matter of days before I knew she had been

accepted. You can call the app. cordinator, she is very nice. She shouldn't have

a problem checking on it for you. If you would like to email me off the group, I

can give you all the info. that I know. (which may not be any more than you

know, but it would be great for me to talk with another family going to the

same hospital and using the same doctor.)