Re: (unknown)

[Guest guest]

Thank you so much! I am about 2 hours from the Shriner's hospital in Erie but I  read that it's in danger of closing.  I do want to apply to one after everything I've been reading.  Is it a long process? I am so appreciative of your response.Patty (Isabella's mom, 21 months old & in a useless brace)To:

infantile_scoliosis Sent: Tuesday, May 26, 2009 9:59:38 PMSubject: Re: (unknown)

Patty,

 

I am so deeply sorry to hear of the loss of your child. I can't imagine going through that, my heart goes out to you.

 

Now, regarding your daughter, you are not alone in this! We are all here for you. Please get your child to a Mehta Method trained doctor who does EDF casting as quickly as you can. There is a list of doctors who are properly trained in this on the website, www.infantilescolio sis.org 

 

I don't see any reason why you would lose your daughter at that degree, if you act fast. It can and does progress rapidly in a lot of cases, like ours. Please call Hyatt-Montoya, her email and phone number on on the website. Ask any and all questions of the group, be a bold advocate for your child! My husband calls it "politely pushy", but get her in as soon as you can. Are you near a Shriners hospital? Some but not all do this casting. If you decide to apply to one, we have some advice that we got from that may help. Please keep us posted and know that you can do this! You're in the right place.  

 

-Heidi (Bexon's Mom, 23 months old in 2nd cast from Shriners, Salt Lake City)

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Tuesday, May 26, 2009, 6:03 PM

Hello, my name is Patty and I am new to all of this.  My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early  April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her.  I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either.  I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

 I was so upset I couldn't think straight.  The doctor told me to give him until this Friday to see if anyone could even help her and where I should go.  The thought that no one would be able to help her scared me to death.  Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first  son almost 10 years ago (nothing to do with scoliosis).  I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

Thanks so much for the information. I am feeling much better since joining this group.  It's just the unknown that is so hard. I am so happy that Noelle is doing so good, that's amazing!!!  Thanks for the prayers & the hugs. They are so appreciated esp. when you're around people that say "Oh it's just scoliosis, no big deal." I will keep you up to date and thanks again!PattyFrom: Kauffunger

To: infantile_scoliosis Sent: Tuesday, May 26, 2009 11:04:33 PMSubject: Re: (unknown)

Hi Patty,

You need to contact a Mehta doc ASAP and establish a conversation with the care coordinator and send them all your child's medical records including a copy of any x-rays and the MRI.  Establish a casting date and ask to be put on the cancellation list if you are able to leave short notice.  My Noelle was casted first at 18 months, not much younger than your child, at b/t 45-50 degrees.  I am happy to report that she is currently in her 7th cast and is at 15 degrees standing and 11 degrees in a laying x-ray....  She is doing GREAT!!!!!  Your daughter is still young enough to be helped by casting and please don't think you are going to lose her.....  You are on the right path and YOU WILL get her the help she needs.  She WILL be fine....  You just have to believe and get the ball rolling.  I am so sorry about your loss and the confusion that you are going through right now.  When Noelle was first

diagnosed I thought my world was crumbling from under my feet....  Well, my world did change (in some ways for the better, believe it or not) but it hasn't crumbled and neither will yours.  I will pray for you and feel free to ask any questions.  Hugs to you and keep me posted, Stepha

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, May 27, 2009, 1:03 AM

Hello, my name is Patty and I am new to all of this.  My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early  April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her.  I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either.  I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

 I was so upset I couldn't think straight.  The doctor told me to give him until this Friday to see if anyone could even help her and where I should go.  The thought that no one would be able to help her scared me to death.  Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first  son almost 10 years ago (nothing to do with scoliosis).  I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

It's not a long process, we were accepted in less than a week. Then we asked to be put in on the cancellation list, and stayed in touch with the care coordinator and did get a cancellation! I will always be so grateful for the weeks we saved.

The advice we got was to apply to get into the Shriner's system right away, you can apply by phone or fax. Then Fed-Ex a package addressed to the casting doctor or doctors at that hospital. Include the hospital's care coordinator's name, this is often the person who will have direct contact with the doc. You can get these names from , or ask the other parents here.

Send this along with copies of any X-rays and MRIs you have, the most recent ones being the most important. Include a short letter explaining your child's story so far, a photo of their cute face (as it's nice to put a face to a name) and one or two of their back/spine in just a diaper- so the doc can see the curve. All medical records are not needed.

Have you seen the video on the website of the doc in Rochester, NY? He looks great. It's www.infantilescoliois.org scroll down the home page and click the arrow to play the video. It looks scary, but it's not, our child is thriving in his cast.

-Heidi

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Tuesday, May 26, 2009, 6:03 PM

Hello, my name is Patty and I am new to all of this. My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her. I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either. I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

I was so upset I couldn't think straight. The doctor told me to give him until this Friday to see if anyone could even help her and where I should go. The thought that no one would be able to help her scared me to death. Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first son almost 10 years ago (nothing to do with scoliosis). I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

Patty, I am so sorry for your loss. And equally sorry you are now agonizing over your daughter's diagnosis. I understand where you are at completely, as most of us here do. My son (Cale is 20 mos) was just recently (within the past week) diagnosed with scoliosis. So we are also in the initial tornado that surrounds trying to get the best and right treatment for your baby. I think Heidi has given you great advice. There is help for her! Casting could change everything. Not all hope is lost for Isabella, as I refuse to believe that for Cale. Make those calls to Shriners and gather her medical records, you have found your alternative that your doctor was looking for. Get him/her onboard too. I'm sure having a doctor call Shriners will even push the process to go faster. And he may help someone else down the line. GL Patty, please KUPAmy A.Sent via BlackBerry by AT&TFrom: Patty Bowen Date: Tue, 26 May 2009 18:03:41 -0700 (PDT)To: <infantile_scoliosis >Subject: (unknown) Hello, my name is Patty and I am new to all of this.  My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early  April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her.  I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either.  I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.  I was so upset I couldn't think straight.  The doctor told me to give him until this Friday to see if anyone could even help her and where I should go.  The thought that no one would be able to help her scared me to death.  Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first  son almost 10 years ago (nothing to do with scoliosis).  I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

Thanks for the information.  I did see the video on the site & it did scare me.  I started looking into all of this & I don't know if I'm being stupid or not but I didn't see an email or phone number for .PattyTo: infantile_scoliosis Sent: Wednesday, May 27, 2009

1:06:27 AMSubject: Re: (unknown)

It's not a long process, we were accepted in less than a week. Then we asked to be put in on the cancellation list, and stayed in touch with the care coordinator and did get a cancellation! I will always be so grateful for the weeks we saved.

 

The advice we got was to apply to get into the Shriner's system right away, you can apply by phone or fax. Then Fed-Ex a package addressed to the casting doctor or doctors at that hospital. Include the hospital's care coordinator' s name, this is often the person who will have direct contact with the doc. You can get these names from , or ask the other parents here. 

 

Send this along with copies of any X-rays and MRIs you have, the most recent ones being the most important. Include a short letter explaining your child's story so far, a photo of their cute face (as it's nice to put a face to a name) and one or two of their back/spine in just a diaper- so the doc can see the curve. All medical records are not needed.

 

Have you seen the video on the website of the doc in Rochester, NY? He looks great. It's www.infantilescolio is.org scroll down the home page and click the arrow to play the video. It looks scary, but it's not, our child is thriving in his cast.

 

-Heidi

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Tuesday, May 26, 2009, 6:03 PM

Hello, my name is Patty and I am new to all of this.  My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early  April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her.  I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either.  I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

 I was so upset I couldn't think straight.  The doctor told me to give him until this Friday to see if anyone could even help her and where I should go.  The thought that no one would be able to help her scared me to death.  Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first  son almost 10 years ago (nothing to do with scoliosis).  I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

I am hoping that her doctor can get the ball moving faster because he was friends with someone that learned the casting method at the Erie Shriner hospital but has since moved to Rochester, NY.  I will keep your son in my prayers and it's so nice to know I have people to talk to about this that understand b/c no one around me does. PattyTo: infantile_scoliosis Sent: Wednesday, May 27, 2009 8:17:49 AMSubject: Re: (unknown)

Patty, I am so sorry for your loss. And equally sorry you are now agonizing over your daughter's diagnosis. I understand where you are at completely, as most of us here do. My son (Cale is 20 mos) was just recently (within the past week) diagnosed with scoliosis. So we are also in the initial tornado that surrounds trying to get the best and right treatment for your baby. I think Heidi has given you great advice. There is help for her! Casting could change everything. Not all hope is lost for Isabella, as I refuse to believe that for Cale. Make those calls to Shriners and gather her medical records, you have found your alternative that your doctor was looking for. Get him/her onboard too. I'm sure having a doctor call Shriners will even push the process to go faster. And he may help someone else down the line. GL Patty, please KUPAmy A.Sent via BlackBerry by AT & TFrom: Patty Bowen Date: Tue, 26 May 2009 18:03:41 -0700 (PDT)To: <infantile_scoliosis @yahoogroups. com>Subject: [infantile_scoliosi s] (unknown) Hello, my name is Patty and I am new to all of this.  My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early  April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her.  I was hopeful but it ended up that the first place made it

all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either.  I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.  I was so upset I couldn't think straight.  The doctor told me to give him until this Friday to see if anyone could even help her and where I should go.  The thought that no one would be able to help her scared me to death.  Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first  son almost 10 years ago (nothing to do with scoliosis).  I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

Hi Patty, I saw the video after our son was cast, and it scared me, too! I was glad I didn't see it before, but they cut all of that mummy looking stuff away, and you can see the cute kids in their casts next to their stories on the site. It looks like a plaster vest and you can barely notice it under a t-shirt.

The number for ISOP and Hyatt is:

or toll free:

Her email is @...

-Heidi

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Tuesday, May 26, 2009, 6:03 PM

Hello, my name is Patty and I am new to all of this. My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her. I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either. I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

I was so upset I couldn't think straight. The doctor told me to give him until this Friday to see if anyone could even help her and where I should go. The thought that no one would be able to help her scared me to death. Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first son almost 10 years ago (nothing to do with scoliosis). I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

Hi Patty

I know Steph has given you great advise (particulalry about the cancellations)

and I just wanted to add to keep on looking for treatment and keep asking

questions. My daughter Abigai has had a Scoliosis since last September and all

the doctors and physios said it was fine and would resolve itself. Finally I

pushed for an Orthopaedic Surgeon to look in March and she had curves at 50 degs

plus. At that point she was 20 months and cast shortly afterwards.

Through asking questions and speaking to lots of different doctors we soon

discovered the cast she was in was okay and holding the curve but not offering

much correction. Also it was incorrectly fitted. It has been exhausting but we

think if all goes well that Abi (she's now nearly 23 months) will have an MRI

and then a Mehta style cast put on her next Tuesday.

I so sorry for the loss of your son and can see how scary this must be. I think

the main thing is that you are aware of your daughter's curve and are now

searching for the best help for her. It sounds like you are in the US and there

are doctors there that can help (we are in the UK hence the difficulty finding

treatment)just keep on going and hopefully you will get a good cast for Isobella

soon.

warmest wishes

Sue

>

>

>

> Subject: (unknown)

> To: infantile_scoliosis

> Date: Wednesday, May 27, 2009, 1:03 AM

>

>

>

>

>

>

>

>

>

>

> Hello, my name is Patty and I am new to all of this.  My daughter was

diagnosed with scoliosis in February and unfortunately I had the month from hell

with everyone in my house getting the stomach bug twice and my daughter getting

pneumonia. Anyway, the doctor's first step was to send her for an MRI which

ended up not happening until early  April b/c they won't put a child under until

6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up

on the MRI and the doctor sent me to have a brace made for her.  I was hopeful

but it ended up that the first place made it all wrong. So, off to get the next

brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More

bad news, this brace, as well made as it was, wasn't going to do anything

either.  I think now that they knew that from what I've read online because she

was at 47 degrees when this all started & is now (I think) at 55 degrees.  I was

so upset I couldn't

> think straight.  The doctor told me to give him until this Friday to see if

anyone could even help her and where I should go.  The thought that no one would

be able to help her scared me to death.  Isabella is now 21 months old and the

thought of losing her to something like this is crushing esp, since I lost my

first  son almost 10 years ago (nothing to do with scoliosis).  I am so glad

that I found a place to speak with other people b/c you always feel like you're

alone.

>

[Guest guest]

I have gotten that reaction too, from in-laws, also the "oh my sister had scoliosis when she was 16 and she's fine now"! I know people mean well, but it's just a whole different ballgame!

Dena

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, May 27, 2009, 1:03 AM

Hello, my name is Patty and I am new to all of this. My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her. I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either. I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

I was so upset I couldn't think straight. The doctor told me to give him until this Friday to see if anyone could even help her and where I should go. The thought that no one would be able to help her scared me to death. Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first son almost 10 years ago (nothing to do with scoliosis). I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

I must chime in on this too. I have had so many people, friends and family do this it makes me want to throttle someone. It is one of the most life changing events there is. In our case, had we not gotten a cancellation and moved up on the casting list, our son would, most likely, be facing a lifetime of surgeries. As we speak, he's climbing on our coffee table, getting into trouble like any other 23 month old. For this, I am grateful. And for all of us, when times get low, I found out today someone I went to grade school and college with died of cancer. 40 and a Father. As difficult as our journey is, at least we get to watch our children grow up and be there for them.

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, May 27, 2009, 1:03 AM

Hello, my name is Patty and I am new to all of this.  My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early  April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her.  I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either.  I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

 I was so upset I couldn't think straight.  The doctor told me to give him until this Friday to see if anyone could even help her and where I should go.  The thought that no one would be able to help her scared me to death.  Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first  son almost 10 years ago (nothing to do with scoliosis).  I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

Hi Patty,I don't know about the different hospitals, since we go to SLC. But I would also phone Erie and talk with them. Go to both facilities and see which you prefer.Also, one thing you might want to consider is your financial situation and insurance coverage. We were trying to chose between Shriners SLC and Loma for our daughter, we ended up at Shriners since they could cast us 7 weeks sooner. Shriners doesn't charge anything for their services, and if we had gone to Loma we would have had to use our insurance. I know there have been some billing issues and getting insurance to cover the 'spinal manipulation', this is something you don't want to have to deal with, if you can avoid it.LizSubject: (unknown)To: infantile_scoliosis Date: Saturday, May 30, 2009, 9:35 PM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to

go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move now before she gets any worse.All help appreciated,Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Hi Patty,

Piggybacking on Liz's message here...I think Liz make a great point!! ~KristaJack's Mom, Jack is 22 months old in his 3rd cast from Shriners Hospital in Salt Lake City, Utah

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Saturday, May 30, 2009, 9:35 PM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

I have been on here for many years, before Dr. left Erie Shriners and everyone who was on the list at the time who went to Erie, couldn't stop talking about him. He was very good and he was one of the very first docs to be trained in Mehta if I'm not mistaken.

Betty

Just a lurker on the list. I'm an adult who has Scoliosis. Had my first spinal fusion at age 9, second one age 12. Any questions, just ask.

To: infantile_scoliosis Sent: Saturday, May 30, 2009 11:35:28 PMSubject: (unknown)

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Hi Betty,

How are you doing now, years after the surgeries?Heidi, Bexon's Mama, (23 months old, in 2nd cast from Salt Lake City Shriners, currently down from 61 degrees to 29)

Subject: Re: (unknown)To: infantile_scoliosis Date: Sunday, May 31, 2009, 11:42 AM

I have been on here for many years, before Dr. left Erie Shriners and everyone who was on the list at the time who went to Erie, couldn't stop talking about him. He was very good and he was one of the very first docs to be trained in Mehta if I'm not mistaken.

Betty

Just a lurker on the list. I'm an adult who has Scoliosis. Had my first spinal fusion at age 9, second one age 12. Any questions, just ask.

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Saturday, May 30, 2009 11:35:28 PMSubject: [infantile_scoliosi s] (unknown)

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Hi Patty,

Where do you live? We went to Erie for our son and followed the doc there to Rochester, but that was mainly because the doc who took his place was just temporary and we weren't sure he bought into everything about ET. That isn't true of the doc who casts at Erie now. It is a wonderful place. I loved it. If you want more specifics or have questions please feel feel to email me!

Both places are wonderful. You can't go wrong with either!

Jill and

Subject: (unknown)To: infantile_scoliosis Date: Sunday, May 31, 2009, 12:35 AM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Thanks for the advice Beth.  I am from Pittsburgh and so hope I can get into Erie b/c I'm not good at driving long distances because I have bad hips but I'll do what I have to do for my little girl.  I don't know you're story since I'm new so can you tell me a little about your son?Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do nextTo: infantile_scoliosis Sent: Sunday, May 31, 2009 7:22:39 AMSubject: Re: (unknown)

Patty,First of all I love you signature.  I personally know that on a young child those braces stink.  They put my son in one when he was just six months, sounds silly to me.  Where do you live? We are in northern Indiana and are going to try to go to the Shriners in Chicago, it is very close to us. Well I think what you should do is what told me to do.  HAve you doctor send your information to several doctors that are trained in Mehta casting and go to the one that can take you first.  Often times when you go to a Shriners Hospitalthey will even pay for your lodging. Good luck.Beth Rettinger

Mother Of Rettinger

Not Yet in CastFrom: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Sunday, May 31, 2009, 12:35 AM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y.  I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally).  I don't know if I should travel double the distance to see   or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to

go so much farther, esp. when I would have to pass Erie on my way to Rochester.  I just want the best for my daughter & I need to make a move now before she gets any worse.All help appreciated,Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Hi Patty!

We go to Rochester and love the doc you were referred to.... Feel free to e-mail me any questions about Rochester and Erie.... Our first trip was in Erie.... Steph

Subject: (unknown)To: infantile_scoliosis Date: Sunday, May 31, 2009, 4:35 AM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Thanks Liz!  In all this craziness, I didn't even think about the insurance aspect of it & whether it would be covered or not.  I've already had 2 braces made & don't know if those were covered.  The first one I would fight though b/c it was made totally wrong. Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do nextTo: infantile_scoliosis Sent: Sunday, May 31, 2009 2:15:39 PMSubject: Re: (unknown)

Hi Patty,I don't know about the different hospitals, since we go to SLC. But I would also phone Erie and talk with them. Go to both facilities and see which you prefer.Also, one thing you might want to consider is your financial situation and insurance coverage. We were trying to chose between Shriners SLC and Loma for our daughter, we ended up at Shriners since they could cast us 7 weeks sooner. Shriners doesn't charge anything for their services, and if we had gone to Loma we would have had to use our insurance. I know there have been some billing issues and getting insurance to cover the 'spinal manipulation' , this is something you don't want to have to deal with, if you can avoid it.LizFrom: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Saturday, May 30, 2009, 9:35 PM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y.  I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally).  I don't know if I should travel double the distance to see   or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to

go so much farther, esp. when I would have to pass Erie on my way to Rochester.  I just want the best for my daughter & I need to make a move now before she gets any worse.All help appreciated,Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Thank you! Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do nextTo: infantile_scoliosis Sent: Sunday, May 31, 2009 2:37:51 PMSubject: Re: (unknown)

Hi Patty,

Piggybacking on Liz's message here...I think Liz make a great point!!  ~KristaJack's Mom, Jack is 22 months old in his 3rd cast from Shriners Hospital in Salt Lake City, Utah

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Saturday, May 30, 2009, 9:35 PM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y.  I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally).  I don't know if I should travel double the distance to see   or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester.  I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

I agree you forget to think about insurance. I remember thinking I will mortgage my home to get my daughter the treatment she needs, but this process is much easier when I don't have to worry about insurance, pre-approvals, co-pays and deductibles. I do know one Mom who has an HMO and when the hospital changed the billing code when they got the correct casting frame, they no longer wanted to cover the procedure and she had to get 'pre-approval' for EACH cast change. And they wouldn't tell her until a week or two before the cast change. If it was denied they told her she would have to appeal etc. So she was stressed out and you really don't need that, if you can avoid it.Liz - Mom to Keira, 3 yrs old in a brace, taking a "cast-break" after 1 year in casts at SLCFrom: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Saturday, May 30, 2009, 9:35 PM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to

go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move now before she gets any worse.All help appreciated,Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Hi Patty,

Get your application in to Shriners as soon as possible, you can often apply by phone or fax. Then call or email the care coordinator. Does anyone know the name and # of the one there? would have that info.Heidi, Bexon's Mama, (23 months old, in 2nd cast from Salt Lake City Shriners, currently down from 61 degrees to 29)

Subject: (unknown)To: infantile_scoliosis Date: Monday, June 1, 2009, 11:37 AM

I am looking into both Erie Shriners (preferred) & Rochester and wanted to know how each place handles the casting. Is it a one day process or is it inpatient? Should my first step with Erie be to call the care coordinator? Should I fill out an application or call? Any and all help is appreciated.

Thanks,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Yes, your first step at Shriners would be to call the care coordinator. They will walk you through it and tell you what you need to send (xrays, mri report etc.) Then the coordinator will let you know what the next step is. They are great there- so kind, plus you don't have to deal with any insurance hassles. Do you need the number?

Jill

Subject: (unknown)To: infantile_scoliosis Date: Monday, June 1, 2009, 2:37 PM

I am looking into both Erie Shriners (preferred) & Rochester and wanted to know how each place handles the casting. Is it a one day process or is it inpatient? Should my first step with Erie be to call the care coordinator? Should I fill out an application or call? Any and all help is appreciated.

Thanks,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

I can second ALL of that! You want to do the very best thing for your child, and not even worry about money or insurance. I have to say that I am VERY happy with the choice to go to Shriners from many reasons. ~KristaJack's Mom, Jack is 22 months old in his 3rd cast from Shriners Hospital in Salt Lake City, Utah

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Saturday, May 30, 2009, 9:35 PM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Saturday, May 30, 2009, 9:35 PM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

If I'm not mistaken, there are several care coordinators there? The one who deals with us is named Gail. I don't know how it is for everyone but for jesse how the process went was our pediatrician contacted Erie Shriners and set up the appt, we didn't have to apply to be seen. I think our pedi passed along the sense of urgency to them because we got in immediately. They mailed us an info packet to fill out and bring to our appt and told us to bring copies of all xrays and mri's with us. We went to the appt and met the dr (who is outstanding btw), he discussed everything with me in depth and he set jesse up to be casted the following month when he came back to erie. (the dr is from philly shriners and comes to erie for casting)It was a one day procedure. (sp?) we had to be there at 6:30, jesse went in at 11:00

and we left around 5pm.We also are from western Pa and are 2 hrs from Erie. If that's where you choose to go, I think you'll be amazed at the kindness and support your child and family receive. If you have any questions or need phone numbers that i have, feel free to contact me. Good luck and i wish all the best for your child.crystal

mom to jesse(bday: 8/22/07)

**currently in 1st cast from Erie Shriners, next cast change June 10

Subject: (unknown)To: infantile_scoliosis Date: Monday, June 1, 2009, 2:37 PM

I am looking into both Erie Shriners (preferred) & Rochester and wanted to know how each place handles the casting. Is it a one day process or is it inpatient? Should my first step with Erie be to call the care coordinator? Should I fill out an application or call? Any and all help is appreciated. Thanks, Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next