Introduction

[Guest guest]

Does he keep go trough levels on the IV route?

Ursula

On Jul 30, 2011, at 10:04 AM, " Molly " <sds44001@...> wrote:

> Kim,

> We did try the subq route; however, my son is tall and thin and unfortunately

doesn't have a whole lot of fat tissue so it was really uncomfortable for him.

He's 5'11 " and weighs all of #138. We used two sites but they got uncomfortably

large. He was a trooper and tried it for about 2 months. He actually prefers

IVIG: he used Emla and his nurse was AMAZING. He was usually done within 1 1/2

hours.

>

> He was just diagnosed with a sinus infection so I'm curious to see where this

goes.

>

>

> > >

> > > > Good morning, at least in Ohio it's morning.

> > > >

> > > > My name is and my 17 year old son was diagnosed with Hypogam

> > when he was 6 years old. He recieved IVIG every three weeks until he was

> > about 10 when we 'trialed' him off, unsuccessfully. He then continued the

> > IVIG again until March of 2010 when he was again 'trialed' off. This year,

> > he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG

> > level was about 573, I'm using memory on this one. His post injection IGG

> > level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if

> > that's what it's called. Since his last IVIG, he has had one pneumonia and

> > one sinus infection both being treated successfully with one round of

> > antibiotics. Now, his immunologist would like to initiate IVIG again but I'm

> > against it. So, we decided to wait to reasses his levels in two months. It's

> > very confusing because his immunologist initialled diagnosed him with

> > Hypogamm and when he was assessed this year, she said he would be labeled

> > CVID if he hadn't mount ed an immunity to any or less than 2 of the

> > pneumococcals....confusing....LOL

> > > >

> > > > He wants to enter the military and with this diagnosis, his dreams are

> > forever squashed.

> > > >

> > > > On a side note, are there any other almost adults with Hypogamm? I think

> > it would help my son a TON to speak with someone. He's really having a tough

> > time with this. We thought he had a kidney disease but it appears as though

> > that isn't the case. If there's an almost adult who would be willing to

> > talk/ text another almost adult, please let me know...

> > > >

> > > > Thank you for everything!!!

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

I have a skinni mini too and it took a bit of tinkering to get subq to work for

us. Did you try shorter softsets? 6mm? Anything else for my daughter was just

torture, especially the evans sets where the needle stays in the whole time. We

also run the pump really slow, 10mm hr and just run it over night. I will admit

though the sites can burn/itch the first few months while the tissue adapts to

the product but some are more painful then others. We use Gammunex rather then

Viva or the new one who's name escapes me at the moment, that stuff can be

really caustic on the tissues from what I understand due to its concentration.

________________________________

From: Molly <sds44001@...>

Sent: Sat, July 30, 2011 7:04:17 AM

Subject: Re: introduction

Kim,

We did try the subq route; however, my son is tall and thin and unfortunately

doesn't have a whole lot of fat tissue so it was really uncomfortable for him.

He's 5'11 " and weighs all of #138. We used two sites but they got uncomfortably

large. He was a trooper and tried it for about 2 months. He actually prefers

IVIG: he used Emla and his nurse was AMAZING. He was usually done within 1 1/2

hours.

He was just diagnosed with a sinus infection so I'm curious to see where this

goes.

> >

> > > Good morning, at least in Ohio it's morning.

> > >

> > > My name is and my 17 year old son was diagnosed with Hypogam

> when he was 6 years old. He recieved IVIG every three weeks until he was

> about 10 when we 'trialed' him off, unsuccessfully. He then continued the

> IVIG again until March of 2010 when he was again 'trialed' off. This year,

> he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG

> level was about 573, I'm using memory on this one. His post injection IGG

> level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if

> that's what it's called. Since his last IVIG, he has had one pneumonia and

> one sinus infection both being treated successfully with one round of

> antibiotics. Now, his immunologist would like to initiate IVIG again but I'm

> against it. So, we decided to wait to reasses his levels in two months. It's

> very confusing because his immunologist initialled diagnosed him with

> Hypogamm and when he was assessed this year, she said he would be labeled

> CVID if he hadn't mount ed an immunity to any or less than 2 of the

> pneumococcals....confusing....LOL

> > >

> > > He wants to enter the military and with this diagnosis, his dreams are

> forever squashed.

> > >

> > > On a side note, are there any other almost adults with Hypogamm? I think

> it would help my son a TON to speak with someone. He's really having a tough

> time with this. We thought he had a kidney disease but it appears as though

> that isn't the case. If there's an almost adult who would be willing to

> talk/ text another almost adult, please let me know...

> > >

> > > Thank you for everything!!!

> > >

> > >

> >

> >

> >

[Guest guest]

I have a skinni mini too and it took a bit of tinkering to get subq to work for

us. Did you try shorter softsets? 6mm? Anything else for my daughter was just

torture, especially the evans sets where the needle stays in the whole time. We

also run the pump really slow, 10mm hr and just run it over night. I will admit

though the sites can burn/itch the first few months while the tissue adapts to

the product but some are more painful then others. We use Gammunex rather then

Viva or the new one who's name escapes me at the moment, that stuff can be

really caustic on the tissues from what I understand due to its concentration.

________________________________

From: Molly <sds44001@...>

Sent: Sat, July 30, 2011 7:04:17 AM

Subject: Re: introduction

Kim,

We did try the subq route; however, my son is tall and thin and unfortunately

doesn't have a whole lot of fat tissue so it was really uncomfortable for him.

He's 5'11 " and weighs all of #138. We used two sites but they got uncomfortably

large. He was a trooper and tried it for about 2 months. He actually prefers

IVIG: he used Emla and his nurse was AMAZING. He was usually done within 1 1/2

hours.

He was just diagnosed with a sinus infection so I'm curious to see where this

goes.

> >

> > > Good morning, at least in Ohio it's morning.

> > >

> > > My name is and my 17 year old son was diagnosed with Hypogam

> when he was 6 years old. He recieved IVIG every three weeks until he was

> about 10 when we 'trialed' him off, unsuccessfully. He then continued the

> IVIG again until March of 2010 when he was again 'trialed' off. This year,

> he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG

> level was about 573, I'm using memory on this one. His post injection IGG

> level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if

> that's what it's called. Since his last IVIG, he has had one pneumonia and

> one sinus infection both being treated successfully with one round of

> antibiotics. Now, his immunologist would like to initiate IVIG again but I'm

> against it. So, we decided to wait to reasses his levels in two months. It's

> very confusing because his immunologist initialled diagnosed him with

> Hypogamm and when he was assessed this year, she said he would be labeled

> CVID if he hadn't mount ed an immunity to any or less than 2 of the

> pneumococcals....confusing....LOL

> > >

> > > He wants to enter the military and with this diagnosis, his dreams are

> forever squashed.

> > >

> > > On a side note, are there any other almost adults with Hypogamm? I think

> it would help my son a TON to speak with someone. He's really having a tough

> time with this. We thought he had a kidney disease but it appears as though

> that isn't the case. If there's an almost adult who would be willing to

> talk/ text another almost adult, please let me know...

> > >

> > > Thank you for everything!!!

> > >

> > >

> >

> >

> >

[Guest guest]

Well sorry that did not work. I am glad that he gets done that quick..my girls

was 8hour from start to finsh with ivig…it does show that one might work for

one better then the other. Hope u find something to help him get over his

problems..

From: [mailto: ] On Behalf Of Ursula

Holleman

Sent: Saturday, July 30, 2011 10:29 AM

Subject: Re: Re: introduction

Does he keep go trough levels on the IV route?

Ursula

On Jul 30, 2011, at 10:04 AM, " Molly " <sds44001@...

<mailto:sds44001%40hotmail.com> > wrote:

> Kim,

> We did try the subq route; however, my son is tall and thin and unfortunately

doesn't have a whole lot of fat tissue so it was really uncomfortable for him.

He's 5'11 " and weighs all of #138. We used two sites but they got uncomfortably

large. He was a trooper and tried it for about 2 months. He actually prefers

IVIG: he used Emla and his nurse was AMAZING. He was usually done within 1 1/2

hours.

>

> He was just diagnosed with a sinus infection so I'm curious to see where this

goes.

>

>

> > >

> > > > Good morning, at least in Ohio it's morning.

> > > >

> > > > My name is and my 17 year old son was diagnosed with Hypogam

> > when he was 6 years old. He recieved IVIG every three weeks until he was

> > about 10 when we 'trialed' him off, unsuccessfully. He then continued the

> > IVIG again until March of 2010 when he was again 'trialed' off. This year,

> > he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG

> > level was about 573, I'm using memory on this one. His post injection IGG

> > level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if

> > that's what it's called. Since his last IVIG, he has had one pneumonia and

> > one sinus infection both being treated successfully with one round of

> > antibiotics. Now, his immunologist would like to initiate IVIG again but I'm

> > against it. So, we decided to wait to reasses his levels in two months. It's

> > very confusing because his immunologist initialled diagnosed him with

> > Hypogamm and when he was assessed this year, she said he would be labeled

> > CVID if he hadn't mount ed an immunity to any or less than 2 of the

> > pneumococcals....confusing....LOL

> > > >

> > > > He wants to enter the military and with this diagnosis, his dreams are

> > forever squashed.

> > > >

> > > > On a side note, are there any other almost adults with Hypogamm? I think

> > it would help my son a TON to speak with someone. He's really having a tough

> > time with this. We thought he had a kidney disease but it appears as though

> > that isn't the case. If there's an almost adult who would be willing to

> > talk/ text another almost adult, please let me know...

> > > >

> > > > Thank you for everything!!!

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

Well sorry that did not work. I am glad that he gets done that quick..my girls

was 8hour from start to finsh with ivig…it does show that one might work for

one better then the other. Hope u find something to help him get over his

problems..

From: [mailto: ] On Behalf Of Ursula

Holleman

Sent: Saturday, July 30, 2011 10:29 AM

Subject: Re: Re: introduction

Does he keep go trough levels on the IV route?

Ursula

On Jul 30, 2011, at 10:04 AM, " Molly " <sds44001@...

<mailto:sds44001%40hotmail.com> > wrote:

> Kim,

> We did try the subq route; however, my son is tall and thin and unfortunately

doesn't have a whole lot of fat tissue so it was really uncomfortable for him.

He's 5'11 " and weighs all of #138. We used two sites but they got uncomfortably

large. He was a trooper and tried it for about 2 months. He actually prefers

IVIG: he used Emla and his nurse was AMAZING. He was usually done within 1 1/2

hours.

>

> He was just diagnosed with a sinus infection so I'm curious to see where this

goes.

>

>

> > >

> > > > Good morning, at least in Ohio it's morning.

> > > >

> > > > My name is and my 17 year old son was diagnosed with Hypogam

> > when he was 6 years old. He recieved IVIG every three weeks until he was

> > about 10 when we 'trialed' him off, unsuccessfully. He then continued the

> > IVIG again until March of 2010 when he was again 'trialed' off. This year,

> > he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG

> > level was about 573, I'm using memory on this one. His post injection IGG

> > level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if

> > that's what it's called. Since his last IVIG, he has had one pneumonia and

> > one sinus infection both being treated successfully with one round of

> > antibiotics. Now, his immunologist would like to initiate IVIG again but I'm

> > against it. So, we decided to wait to reasses his levels in two months. It's

> > very confusing because his immunologist initialled diagnosed him with

> > Hypogamm and when he was assessed this year, she said he would be labeled

> > CVID if he hadn't mount ed an immunity to any or less than 2 of the

> > pneumococcals....confusing....LOL

> > > >

> > > > He wants to enter the military and with this diagnosis, his dreams are

> > forever squashed.

> > > >

> > > > On a side note, are there any other almost adults with Hypogamm? I think

> > it would help my son a TON to speak with someone. He's really having a tough

> > time with this. We thought he had a kidney disease but it appears as though

> > that isn't the case. If there's an almost adult who would be willing to

> > talk/ text another almost adult, please let me know...

> > > >

> > > > Thank you for everything!!!

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

When he was on IVIG, his IGG levels were assessed every three months and he was

well over 800. I was happy with that.

> > > >

> > > > > Good morning, at least in Ohio it's morning.

> > > > >

> > > > > My name is and my 17 year old son was diagnosed with Hypogam

> > > when he was 6 years old. He recieved IVIG every three weeks until he was

> > > about 10 when we 'trialed' him off, unsuccessfully. He then continued the

> > > IVIG again until March of 2010 when he was again 'trialed' off. This year,

> > > he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG

> > > level was about 573, I'm using memory on this one. His post injection IGG

> > > level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals,

if

> > > that's what it's called. Since his last IVIG, he has had one pneumonia and

> > > one sinus infection both being treated successfully with one round of

> > > antibiotics. Now, his immunologist would like to initiate IVIG again but

I'm

> > > against it. So, we decided to wait to reasses his levels in two months.

It's

> > > very confusing because his immunologist initialled diagnosed him with

> > > Hypogamm and when he was assessed this year, she said he would be labeled

> > > CVID if he hadn't mount ed an immunity to any or less than 2 of the

> > > pneumococcals....confusing....LOL

> > > > >

> > > > > He wants to enter the military and with this diagnosis, his dreams are

> > > forever squashed.

> > > > >

> > > > > On a side note, are there any other almost adults with Hypogamm? I

think

> > > it would help my son a TON to speak with someone. He's really having a

tough

> > > time with this. We thought he had a kidney disease but it appears as

though

> > > that isn't the case. If there's an almost adult who would be willing to

> > > talk/ text another almost adult, please let me know...

> > > > >

> > > > > Thank you for everything!!!

> > > > >

> > > > >

> > > >

> > > >

> > > >

[Guest guest]

But did he stay well at 800. Many patients need troughs >1000.

Ursula

On Aug 1, 2011, at 12:07 PM, " Molly " <sds44001@...> wrote:

> When he was on IVIG, his IGG levels were assessed every three months and he

was well over 800. I was happy with that.

>

>

> > > > >

> > > > > > Good morning, at least in Ohio it's morning.

> > > > > >

> > > > > > My name is and my 17 year old son was diagnosed with Hypogam

> > > > when he was 6 years old. He recieved IVIG every three weeks until he was

> > > > about 10 when we 'trialed' him off, unsuccessfully. He then continued

the

> > > > IVIG again until March of 2010 when he was again 'trialed' off. This

year,

> > > > he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG

> > > > level was about 573, I'm using memory on this one. His post injection

IGG

> > > > level dropped to 472 and he mounted an immunity to 9 of 23

Pneumococcals, if

> > > > that's what it's called. Since his last IVIG, he has had one pneumonia

and

> > > > one sinus infection both being treated successfully with one round of

> > > > antibiotics. Now, his immunologist would like to initiate IVIG again but

I'm

> > > > against it. So, we decided to wait to reasses his levels in two months.

It's

> > > > very confusing because his immunologist initialled diagnosed him with

> > > > Hypogamm and when he was assessed this year, she said he would be

labeled

> > > > CVID if he hadn't mount ed an immunity to any or less than 2 of the

> > > > pneumococcals....confusing....LOL

> > > > > >

> > > > > > He wants to enter the military and with this diagnosis, his dreams

are

> > > > forever squashed.

> > > > > >

> > > > > > On a side note, are there any other almost adults with Hypogamm? I

think

> > > > it would help my son a TON to speak with someone. He's really having a

tough

> > > > time with this. We thought he had a kidney disease but it appears as

though

> > > > that isn't the case. If there's an almost adult who would be willing to

> > > > talk/ text another almost adult, please let me know...

> > > > > >

> > > > > > Thank you for everything!!!

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Is 800 high enough? I know was running 800 on IVIG and she still got a lot

of infections. Since we moved to subq she's now running about 1200 and rarely

gets sick.

________________________________

From: Molly <sds44001@...>

Sent: Mon, August 1, 2011 9:07:04 AM

Subject: Re: introduction

When he was on IVIG, his IGG levels were assessed every three months and he was

well over 800. I was happy with that.

> > > >

> > > > > Good morning, at least in Ohio it's morning.

> > > > >

> > > > > My name is and my 17 year old son was diagnosed with Hypogam

> > > when he was 6 years old. He recieved IVIG every three weeks until he was

> > > about 10 when we 'trialed' him off, unsuccessfully. He then continued the

> > > IVIG again until March of 2010 when he was again 'trialed' off. This year,

> > > he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG

> > > level was about 573, I'm using memory on this one. His post injection IGG

> > > level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals,

>if

> > > that's what it's called. Since his last IVIG, he has had one pneumonia and

> > > one sinus infection both being treated successfully with one round of

> > > antibiotics. Now, his immunologist would like to initiate IVIG again but

>I'm

> > > against it. So, we decided to wait to reasses his levels in two months.

>It's

> > > very confusing because his immunologist initialled diagnosed him with

> > > Hypogamm and when he was assessed this year, she said he would be labeled

> > > CVID if he hadn't mount ed an immunity to any or less than 2 of the

> > > pneumococcals....confusing....LOL

> > > > >

> > > > > He wants to enter the military and with this diagnosis, his dreams are

> > > forever squashed.

> > > > >

> > > > > On a side note, are there any other almost adults with Hypogamm? I

>think

> > > it would help my son a TON to speak with someone. He's really having a

>tough

> > > time with this. We thought he had a kidney disease but it appears as

though

> > > that isn't the case. If there's an almost adult who would be willing to

> > > talk/ text another almost adult, please let me know...

> > > > >

> > > > > Thank you for everything!!!

> > > > >

> > > > >

> > > >

> > > >

> > > >

[Guest guest]

We tried the subQ method but unfortunately, he doesn't have enough subq tissue

and it was quite painful for him. He tried for almost two months.

> >

> > > Good morning, at least in Ohio it's morning.

> > >

> > > My name is and my 17 year old son was diagnosed with Hypogam

> when he was 6 years old. He recieved IVIG every three weeks until he was

> about 10 when we 'trialed' him off, unsuccessfully. He then continued the

> IVIG again until March of 2010 when he was again 'trialed' off. This year,

> he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG

> level was about 573, I'm using memory on this one. His post injection IGG

> level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if

> that's what it's called. Since his last IVIG, he has had one pneumonia and

> one sinus infection both being treated successfully with one round of

> antibiotics. Now, his immunologist would like to initiate IVIG again but I'm

> against it. So, we decided to wait to reasses his levels in two months. It's

> very confusing because his immunologist initialled diagnosed him with

> Hypogamm and when he was assessed this year, she said he would be labeled

> CVID if he hadn't mount ed an immunity to any or less than 2 of the

> pneumococcals....confusing....LOL

> > >

> > > He wants to enter the military and with this diagnosis, his dreams are

> forever squashed.

> > >

> > > On a side note, are there any other almost adults with Hypogamm? I think

> it would help my son a TON to speak with someone. He's really having a tough

> time with this. We thought he had a kidney disease but it appears as though

> that isn't the case. If there's an almost adult who would be willing to

> talk/ text another almost adult, please let me know...

> > >

> > > Thank you for everything!!!

> > >

> > >

> >

> >

> >

[Guest guest]

Welcome to the group!! It is awesome to have such valuable information here and

to be able to ask questions to other families that are going through the same

thing. We are fairly new as well. My daughter Cortlynn just turned 1 and has

been casted 2 times so far. We started at about 8 months with her. In fact we

just took off cast #2 this morning and are headed to Greenville next week for

#3! This is such a great day today to feel my girls little body again:) I

think you've made the right decision to begin casting now! Things can change so

fast as I'm sure you've probably read. Well stay as strong as you can. It's

definetly a challenge sometimes but you can do it!! Best of luck to you all and

please keep us updated!!

>

> Hello,

>

> I am going to attach the letter I sent to to make it a bit eaiser for

> me:) Sorry for the long intro but looking for others in my area who are going

> through the same thing I am, and to see if they have used the same doctors.

> This is a great site and I would like to thank , and everyone who made

it

> possible.

>

> Our journey has just begun. I am new and fresh Oat terms and such so please

> excuse me if I don't make sense:) Reid is our second child and the poor kid

has

> been through the ringer even before he was born.

>

> My 11 month old (today) son was just diagnosed with infantile scoliosis, which

I

> guess we will see if it is congenital after the MRI. ???? Not sure if that is

> how it works. I had polyhydramnios (which is too much amniotic fluid) during

my

> pregnancy, so he had little or no room to move around in utero. About two

> months after he was born I noticed that his head was ALWAYS tilted to one side

> and when we went to the doctor she told us that it was most likely

torticollis.

> We took him to a orthopedic and she confirmed that it was indeed torticollis.

> We had him in PT two times a week for the first couple of months, and then he

is

> still being treated once a month since he has improved so much. He had RSV

> which caused phenomia and was hospitalize for a week, and has asthma. He was

> " colicly " , had acid reflux and we found out that all his issues were due to a

> milk allergy. Once we changed his formula (for the 11th time) he was a new and

> enjoyable little guy. We later found out that he is also highly allergic to

> peanuts and that was from just skin contact. We go to a top allergist next

> month to get a better idea what is going on with him in the allergy

department,

> and I am looking forward to that.

>

> Back in June our PT noticed that he had a " rib hump " on his back and thought

it

> was something we should look into, and so we did. The radiologist diagnosed

him

> with scoliosis and so we took him back to his orthopedist which (in my

opinion)

> brushed us off, and told us not to worry that it was because he can't stand

yet

> and to come back when he turned a year. He has also been under the care of a

> neurosurgeon since he has such a big noggin, and I showed him his back and he

> told me that I needed to get a second opinion and referred us to a Dr. at

Hopkins, in Baltimore. We are very lucky in the sense that we

> live in land and Hopkins is only a hour drive for us. So we took him there

> and he said that his curve was 35 degrees and we really need to look into

> casting or a brace and we were devastated to say the least.....pretty much

> speechless. I know it's not something terminal, and I am over the moon

> regarding that, but the thought of my baby being put under anesthesia and

being

> in cast for months is terrifying. He also told us that his curve back in June

> (after looking at the x-ray) was 25 degrees and anything over 10 degrees was

> considered scoliosis.

>

> So needless to say my husband and I have decided to go ahead with the

> casting.....

>

[Guest guest]

Welcome!  We actually have been to both Boston and Rochester.  We went to boston first and they were not doing Mehta Casting at the time and actually refered us to Dr. S in rochester.  .  They are now.  Rochester on the other hand had been practicing it for well over 5 years and were directly trained by Mehta.  I can not say enough great things about dr. S.  He is wonderful.  My son started at 47 laying down (70s + standing) He just turned 4 and is 0 degrees.  He is doing wonderful. 

Feel free to email me directly if you have any questions. JennMommy to Cole

[Guest guest]

Hi

You guys are on the right track! It sounds like you are researching &

finding the best for little Lucy! I just felt compelled to respond to

your question about how long to wait. I'm not a doctor so I understand

that I shouldn't be giving medical advise but I will tell you what we did

& also what we wish we would have done here. We waited 2 & 1/2 mos after

our initial appointment (Levi was 15mos) with the local peds ortho as he

suggested my son had an 80% chance of being in the resolving group. (his

initial RVAD reading was 16/17 with my understanding as the cut off for

" resolving " is 20) Of course I wouldn't be writing if Levi had been

resolving....it progressed from 20* Cobb to somewhere between 29-35 * cobb

& 25 RVAD in that 2 & 1/2 mos. We RAN not walked to shriners SLC where he

was casted just before 19 mos old. I wish we wouldn't have waited because

from my understanding the best chance for a cure is under 2 yrs & 60*. We

were pushing on that window. At SLC we learned Levi's previous X ray

wasn't very good & his " real " numbers were 31* with 10 RVAD. We were told

some docs would criticize the choice to cast at this point saying there

was still a chance to resolve. We just didn't see it that way the risks

were way to high for us with waiting. The risks to casting were basically

anesthesia. We were done waiting & Levi is doing great in cast #2.

Holding at 16/17* with NO Rotation! If you find yourself in a position

where you are weighing the options decide what your risk tolerance level

is...

Amber

mommy to Levi

PS. Levi is also very long (his dad's 6'7'' so for Levi its normal) &

skinny with a right curve under the shoulder blade. However the skinny

might be a thing of the past as he doubled his food intake the second he

was casted & gained 4 lbs & 1 inch in the 9 wks he wore his first cast.

> Hi Everyone,

> I'm grateful to find you and thanks for having me. There's so much good

> information here which I'm still working through.

>

> My 5.5 month daughter Lucy was just diagnosed with scoliosis - we knew

> something was wrong by the hump on the upper right of her back, but we're

> still in shock and so scared. The radiologist called it a mild curve with

> no bone abnormalities. The curve seems to extend from the top to bottom

> of her spine. We live in Boston and are heading to Children's Hospital

> next week for a consultation so I will get more info then.

>

> We have family in Rochester NY so are also considering scheduling an appt

> at Strong Hospital since they seem highly regarded and experienced in the

> Mehta process. Does anyone have any experience with either Hospital? I

> believe Boston Children's does practice Mehta but I will confirm.

>

> Lucy has no other health issues that we know of. She is a long thin baby,

> so we're worried about progression (I know it has progressed in the past

> month by looking at her). We're also worried that she has an upper right

> thoracic curve which has a 'worse' prognosis for females per the text

> books.

>

> I assume the outcome of our Tuesday appointment at Boston Children's is

> going to be to wait and watch. How long should we wait?

>

> Again, thank you all.

>

> (Lucy's dad)

>

>

[Guest guest]

I'm with Amber. In fact, I envy her situation. I wish we had been so well informed from the beginning.

In our case, I feel like we've been getting incomplete facts at every turn. But yes, in our experience, the longer you wait, the harder and longer it is likely to be to correct later. If I had it to do over again -- knowing what I know now -- I would not have waited a moment longer than I had to before seeing the most qualified specialist in Mehta casting that I could find. That is what we're doing now.

Another drawback to waiting much longer is that the older your baby gets, the more aware she will become of what's happening to her, and the more likely she will be to remember it all more clearly later on in life. I don't want to scare you, but that's my honest point of view. All the best to you and little Lucy!

[Guest guest]

Hello

My daughter Eleanor (20 months) was diagnosed with scoliosis in November. We live in Boston and we went to Children's Hospital here. She was cast for the first time in December, using Mehta method, at the same hospital. Of course it's too early to tell how is this going to work out for her, but so far we are very hopeful. She went from 45 degrees out of cast to 17 degrees in cast.

If you have any specific questions about our experience with the hospital, please feel free to ask.

Regards,

Ventsislava

From: lucysdad2011 <lucysdad711@...>Subject: Introductioninfantile scoliosis treatment Date: Friday, January 6, 2012, 8:58 AM

Hi Everyone,I'm grateful to find you and thanks for having me. There's so much good information here which I'm still working through.My 5.5 month daughter Lucy was just diagnosed with scoliosis - we knew something was wrong by the hump on the upper right of her back, but we're still in shock and so scared. The radiologist called it a mild curve with no bone abnormalities. The curve seems to extend from the top to bottom of her spine. We live in Boston and are heading to Children's Hospital next week for a consultation so I will get more info then.We have family in Rochester NY so are also considering scheduling an appt at Strong Hospital since they seem highly regarded and experienced in the Mehta process. Does anyone have any experience with either Hospital? I believe Boston Children's does practice Mehta but I will confirm.Lucy has no other health issues that we know of. She is a long thin baby, so we're worried about

progression (I know it has progressed in the past month by looking at her). We're also worried that she has an upper right thoracic curve which has a 'worse' prognosis for females per the text books.I assume the outcome of our Tuesday appointment at Boston Children's is going to be to wait and watch. How long should we wait?Again, thank you all.(Lucy's dad)

[Guest guest]

Hi I have been casting my son Noah at Boston Children's with Dr. K since September of 2010. He has also trained Dr. G. who did one for us - we have now done 6 there. Dr. K was the first MD there we spoke with in regards to casting and he was completely honest with me - which is good. He also suggested immediate casting though as it was just stating summer, we chose to wait. Do you know who you are going to see for a consultation? When we brought my son, we were well prepared with all the information this group helped provide plus specific questions related to Noah. Dr. K answered everything matter-of-factly and we left more informed than we had been for the year we'd been "waiting/watching" at Mass

General. Since we started casting, there are not enough good things to say about the MDs, support staff and all who have been on this journey with us at Boston Children's. I completely recommend you ask as many questions as you have to as Lucy's advocate. If you have any questions or want any more info specific to Boston Children's please feel free to ask. Sharing is such an important part of this journey.Best of luckLeigh (mom to Noah)6th cast - Boston Children's25 degree rotation, 46/42 curves; down to 16 rotation, 42/36 (17/13 in cast). From: Ventsislava Tomanova <vtomanova@...> infantile scoliosis treatment Sent: Saturday, January 7, 2012 3:01 PM Subject: Re: Introduction

Hello

My daughter Eleanor (20 months) was diagnosed with scoliosis in November. We live in Boston and we went to Children's Hospital here. She was cast for the first time in December, using Mehta method, at the same hospital. Of course it's too early to tell how is this going to work out for her, but so far we are very hopeful. She went from 45 degrees out of cast to 17 degrees in cast.

If you have any specific questions about our experience with the hospital, please feel free to ask.

Regards,

Ventsislava

From: lucysdad2011 <lucysdad711@...>Subject: Introductioninfantile scoliosis treatment Date: Friday, January 6, 2012, 8:58 AM

Hi Everyone,I'm grateful to find you and thanks for having me. There's so much good information here which I'm still working through.My 5.5 month daughter Lucy was just diagnosed with scoliosis - we knew something was wrong by the hump on the upper right of her back, but we're still in shock and so scared. The radiologist called it a mild curve with no bone abnormalities. The curve seems to extend from the top to bottom of her spine. We live in Boston and are heading to Children's Hospital next week for a consultation so I will get more info then.We have family in Rochester NY so are also considering scheduling an appt at Strong Hospital since they seem highly regarded and experienced in the Mehta process. Does anyone have any experience with either Hospital? I believe Boston Children's does practice Mehta but I will confirm.Lucy has no other health issues that we know of. She is a long thin baby, so we're worried about

progression (I know it has progressed in the past month by looking at her). We're also worried that she has an upper right thoracic curve which has a 'worse' prognosis for females per the text books.I assume the outcome of our Tuesday appointment at Boston Children's is going to be to wait and watch. How long should we wait?Again, thank you all.(Lucy's dad)

[Guest guest]

Welcome to CAST! Please read the " Growth as a corrective force article "

by Mehta which can be found in the Files section of CAST (if you havent

already). And~ check out A New Direction DVD whch can be found in the

Youtube portion of the site. These items along with feed back from CAST

members should help you A LOT during your Early Treatment

journey.Especially, when it comes to understanding the necessary

principles of this gentle and corrective treatment modality. Boston has

the correct equipment and the docs there have been trained. Please take a

look at the article (photos of a proper cast) and confirm they will be

applying proper windows.

Please keep the questions coming.

HRH

> Hi Everyone,

> I'm grateful to find you and thanks for having me. There's so much good

> information here which I'm still working through.

>

> My 5.5 month daughter Lucy was just diagnosed with scoliosis - we knew

> something was wrong by the hump on the upper right of her back, but we're

> still in shock and so scared. The radiologist called it a mild curve with

> no bone abnormalities. The curve seems to extend from the top to bottom

> of her spine. We live in Boston and are heading to Children's Hospital

> next week for a consultation so I will get more info then.

>

> We have family in Rochester NY so are also considering scheduling an appt

> at Strong Hospital since they seem highly regarded and experienced in the

> Mehta process. Does anyone have any experience with either Hospital? I

> believe Boston Children's does practice Mehta but I will confirm.

>

> Lucy has no other health issues that we know of. She is a long thin baby,

> so we're worried about progression (I know it has progressed in the past

> month by looking at her). We're also worried that she has an upper right

> thoracic curve which has a 'worse' prognosis for females per the text

> books.

>

> I assume the outcome of our Tuesday appointment at Boston Children's is

> going to be to wait and watch. How long should we wait?

>

> Again, thank you all.

>

> (Lucy's dad)

>

>

[Guest guest]

Linzy,

My son will be 2 at the end of Feb & he gets casted at SLC. You are going

to a fantastic place! Everyone there is incredible & I haven't met anyone

there I didn't like from the receptionists to the team. I wouldn't worry

about needed to push for casting....they know what they are doing. Levi's

RVAD was only 10 & the Doc even said some would criticize him for casting

but his experience told him it was progressive & he didn't want us to play

catch up or miss the window. They will cast if that is truly what is

best. I remember leaving from our very first visit with this sense of

relief because we were finally somewhere where my son wasn't an

anomaly....They saw children like him everyday & had answers for us...real

answers. I will just prepare you for the traction X ray if you haven't

had one yet. (we didn't know about it till they did it) They wrap a

cloth type thing around the head and pull to see how flexible the spine

is...it was really hard to watch. But I promise Levi was over crying on

the floor playing in less then 30 sec...I was however still crying

Best of luck & if you have any questions at all please email me! We are

only in cast 2 so I know how over whelming it all is...we go back March 1.

p.s. They told me to bring a copy of all the X rays, Mri's, & medical

records just in cast they were missing something that hadn't arrived in

the mail...

Amber

mommy to Levi

2nd cast SLC 31* down to 16/17* in cast with NO rotation!

> Hello. My 4 1/2 month old Nash was just diagnosed with infantile scoliosis

> with a 23 degree curve. We have an appointment with Schriners in Salt Lake

> City on Feb 1. I am just wondering if you have any advise to give me so I

> can be prepared for his appointment. Is 23 enough to push for the casting?

> Is there anything I need to bring or do? This is all so over whelming and

> has consumed my thoughts lately. Any advice is appreciated. Thank you in

> advanced!

> Linzy

>

[Guest guest]

Hey Linzy,

Nash is the same age my daughter was when we first got the devastating

confirmation that she had scoliosis. Originally we were told 23 degrees as well.

We went to a local ortho and jus weren't pleased with his wait and see approach.

After researching, we endeded up getting an appointment at Shriners in

Greenville. By the time we got there which was only about a month mind you, she

was at 44 degrees with a 55 RVAD! The doc at Shriners said no way would he wait

and see and we were scheduled for a MRI and casted the following week! She is

in cast 4 now doing great! Hasn't skipped a beat, learned to walk just fine

with it on without delay. She is almost straight in her cast now (haven't done

out of cast Xrays yet) and we are so excited. She will still need a lot longer

in the cast but her chance of a cure is looking pretty good:). With that being

said, I think it's a wonderful time to start casting and have great results. I

it was me, I would push it! I don't think you'll have to worry to much if you

go to a Mehta trained doctor. I don't thnk they usually have the chance to get

started as young as our children are. The younger the better and the more

likely to get a cure!! I wish you the very best. I know this is the hardest time

for you right now. My advice whil you wait for your appointment is to hold that

baby and enjoy that soft squishy body. I'm so glad you found out so early like

we did! Good luck and let me know how things turn out:)

>

> Hello. My 4 1/2 month old Nash was just diagnosed with infantile scoliosis

with a 23 degree curve. We have an appointment with Schriners in Salt Lake City

on Feb 1. I am just wondering if you have any advise to give me so I can be

prepared for his appointment. Is 23 enough to push for the casting? Is there

anything I need to bring or do? This is all so over whelming and has consumed my

thoughts lately. Any advice is appreciated. Thank you in advanced!

> Linzy

>

[Guest guest]

Hi Leeann,

First, congrats on the birth of your

daughter! I know what it’s like to feel incredible joy with your

baby and concurrently feel great concern for her. My 4yr old daughter

dealt with a brachial plexus injury at birth through 12 months. She is

now completing her second year of casting for PIS, which is a totally separate

issue. I can assure you that you’ve found a wonderfully informative

and supportive group.

Did the PSS at s Hopkins mention EDF

casting as an option? I would definitely get a second opinion at a

casting hospital. Shriners in Philadelphia is close to Baltimore, assuming you didn’t travel that far to JH. JH has an

excellent reputation, however, I would still seek a second opinion. The

more info you are able to gather, the more comfortable you will be with your decision

regarding your daughter’s treatment. It sounds like your daughter’s

scoliosis is not the self-resolving kind. Bracing will not correct her

curve. Unless there is a medical reason why she is not a candidate for

casting, EDF casting is your daughter’s best option for correction.

As questions come into your mind, feel

free to msg the group often. There are many parents here whose children

are in all stages of the journey.

Sherry

Introduction

Hello everyone,

I just wanted to introduce myself, my family, and our journey so far.

My daughter, Emmalee, was born 4/18/11 and immediately diagnosed with

Congenital Hip Dysplasia. She was placed in a Pavlik Harness for 2 months to

help the bones " grow " into the right position.

At around 6 months, she was sent to physical therapy for Torticollis and has

been in PT since. At a periodic evaluation, they noticed that there was a curve

in her back and sent her to her Orthopedist.

At that appointment 2 weeks ago, she was referred to a pediatric spine

specialist at s Hopkins with a preliminary diagnosis of a 19 degree curve.

At the appointment with the PSS last week, she was diagnosed with a 34 degree

curve and is being scheduled for an MRI with a follow-up to determine a course

of action. So far, he has mention a brace, but didn't want to be definitive

until after the MRI.

So that's where we are right now. Josh and I are trying to sort out all the

information and be prepared for what our options may be. We look forward to

getting feedback and advice from all of you.

Thanks,

Leeann

[Guest guest]

Hi Leeann,

First, congrats on the birth of your

daughter! I know what it’s like to feel incredible joy with your

baby and concurrently feel great concern for her. My 4yr old daughter

dealt with a brachial plexus injury at birth through 12 months. She is

now completing her second year of casting for PIS, which is a totally separate

issue. I can assure you that you’ve found a wonderfully informative

and supportive group.

Did the PSS at s Hopkins mention EDF

casting as an option? I would definitely get a second opinion at a

casting hospital. Shriners in Philadelphia is close to Baltimore, assuming you didn’t travel that far to JH. JH has an

excellent reputation, however, I would still seek a second opinion. The

more info you are able to gather, the more comfortable you will be with your decision

regarding your daughter’s treatment. It sounds like your daughter’s

scoliosis is not the self-resolving kind. Bracing will not correct her

curve. Unless there is a medical reason why she is not a candidate for

casting, EDF casting is your daughter’s best option for correction.

As questions come into your mind, feel

free to msg the group often. There are many parents here whose children

are in all stages of the journey.

Sherry

Introduction

Hello everyone,

I just wanted to introduce myself, my family, and our journey so far.

My daughter, Emmalee, was born 4/18/11 and immediately diagnosed with

Congenital Hip Dysplasia. She was placed in a Pavlik Harness for 2 months to

help the bones " grow " into the right position.

At around 6 months, she was sent to physical therapy for Torticollis and has

been in PT since. At a periodic evaluation, they noticed that there was a curve

in her back and sent her to her Orthopedist.

At that appointment 2 weeks ago, she was referred to a pediatric spine

specialist at s Hopkins with a preliminary diagnosis of a 19 degree curve.

At the appointment with the PSS last week, she was diagnosed with a 34 degree

curve and is being scheduled for an MRI with a follow-up to determine a course

of action. So far, he has mention a brace, but didn't want to be definitive

until after the MRI.

So that's where we are right now. Josh and I are trying to sort out all the

information and be prepared for what our options may be. We look forward to

getting feedback and advice from all of you.

Thanks,

Leeann

[Guest guest]

Welcome to the group. We too are at the beginning of our journey, having just

got our 1st cast last week. Feel to free to ask any questions and keep us

updated.

>

> Hello everyone,

>

> I just wanted to introduce myself, my family, and our journey so far.

>

> My daughter, Emmalee, was born 4/18/11 and immediately diagnosed with

Congenital Hip Dysplasia. She was placed in a Pavlik Harness for 2 months to

help the bones " grow " into the right position.

>

> At around 6 months, she was sent to physical therapy for Torticollis and has

been in PT since. At a periodic evaluation, they noticed that there was a curve

in her back and sent her to her Orthopedist.

>

> At that appointment 2 weeks ago, she was referred to a pediatric spine

specialist at s Hopkins with a preliminary diagnosis of a 19 degree curve.

At the appointment with the PSS last week, she was diagnosed with a 34 degree

curve and is being scheduled for an MRI with a follow-up to determine a course

of action. So far, he has mention a brace, but didn't want to be definitive

until after the MRI.

>

> So that's where we are right now. Josh and I are trying to sort out all the

information and be prepared for what our options may be. We look forward to

getting feedback and advice from all of you.

>

> Thanks,

> Leeann

>

[Guest guest]

Sherry,

Thanks! The info is great! He didn't really suggest anything yet...we're

basically just very excited to be with someone who knows what he's looking at

and recognizes that there is something that needs to be done. I have this gut

feeling that he will refer us to places/methods once we get a full analysis of

what is going on. I wouldn't be opposed to going to Philly as we live in PA

near Gettysburg, it's just a matter of what insurance will cover.

At this point, it feels like I will have hundreds of questions. But, for now,

we are taking it day by day.

~Leeann

>

> Hi Leeann,

>

> First, congrats on the birth of your daughter! I know what it's like to

> feel incredible joy with your baby and concurrently feel great concern for

> her. My 4yr old daughter dealt with a brachial plexus injury at birth

> through 12 months. She is now completing her second year of casting for

> PIS, which is a totally separate issue. I can assure you that you've found

> a wonderfully informative and supportive group.

>

>

>

> Did the PSS at s Hopkins mention EDF casting as an option? I would

> definitely get a second opinion at a casting hospital. Shriners in

> Philadelphia is close to Baltimore, assuming you didn't travel that far to

> JH. JH has an excellent reputation, however, I would still seek a second

> opinion. The more info you are able to gather, the more comfortable you

> will be with your decision regarding your daughter's treatment. It sounds

> like your daughter's scoliosis is not the self-resolving kind. Bracing will

> not correct her curve. Unless there is a medical reason why she is not a

> candidate for casting, EDF casting is your daughter's best option for

> correction.

>

>

>

> As questions come into your mind, feel free to msg the group often. There

> are many parents here whose children are in all stages of the journey.

>

> Sherry

>

>

>

> Introduction

>

>

>

>

>

> Hello everyone,

>

> I just wanted to introduce myself, my family, and our journey so far.

>

> My daughter, Emmalee, was born 4/18/11 and immediately diagnosed with

> Congenital Hip Dysplasia. She was placed in a Pavlik Harness for 2 months to

> help the bones " grow " into the right position.

>

> At around 6 months, she was sent to physical therapy for Torticollis and has

> been in PT since. At a periodic evaluation, they noticed that there was a

> curve in her back and sent her to her Orthopedist.

>

> At that appointment 2 weeks ago, she was referred to a pediatric spine

> specialist at s Hopkins with a preliminary diagnosis of a 19 degree

> curve. At the appointment with the PSS last week, she was diagnosed with a

> 34 degree curve and is being scheduled for an MRI with a follow-up to

> determine a course of action. So far, he has mention a brace, but didn't

> want to be definitive until after the MRI.

>

> So that's where we are right now. Josh and I are trying to sort out all the

> information and be prepared for what our options may be. We look forward to

> getting feedback and advice from all of you.

>

> Thanks,

> Leeann

>

[Guest guest]

You’re welcome, Leeann! I’m

glad to see you received my post. My posts never come through my email (I

could look on the groups page) so I am never certain if they went through

to the group.

Shriners will bill your insurance if you

have it but will not bill you. For example, we have a 10% co-insurance on

all claims. Aetna pays the agreed upon rate and determines our share. Shriners

waives our share.

You also do not need a referral.

For whatever reason, I kept expecting the

local pediatricians and orthopedists to coordinate my daughter’s care

with both her BPI and now the PIS. I guess it’s the whole “primary

care physician” concept that I took to heart! But other than requesting

a report from the specialist and then the children’s hospitals, they had

nothing to do with managing her care. The local pediatric orthopedist

didn’t even know about EDF casting (he kept referring to the old style

Risser casting which caused chest wall deformities) and scared the daylights

out of me by saying she needed to go straight to rods (she was 2). He was

quick to refer to his time at Shriners (and referred to it frequently but never

exactly stated when – it could have been 20yrs ago!) and even took me to

a scoliosis website to point out the articles he wrote. He painted

himself as an expert which I found very confusing when I realized he wasn’t

up-to-date on the latest treatment which was going on 40 minutes from his

office! (We are in a suburb of Philadelphia)

Sherry

Introduction

>

>

>

>

>

> Hello everyone,

>

> I just wanted to introduce myself, my family, and our journey so far.

>

> My daughter, Emmalee, was born 4/18/11 and immediately diagnosed with

> Congenital Hip Dysplasia. She was placed in a Pavlik Harness for 2 months

to

> help the bones " grow " into the right position.

>

> At around 6 months, she was sent to physical therapy for Torticollis and

has

> been in PT since. At a periodic evaluation, they noticed that there was a

> curve in her back and sent her to her Orthopedist.

>

> At that appointment 2 weeks ago, she was referred to a pediatric spine

> specialist at s Hopkins with a preliminary diagnosis of a 19 degree

> curve. At the appointment with the PSS last week, she was diagnosed with a

> 34 degree curve and is being scheduled for an MRI with a follow-up to

> determine a course of action. So far, he has mention a brace, but didn't

> want to be definitive until after the MRI.

>

> So that's where we are right now. Josh and I are trying to sort out all

the

> information and be prepared for what our options may be. We look forward

to

> getting feedback and advice from all of you.

>

> Thanks,

> Leeann

>

[Guest guest]

Sherry - When I post something the email tends to go to my email spam folder for some reason. The other emails go to the inbox just fine which is weird.

From: SR Clancy <svale88@...>infantile scoliosis treatment Sent: Monday, January 30, 2012 9:59 AMSubject: RE: Re: Introduction

You’re welcome, Leeann! I’m glad to see you received my post. My posts never come through my email (I could look on the groups page) so I am never certain if they went through to the group.

Shriners will bill your insurance if you have it but will not bill you. For example, we have a 10% co-insurance on all claims. Aetna pays the agreed upon rate and determines our share. Shriners waives our share.

You also do not need a referral.

For whatever reason, I kept expecting the local pediatricians and orthopedists to coordinate my daughter’s care with both her BPI and now the PIS. I guess it’s the whole “primary care physician†concept that I took to heart! But other than requesting a report from the specialist and then the children’s hospitals, they had nothing to do with managing her care. The local pediatric orthopedist didn’t even know about EDF casting (he kept referring to the old style Risser casting which caused chest wall deformities) and scared the daylights out of me by saying she needed to go straight to rods (she was 2). He was quick to refer to his time at Shriners (and referred to it frequently but never exactly stated when – it could have been 20yrs ago!) and even took me to a scoliosis website to point

out the articles he wrote. He painted himself as an expert which I found very confusing when I realized he wasn’t up-to-date on the latest treatment which was going on 40 minutes from his office! (We are in a suburb of Philadelphia)

Sherry

Introduction> > > > > > Hello everyone,> > I just wanted to introduce myself, my family, and our journey so far.> > My daughter, Emmalee, was born 4/18/11 and immediately diagnosed with> Congenital Hip Dysplasia. She was placed in a Pavlik Harness for 2 months to> help the bones "grow" into the right position.> > At around 6 months, she was sent to physical therapy for Torticollis and has> been in PT since. At a periodic evaluation, they noticed that there was a> curve in her back and sent her to her Orthopedist.> > At that appointment 2 weeks ago, she was referred to a pediatric spine>

specialist at s Hopkins with a preliminary diagnosis of a 19 degree> curve. At the appointment with the PSS last week, she was diagnosed with a> 34 degree curve and is being scheduled for an MRI with a follow-up to> determine a course of action. So far, he has mention a brace, but didn't> want to be definitive until after the MRI.> > So that's where we are right now. Josh and I are trying to sort out all the> information and be prepared for what our options may be. We look forward to> getting feedback and advice from all of you.> > Thanks,> Leeann>

[Guest guest]

Just so you have all the information you need to make the best decision

for you shriners does not treat based on insurance or you ability to pay.

They are a charitable based orginaztion. In fact we had a much harder time

dealing with the billing at children's hospital which our insurance

covered then with shriners so far.

Amber

> Sherry,

>

> Thanks! The info is great! He didn't really suggest anything yet...we're

> basically just very excited to be with someone who knows what he's looking

> at and recognizes that there is something that needs to be done. I have

> this gut feeling that he will refer us to places/methods once we get a

> full analysis of what is going on. I wouldn't be opposed to going to

> Philly as we live in PA near Gettysburg, it's just a matter of what

> insurance will cover.

>

> At this point, it feels like I will have hundreds of questions. But, for

> now, we are taking it day by day.

>

> ~Leeann

>

>

>>

>> Hi Leeann,

>>

>> First, congrats on the birth of your daughter! I know what it's like to

>> feel incredible joy with your baby and concurrently feel great concern

>> for

>> her. My 4yr old daughter dealt with a brachial plexus injury at birth

>> through 12 months. She is now completing her second year of casting for

>> PIS, which is a totally separate issue. I can assure you that you've

>> found

>> a wonderfully informative and supportive group.

>>

>>

>>

>> Did the PSS at s Hopkins mention EDF casting as an option? I would

>> definitely get a second opinion at a casting hospital. Shriners in

>> Philadelphia is close to Baltimore, assuming you didn't travel that far

>> to

>> JH. JH has an excellent reputation, however, I would still seek a

>> second

>> opinion. The more info you are able to gather, the more comfortable you

>> will be with your decision regarding your daughter's treatment. It

>> sounds

>> like your daughter's scoliosis is not the self-resolving kind. Bracing

>> will

>> not correct her curve. Unless there is a medical reason why she is not

>> a

>> candidate for casting, EDF casting is your daughter's best option for

>> correction.

>>

>>

>>

>> As questions come into your mind, feel free to msg the group often.

>> There

>> are many parents here whose children are in all stages of the journey.

>>

>> Sherry

>>

>>

>>

>> Introduction

>>

>>

>>

>>

>>

>> Hello everyone,

>>

>> I just wanted to introduce myself, my family, and our journey so far.

>>

>> My daughter, Emmalee, was born 4/18/11 and immediately diagnosed with

>> Congenital Hip Dysplasia. She was placed in a Pavlik Harness for 2

>> months to

>> help the bones " grow " into the right position.

>>

>> At around 6 months, she was sent to physical therapy for Torticollis and

>> has

>> been in PT since. At a periodic evaluation, they noticed that there was

>> a

>> curve in her back and sent her to her Orthopedist.

>>

>> At that appointment 2 weeks ago, she was referred to a pediatric spine

>> specialist at s Hopkins with a preliminary diagnosis of a 19 degree

>> curve. At the appointment with the PSS last week, she was diagnosed with

>> a

>> 34 degree curve and is being scheduled for an MRI with a follow-up to

>> determine a course of action. So far, he has mention a brace, but didn't

>> want to be definitive until after the MRI.

>>

>> So that's where we are right now. Josh and I are trying to sort out all

>> the

>> information and be prepared for what our options may be. We look forward

>> to

>> getting feedback and advice from all of you.

>>

>> Thanks,

>> Leeann

>>

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