Re: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.

[Guest guest]

Thanks ,

Good to know that there is someone I can talk to about this! Her degree of curve was noted on the pediatricians referral as 'about 30 degrees'. Does this mean that after the hemivertebrae is 'corrected', her spine will return to normal? How have things fared for your daughter? Holly's hemivertebra is at L3.

We are lucky enough to have a friend who is Holly's pediatrician and he is trying to get us in to see a ped orth as soon as next week, as well as an MRI. Not a good time of year to make appointments as everyone is having a summer/christmas break. He seemed quite relaxed and said that it wasn't totally urgent. Is this the case?

Thanks again for your response,

Emma

From: ansiosamjm <hemivert@...>Subject: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 31 December, 2010, 4:39 AM

Hi Emma,Sorry to hear the news about your daughter. When there is a hemivertebra, the scoliosis is called congenital scoliosis, which refers to the curve in her spine being caused by the vertebrae not being formed in a typical way. My daughter also has congenital scoliosis. She also had constipation, which seemed to be due to low muscle tone. It is usually recommended to rule out other problems that can go along with hemivertebrae, such as an echocardiogram to rule out heart issues, an MRI to rule out spinal cord issues, a renal ultrasound to rule out kidney issues and sometimes a hearing test to rule out hearing issues. The pediatrician should be able to organize these tests and I think you could take your time arranging them as if there was an urgent problem, you would have probably already seen symptoms. Did they tell you the degree of the curve? The size of the curve as well as the location of the hemivertebra will gauge what

kind of treatment will be best. You probably want to get a copy of the xray and also try to find a pediatric orthopedic who specializes in congenital scoliosis. There are several parents here who have children with hemivertebrae, I am sure they will respond as well. Glad to answer any questions you may have. >> Hi there,> > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position,

despite my request for standing. Anyway, the radiologist called me in to see him with the results and showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> Thanking you in advance for your responses,> Emma>

[Guest guest]

Hi Emma-Jane,

My daughter had a hemi as well. It was between T8 and T9. Not all hemi's can be removed and they can't always get the spine back to 0*. In our case they did remove it used hardward to "fuse" T8 and T9, but couldn't get Grace to 0 as it pinched on her spinal cord and lessened her function in her legs. She is fused at about 5*. Now we are also dealing with the compensatory curves (the spine often will curve during growth years with a hemi to compensate for the curves). Grace's ortho at Portland Shriner's is a "think outside the box" kind of guy and has agreed to cast her. Most doctors won't cast for congenital scoliosis from what I understand. I agree with though, it would be best to have your daughter thoroughly checked over as congenital scoliosis can coincide with numerous other anomalies, I would think this should include an MRI as well.

The problem we are dealing with now is that we couldn't tell at the time of her hemi removal that a few of her other verts were going to not grow accurately. So now we are seeing some slight wedging in other verts. But her curves were already up above 50* at 3 yrs old, so we couldn't wait any longer. We are casting, but it appears that it is only a "holder" until either she doesn't tolerate it anymore, or she's old enough to go straight to a fusion and skip growing rods.

Oh, one other thing. The thing to watch for in a hemi is that the curves are growing. It tends in most cases to be slow moving. We knew about my daughter's hemi at birth. At 6 wks old it was 23* and by 18 mo it was 40 and by almost 2 it was 53*. Sometimes the curves don't grow at all and in those cases, they wouldn't do anything. Unfortunately, with congenital scoliosis, is very much a hurry up and wait situation.

Let me know if there is anything else I can do to help

Jane

Grace, 4 yrs old, moderate omphalocele fully repaired, congenital scoliosis (hemi removed 9/09, series of casts and bracing, currently in cast #5), non-neurogenic neurogenic bladder (currently trying a TENS unit for stimulation, but completely incontinent)

From: Emma-Jane Ellis <emmajaneellis@...>infantile scoliosis treatment Sent: Thu, December 30, 2010 11:47:46 AMSubject: Re: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.

Thanks ,

Good to know that there is someone I can talk to about this! Her degree of curve was noted on the pediatricians referral as 'about 30 degrees'. Does this mean that after the hemivertebrae is 'corrected', her spine will return to normal? How have things fared for your daughter? Holly's hemivertebra is at L3.

We are lucky enough to have a friend who is Holly's pediatrician and he is trying to get us in to see a ped orth as soon as next week, as well as an MRI. Not a good time of year to make appointments as everyone is having a summer/christmas break. He seemed quite relaxed and said that it wasn't totally urgent. Is this the case?

Thanks again for your response,

Emma

From: ansiosamjm <hemivert@...>Subject: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 31 December, 2010, 4:39 AM

Hi Emma,Sorry to hear the news about your daughter. When there is a hemivertebra, the scoliosis is called congenital scoliosis, which refers to the curve in her spine being caused by the vertebrae not being formed in a typical way. My daughter also has congenital scoliosis. She also had constipation, which seemed to be due to low muscle tone. It is usually recommended to rule out other problems that can go along with hemivertebrae, such as an echocardiogram to rule out heart issues, an MRI to rule out spinal cord issues, a renal ultrasound to rule out kidney issues and sometimes a hearing test to rule out hearing issues. The pediatrician should be able to organize these tests and I think you could take your time arranging them as if there was an urgent problem, you would have probably already seen symptoms. Did they tell you the degree of the curve? The size of the curve as well as the location of the hemivertebra will gauge what

kind of treatment will be best. You probably want to get a copy of the xray and also try to find a pediatric orthopedic who specializes in congenital scoliosis. There are several parents here who have children with hemivertebrae, I am sure they will respond as well. Glad to answer any questions you may have. >> Hi there,> > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position, despite my request for standing. Anyway, the

radiologist called me in to see him with the results and showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> Thanking you in advance for your responses,> Emma>

[Guest guest]

I just wanted to say welcome to CAST Emma : ) Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Emma-Jane Ellis <emmajaneellis@...>To:

infantile scoliosis treatment Sent: Thu, December 30, 2010 11:47:46 AMSubject: Re: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.

Thanks ,

Good to know that there is someone I can talk to about this! Her degree of curve was noted on the pediatricians referral as 'about 30 degrees'. Does this mean that after the hemivertebrae is 'corrected', her spine will return to normal? How have things fared for your daughter? Holly's hemivertebra is at L3.

We are lucky enough to have a friend who is Holly's pediatrician and he is trying to get us in to see a ped orth as soon as next week, as well as an MRI. Not a good time of year to make appointments as everyone is having a summer/christmas break. He seemed quite relaxed and said that it wasn't totally urgent. Is this the case?

Thanks again for your response,

Emma

From: ansiosamjm <hemivert@...>Subject: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 31 December, 2010, 4:39 AM

Hi Emma,Sorry to hear the news about your daughter. When there is a hemivertebra, the scoliosis is called congenital scoliosis, which refers to the curve in her spine being caused by the vertebrae not being formed in a typical way. My daughter also has congenital scoliosis. She also had constipation, which seemed to be due to low muscle tone. It is usually recommended to rule out other problems that can go along with hemivertebrae, such as an echocardiogram to rule out heart issues, an MRI to rule out spinal cord issues, a renal ultrasound to rule out kidney issues and sometimes a hearing test to rule out hearing issues. The pediatrician should be able to organize these tests and I think you could take your time arranging them as if there was an urgent problem, you would have probably already seen symptoms. Did they tell you the degree of the curve? The size of the curve as well as the location of the hemivertebra will gauge what

kind of treatment will be best. You probably want to get a copy of the xray and also try to find a pediatric orthopedic who specializes in congenital scoliosis. There are several parents here who have children with hemivertebrae, I am sure they will respond as well. Glad to answer any questions you may have. >> Hi there,> > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position,

despite my request for standing. Anyway, the radiologist called me in to see him with the results and showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> Thanking you in advance for your responses,> Emma>

[Guest guest]

Emma and Jane,

It is Laimi again. I am usually very negative about casting a child with congenital scoliosis but in the case of Jane's daughter, the curve was reduced and fixed to 5 degrees and the doctor is trying to control the compensatory curves. I do see the logic in casting her at this point. Is her spine keeping steady, Jane?

From: ansiosamjm <hemivert@...>Subject: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 31 December, 2010, 4:39 AM

Hi Emma,Sorry to hear the news about your daughter. When there is a hemivertebra, the scoliosis is called congenital scoliosis, which refers to the curve in her spine being caused by the vertebrae not being formed in a typical way. My daughter also has congenital scoliosis. She also had constipation, which seemed to be due to low muscle tone. It is usually recommended to rule out other problems that can go along with hemivertebrae, such as an echocardiogram to rule out heart issues, an MRI to rule out spinal cord issues, a renal ultrasound to rule out kidney issues and sometimes a hearing test to rule out hearing issues. The pediatrician should be able to organize these tests and I think you could take your time arranging them as if there was an urgent problem, you would have probably already seen symptoms. Did they tell you the degree of the curve? The size of the curve as well as the location of the hemivertebra will gauge what

kind of treatment will be best. You probably want to get a copy of the xray and also try to find a pediatric orthopedic who specializes in congenital scoliosis. There are several parents here who have children with hemivertebrae, I am sure they will respond as well. Glad to answer any questions you may have. >> Hi there,> > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position, despite my request for standing. Anyway, the

radiologist called me in to see him with the results and showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> Thanking you in advance for your responses,> Emma>

[Guest guest]

Liami,Grace's curves got down to about 8 degree's in cast. Then we took a brace break for the summer and to allow for other testing due to her bladder issues. It ended up being a 7 month break (much too long in my opinion). So at the end of that, we were almost back to where we started, sadly, at almost 40* again. So bracing seems to be pointless. JaneFrom: L F-N

<congenitalkyphosis@...>infantile scoliosis treatment Sent: Fri, December 31, 2010 2:12:12 PMSubject: Re: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.

Emma and Jane,

It is Laimi again. I am usually very negative about casting a child with congenital scoliosis but in the case of Jane's daughter, the curve was reduced and fixed to 5 degrees and the doctor is trying to control the compensatory curves. I do see the logic in casting her at this point. Is her spine keeping steady, Jane?

From: ansiosamjm <hemivert@...>Subject: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 31 December, 2010, 4:39 AM

Hi Emma,Sorry to hear the news about your daughter. When there is a hemivertebra, the scoliosis is called congenital scoliosis, which refers to the curve in her spine being caused by the vertebrae not being formed in a typical way. My daughter also has congenital scoliosis. She also had constipation, which seemed to be due to low muscle tone. It is usually recommended to rule out other problems that can go along with hemivertebrae, such as an echocardiogram to rule out heart issues, an MRI to rule out spinal cord issues, a renal ultrasound to rule out kidney issues and sometimes a hearing test to rule out hearing issues. The pediatrician should be able to organize these tests and I think you could take your time arranging them as if there was an urgent problem, you would have probably already seen symptoms. Did they tell you the degree of the curve? The size of the curve as well as the location of the hemivertebra will gauge what

kind of treatment will be best. You probably want to get a copy of the xray and also try to find a pediatric orthopedic who specializes in congenital scoliosis. There are several parents here who have children with hemivertebrae, I am sure they will respond as well. Glad to answer any questions you may have. >> Hi there,> > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position, despite my request for standing. Anyway, the

radiologist called me in to see him with the results and showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> Thanking you in advance for your responses,> Emma>

[Guest guest]



My daughter also has congenital scoliosis, and we know that surgery is inevitable for her. However, we are on cast number 3 and her 40 degree curve is now almost straight out of cast and her kyphosis is not progressing. So while casting is not a cure for her, its certainly delaying surgery as long as we can. Our doctor was not very optimistic about casting for her and has been very suprised by the outcome. Certainly all cases are different but so glad we tried casting first!!

Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 31 December, 2010, 4:39 AM

Hi Emma,Sorry to hear the news about your daughter. When there is a hemivertebra, the scoliosis is called congenital scoliosis, which refers to the curve in her spine being caused by the vertebrae not being formed in a typical way. My daughter also has congenital scoliosis. She also had constipation, which seemed to be due to low muscle tone. It is usually recommended to rule out other problems that can go along with hemivertebrae, such as an echocardiogram to rule out heart issues, an MRI to rule out spinal cord issues, a renal ultrasound to rule out kidney issues and sometimes a hearing test to rule out hearing issues. The pediatrician should be able to organize these tests and I think you could take your time arranging them as if there was an urgent problem, you would have probably already seen symptoms. Did they tell you the degree of the curve? The size of the curve as well as the location of the hemivertebra will gauge what kind of treatment will be best. You probably want to get a copy of the xray and also try to find a pediatric orthopedic who specializes in congenital scoliosis. There are several parents here who have children with hemivertebrae, I am sure they will respond as well. Glad to answer any questions you may have. >> Hi there,> > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position, despite my request for standing. Anyway, the radiologist called me in to see him with the results and showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> Thanking you in advance for your responses,> Emma>

[Guest guest]

Emma, I would wait for the MRI until I saw the ortho to find out about the need

for a CT. Little children need to be sedated for these exams. If she needs

both, they can be done at once to avoid sedating 2x. -Laimi

Re: Diagnosed Today - Hemi Vertebrae- Sydney

Aust.

infantile scoliosis treatment

Received: Friday, 31 December, 2010, 4:39 AM

 

Hi Emma,

Sorry to

[Guest guest]

, hi! What vertebral anomaly does your girl have? I am glad to hear casting

is working 4 you. As long as the fusion can be delayed while the chest wall is

not compromised... I have heard about the spine rotating within the cast but

this usually increases the kyphosis, which is not her case. Good for you girls!

-Laimi

Re: Re: Diagnosed Today - Hemi Vertebrae- Sydney

Aust.

My daughter also has congenital scoliosis, and we know that surgery is

inevitable for her. However, we are on cast number 3 and her 40 degree curve is

now almost straight out of cast and her kyphosis is not progressing. So while

casting is not a cure for her, its certainly delaying surgery as long as we can.

Our doctor was not very optimistic about casting for her and has been very

suprised by the outcome. Certainly all cases are different but so glad we tried

casting first!!

Re: Re: Diagnosed Today - Hemi Vertebrae-

Sydney Aust.

Liami,

Grace's curves got down to about 8 degree's in cast. Then we took a brace

break for the summer and to allow for other testing due to her bladder issues.

It ended up being a 7 month break (much too long in my opinion). So at the end

of that, we were almost back to where

[Guest guest]

Your babe is a trail blaizer (sp?) for EDF casting & congenital scoli!

Please continue to keep us posted on her fab. progress!

Go ET & EDF!!

HRH

> My daughter also has congenital scoliosis, and we know that surgery is

> inevitable for her. However, we are on cast number 3 and her 40 degree

> curve is now almost straight out of cast and her kyphosis is not

> progressing. So while casting is not a cure for her, its certainly

> delaying surgery as long as we can. Our doctor was not very optimistic

> about casting for her and has been very suprised by the outcome.

> Certainly all cases are different but so glad we tried casting first!!

>

>

> Re: Diagnosed Today -

> Hemi Vertebrae- Sydney Aust.

> infantile scoliosis treatment

> Received: Friday, 31 December, 2010, 4:39 AM

>

>

>

>

>

> Hi Emma,

> Sorry to hear the news about your daughter. When there

> is a hemivertebra, the scoliosis is called congenital

> scoliosis, which refers to the curve in her spine being

> caused by the vertebrae not being formed in a typical

> way. My daughter also has congenital scoliosis. She also

> had constipation, which seemed to be due to low muscle

> tone.

> It is usually recommended to rule out other problems

> that can go along with hemivertebrae, such as an

> echocardiogram to rule out heart issues, an MRI to rule

> out spinal cord issues, a renal ultrasound to rule out

> kidney issues and sometimes a hearing test to rule out

> hearing issues. The pediatrician should be able to

> organize these tests and I think you could take your

> time arranging them as if there was an urgent problem,

> you would have probably already seen symptoms. Did they

> tell you the degree of the curve? The size of the curve

> as well as the location of the hemivertebra will gauge

> what kind of treatment will be best. You probably want

> to get a copy of the xray and also try to find a

> pediatric orthopedic who specializes in congenital

> scoliosis. There are several parents here who have

> children with hemivertebrae, I am sure they will respond

> as well. Glad to answer any questions you may have.

>

>

>

>

> >

> > Hi there,

> >

> > My name is Emma and our family lives in the south west

> suburbs of Sydney, Australia. This morning I asked my

> doctor for an x ray referral as I was sure that

> something was not straight in my daughters back (she

> is 16 months old). So an hour later we had the x ray

> and it was in a laying down position, despite my

> request for standing. Anyway, the radiologist called

> me in to see him with the results and showed me that

> my daughter has a 'hemi vertebrae' and has 'moderate

> scoliosis' as a result of this.

> > We are obvioulsy very concerned about this and are

> wanting to know what the prognosis will be. The

> pediatrician we saw said that he doubts it will be a

> neurological factor because she does not present with

> any other symptoms, except for occasional

> constipation.

> > So I guess I am wanting to know what we should do next

> and what questions we should be asking. And what is

> the most appropriate course of action in terms of

> treatment.

> > Thanking you in advance for your responses,

> > Emma

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Great advice Laimi! I cant tell you how many repeated tests we had, only

because we didnt know that some procedures/tests can be done

simultaneously.

HRH

> Emma, I would wait for the MRI until I saw the ortho to find out about the

> need for a CT. Little children need to be sedated for these exams. If

> she needs both, they can be done at once to avoid sedating 2x. -Laimi

> Re: Diagnosed Today - Hemi Vertebrae-

> Sydney Aust.

> infantile scoliosis treatment

> Received: Friday, 31 December, 2010, 4:39 AM

>

>

>  

>

>

>

>

>

> Hi Emma,

> Sorry to

>

>

[Guest guest]

Hi everyone,

We had our appointment with the spine/orthopedic surgeon today. I was really hoping he'd say that he could fix her up and we could forget all about this! Well, that's not exactly what he said, of course.

Basically, we are going to wait and see what happens in the next few months. He has said that it is a semi segmented vertebrae and he cannot tell from the x ray whether it is connected to the lower L4 vertebrae by a bar. He gave her a thorough check and felt there were no signs of neurologic anomolies and said he'd put her on the waiting list for an MRI - which will be in 6-8 MONTHS!! They only do MRI with a general anaesthetic at the two Sydney childrens hospitals and that is how long the wait is. I was going to call on Monday when Dr Angus Gray opens to get an appt with him, but todays doctor told me that that is who he operates with, so now I'm not sure whether to bother.

Needless to say, I am still concerned with what is going to happen with all of this. He said that surgery will be inevitable, but he is hoping to wait until she is 8 years old until he does that. What will happen to her spine in the meantime? In all the posts about progressive infantile scoliosis, they say time is of the essence - is this the same case?

Please tell me what you think I should do? Should I be requesting surgery sooner than that?

Emma-Jane

From: ansiosamjm <hemivert@...>Subject: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 31 December, 2010, 4:39 AM

Hi Emma,Sorry to hear the news about your daughter. When there is a hemivertebra, the scoliosis is called congenital scoliosis, which refers to the curve in her spine being caused by the vertebrae not being formed in a typical way. My daughter also has congenital scoliosis. She also had constipation, which seemed to be due to low muscle tone. It is usually recommended to rule out other problems that can go along with hemivertebrae, such as an echocardiogram to rule out heart issues, an MRI to rule out spinal cord issues, a renal ultrasound to rule out kidney issues and sometimes a hearing test to rule out hearing issues. The pediatrician should be able to organize these tests and I think you could take your time arranging them as if there was an urgent problem, you would have probably already seen symptoms. Did they tell you the degree of the curve? The size of the curve as well as the location of the hemivertebra will gauge what

kind of treatment will be best. You probably want to get a copy of the xray and also try to find a pediatric orthopedic who specializes in congenital scoliosis. There are several parents here who have children with hemivertebrae, I am sure they will respond as well. Glad to answer any questions you may have. >> Hi there,> > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position, despite my request for standing. Anyway, the

radiologist called me in to see him with the results and showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> Thanking you in advance for your responses,> Emma>

[Guest guest]

Hi Emma Jane,

Sorry, you didnt get the news you were hoping for. The good news is that

they werent able to detect any neurological issues and are ordering an

MRI. If you notice rapid progression, I wonder if Dr. A would be willing

to cast her safely until a solid plan of care is developed just to keep

her aligned and perhaps try to maintain body shape. Please mention to him

that a few ped. ortho's here in the U.S. are seeing great benefits with

some congenital cases too. I know each case (congenital & infantile) are

very different, but I would def. ask Dr. G. about his willingness to cast

a congenital case just to buy time and maintain.

I would also become a member of the congenital scoli group ran by Carmell.

The moderator/owner (a mother of a child w/ congenital)of the listserve

is very educated on the different types of congenital scoliosis, its

different procedures and may have some invaluable guidance for you.

Please continue to keep us posted and let me know if I can try to help you

further.

Hang in there.

(hugs)

HRH

> Hi everyone,

>  

> We had our appointment with the spine/orthopedic surgeon today.  I was

> really hoping he'd say that he could fix her up and we could forget all

> about this!  Well, that's not exactly what he said, of course.

> Basically, we are going to wait and see what happens in the next few

> months.  He has said that it is a semi segmented vertebrae and he cannot

> tell from the x ray whether it is connected to the lower L4 vertebrae by a

> bar.  He gave her a thorough check and felt there were no signs

> of neurologic anomolies and said he'd put her on the waiting list for an

> MRI - which will be in 6-8 MONTHS!!  They only do MRI with a general

> anaesthetic at the two Sydney childrens hospitals and that is how long the

> wait is.  I was going to call on Monday when Dr Angus Gray opens to get

> an appt with him, but todays doctor told me that that is who he operates

> with, so now I'm not sure whether to bother.

> Needless to say, I am still concerned with what is going to happen with

> all of this.  He said that surgery will be inevitable, but he is hoping

> to wait until she is 8 years old until he does that. What will happen to

> her spine in the meantime?  In all the posts about progressive infantile

> scoliosis, they say time is of the essence - is this the same case?

> Please tell me what you think I should do?  Should I be requesting

> surgery sooner than that?

>  

> Emma-Jane

>

>

>

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> From: ansiosamjm <hemivert@...>

> Subject: Re: Diagnosed Today - Hemi Vertebrae-

> Sydney Aust.

> infantile scoliosis treatment

> Received: Friday, 31 December, 2010, 4:39 AM

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> Hi Emma,

> Sorry to hear the news about your daughter. When there is a hemivertebra,

> the scoliosis is called congenital scoliosis, which refers to the curve in

> her spine being caused by the vertebrae not being formed in a typical way.

> My daughter also has congenital scoliosis. She also had constipation,

> which seemed to be due to low muscle tone.

> It is usually recommended to rule out other problems that can go along

> with hemivertebrae, such as an echocardiogram to rule out heart issues, an

> MRI to rule out spinal cord issues, a renal ultrasound to rule out kidney

> issues and sometimes a hearing test to rule out hearing issues. The

> pediatrician should be able to organize these tests and I think you could

> take your time arranging them as if there was an urgent problem, you would

> have probably already seen symptoms. Did they tell you the degree of the

> curve? The size of the curve as well as the location of the hemivertebra

> will gauge what kind of treatment will be best. You probably want to get a

> copy of the xray and also try to find a pediatric orthopedic who

> specializes in congenital scoliosis. There are several parents here who

> have children with hemivertebrae, I am sure they will respond as well.

> Glad to answer any questions you may have.

>

>

>

>

>>

>> Hi there,

>>  

>> My name is Emma and our family lives in the south west suburbs of

>> Sydney, Australia.  This morning I asked my doctor for an x ray

>> referral as I was sure that something was not straight in my daughters

>> back (she is 16 months old).  So an hour later we had the x ray and it

>> was in a laying down position, despite my request for standing. 

>> Anyway, the radiologist called me in to see him with the results and

>> showed me that my daughter has a 'hemi vertebrae' and has 'moderate

>> scoliosis' as a result of this. 

>> We are obvioulsy very concerned about this and are wanting to know what

>> the prognosis will be.  The pediatrician we saw said that he doubts it

>> will be a neurological factor because she does not present with any

>> other symptoms, except for occasional constipation. 

>> So I guess I am wanting to know what we should do next and what

>> questions we should be asking.  And what is the most appropriate course

>> of action in terms of treatment.

>> Thanking you in advance for your responses,

>> Emma

>>

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[Guest guest]

Hi ,

Yes, I do still communicate with Bert. Her daughter Bridgette is being

seen in SLC and is doing great. I am not real sure what the Shriners new

policy is on out of country patients, but its worth a call if Emma Jane is

willing and can travel. I agree 100% on 2nd, 3rd, 18th opinions though.

I'll shoot Bert an email to see if she has any ideas. Thanks !

HRH

> Hi Emma,

> - do you still communicate with Bert? Bridget's story was in the

> stories section and she lives in Australia. She may be able to give you

> some advice about how best to procede in Australia. Are you able to get a

> second opinion? I always liked to set them up and then you can cancel if

> you need to. Maybe you could come to a Shriners? How often are they

> going to take x rays?

>

>

>

>> >

>> > Hi there,

>> >  

>> > My name is Emma and our family lives in the south west suburbs of

>> Sydney, Australia.  This morning I asked my doctor for an x ray

>> referral as I was sure that something was not straight in my daughters

>> back (she is 16 months old).  So an hour later we had the x ray and

>> it was in a laying down position, despite my request for standing. 

>> Anyway, the radiologist called me in to see him with the results and

>> showed me that my daughter has a 'hemi vertebrae' and has 'moderate

>> scoliosis' as a result of this. 

>> > We are obvioulsy very concerned about this and are wanting to know

>> what the prognosis will be.  The pediatrician we saw said that he

>> doubts it will be a neurological factor because she does not present

>> with any other symptoms, except for occasional constipation. 

>> > So I guess I am wanting to know what we should do next and what

>> questions we should be asking.  And what is the most appropriate

>> course of action in terms of treatment.

>> > Thanking you in advance for your responses,

>> > Emma

>> >

>>

>>

>>  

>>

>

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>

[Guest guest]

Thanks guys,

I am willing to travel, but I have read on the Shriners website that they are not taking any international patients at this point in time.

I am getting at 2nd and 3rd opinion from Dr Angus Gray and Dr Hsu, although yesterdays doctor told us that he operates with Dr Gray, so I'm not sure he will say anything different to what we have heard.

Thanks again for your time, and respones,

Emma-Jane

From: heather@... <heather@...>Subject: Re: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 7 January, 2011, 5:48 AM

Hi ,Yes, I do still communicate with Bert. Her daughter Bridgette is beingseen in SLC and is doing great. I am not real sure what the Shriners newpolicy is on out of country patients, but its worth a call if Emma Jane iswilling and can travel. I agree 100% on 2nd, 3rd, 18th opinions though. I'll shoot Bert an email to see if she has any ideas. Thanks !HRH> Hi Emma,> - do you still communicate with Bert? Bridget's story was in the> stories section and she lives in Australia. She may be able to give you> some advice about how best to procede in Australia. Are you able to get a> second opinion? I always liked to set them up and then you can cancel if> you need to. Maybe you could come to a Shriners? How often are they> going to take x rays?> >> >> >>> > Hi there,>> >  >> > My name is Emma and our family lives in the south west suburbs of>> Sydney, Australia. This morning I asked my doctor for an x ray>> referral as I was sure that something was not straight in my daughters>> back (she is 16 months old). So an hour later we had the x ray and>> it was in a laying down position, despite my request for standing. >> Anyway, the radiologist called me in to see him with the results

and>> showed me that my daughter has a 'hemi vertebrae' and has 'moderate>> scoliosis' as a result of this. >> > We are obvioulsy very concerned about this and are wanting to know>> what the prognosis will be. The pediatrician we saw said that he>> doubts it will be a neurological factor because she does not present>> with any other symptoms, except for occasional constipation. >> > So I guess I am wanting to know what we should do next and what>> questions we should be asking. And what is the most appropriate>> course of action in terms of treatment.>> > Thanking you in advance for your responses,>> > Emma>> >>>>>>>  >>>>>

[Guest guest]

Emma-Jane,I'm so sorry you are going through this. I personally do think a 6-8 month wait for an MRI is way too long if the case is progressive. I do understand I know very little about congenital cases and I'm sure you will get much better advice on that on the other group mentioned, but I know that had we waited the 4+ months it would have taken to normally schedule Bex's 2 MRIs here in L.A. at Children's Hospital, we would have been facing surgery beginning at age 2-3. I would fight, being "politely pushy" to get in sooner. Hope this helps in some way, and hang in there. We got into 2 cancellation slots- if your hospital has those lists, ask to be on them, and keep calling and explaining the urgency of the condition.Heidi, Bexon's Mommy, (3.5 years

old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Emma-Jane Ellis <emmajaneellis@...>infantile scoliosis treatment Sent: Thu, January 6, 2011 12:44:39 PMSubject: Re: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.

Thanks guys,

I am willing to travel, but I have read on the Shriners website that they are not taking any international patients at this point in time.

I am getting at 2nd and 3rd opinion from Dr Angus Gray and Dr Hsu, although yesterdays doctor told us that he operates with Dr Gray, so I'm not sure he will say anything different to what we have heard.

Thanks again for your time, and respones,

Emma-Jane

From: heather@... <heather@...>Subject: Re: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 7 January, 2011, 5:48 AM

Hi ,Yes, I do still communicate with Bert. Her daughter Bridgette is beingseen in SLC and is doing great. I am not real sure what the Shriners newpolicy is on out of country patients, but its worth a call if Emma Jane iswilling and can travel. I agree 100% on 2nd, 3rd, 18th opinions though. I'll shoot Bert an email to see if she has any ideas. Thanks !HRH> Hi Emma,> - do you still communicate with Bert? Bridget's story was in the> stories section and she lives in Australia. She may be able to give you> some advice about how best to procede in Australia. Are you able to get a> second opinion? I always liked to set them up and then you can cancel if> you need to. Maybe you could come to a Shriners? How often are they> going to take x rays?> >> >> >>> > Hi there,>> >  >> > My name is Emma and our family lives in the south west suburbs of>> Sydney, Australia. This morning I asked my doctor for an x ray>> referral as I was sure that something was not straight in my daughters>> back (she is 16 months old). So an hour later we had the x ray and>> it was in a laying down position, despite my request for standing. >> Anyway, the radiologist called me in to see him with the results

and>> showed me that my daughter has a 'hemi vertebrae' and has 'moderate>> scoliosis' as a result of this. >> > We are obvioulsy very concerned about this and are wanting to know>> what the prognosis will be. The pediatrician we saw said that he>> doubts it will be a neurological factor because she does not present>> with any other symptoms, except for occasional constipation. >> > So I guess I am wanting to know what we should do next and what>> questions we should be asking. And what is the most appropriate>> course of action in terms of treatment.>> > Thanking you in advance for your responses,>> > Emma>> >>>>>>>  >>>>>

[Guest guest]

Hi Katrina,

Thanks for your info. I am going to call Dr A Gray on Monday when he re-opens after the christmas break, hopefully the wait will not be too long to see him.

How is your daughter going? Was the spinal cord atrophy caused by the curve, or the other way round?

Thanks again,

Emma

From: kat140472 <katrina.hall@...>Subject: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 7 January, 2011, 9:57 PM

Hi Emma, my daughter also has infantile scoliosis and after seeking opinions in Melbourne (we are based in Melbourne) and Sydney (Dr A G) we decided to go with Dr G as from the research we have done and talking to other parents in Australia, he is the most closely aligned to following Mehta's method. The other more experienced Mum's will give advice on the forum re Early Treatment and waiting etc. I really valued the advice received. If an MRI is needed, it will happen. If it can't happen in Sydney in less than 6 months, they could do in Melbourne. I would suggest getting a 2nd opinion from Dr G. Although the specialists in Oz do seem to work closely as a group, there thoughts on treatment do differ.Good luck and happy to speak off line if you like. Katrina (Mum to Isabelle 2.5 years - 73 degree curve, spinal cord atrophy, 73 degrees upper thoracic curve, down to mid 30's in 1st cast)> > >> > > Hi there,> > >  > > > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position, despite my request for standing. Anyway, the radiologist called me in to see him with the results and showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > > > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it

will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > > > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> > > Thanking you in advance for your responses,> > > Emma> > >> > > > > >  > >>

[Guest guest]

Thanks again Katrina,

So how did you find out about Isabelle's scoliosis? How did the spinal cord atrophy present itself? Sorry to ask so many questions, I am trying to find out whatever I can. Quite a few people have mentioned weakness or asymmetry in their children with scoliosis, just wondering if that was the case with you?

Emma-Jane

From: kat140472 <katrina.hall@...>Subject: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Saturday, 8 January, 2011, 2:18 PM

Hi Emma, his assistant Rosemary is very helpful. Let her know your daughter's age and the current diagnosis. He does review and prioritise appointments based on urgency.Besides breaking her arm falling out of bed on holidays at the in-laws earlier this week.... Belle is doing really well. Such a positive attitude and has adapted her ways to be able to play with, climb etc everything she used to. Nappy leaks, under arm rubbing and falls have been the trickiest part for us so far. We saw the head neurosurgeon at the Royal Childrens hospital in Melb and she believes the spinal cord atrophy has caused the curvature as the curve is where the atrophy is and thinks it was just one of those things that can happen in utero. They were concerned there may be a boney bar and we had a CT as well which ruled that out.The 1st cast has caused dramatic improvement - down from a 73 degree curve to mid 30's (Dr G is not keen on getting hung up

on the numbers and hence I don't have a specific number of correction at this point). We are having another MRI in Sydney at the same time as the next cast - 21st Feb to see what the impact has been on the spinal cord through the casting. Dr G ( & the surgeon we saw in Melbourne) both think she will end up having surgery down the track and have been quite matter of fact about it due to the severity of her curve, her age commencing casting & the complication of the spinal cord atrophy. We're just being positive and hoping that at worse we delay surgery as long as possible and at best we do end up with a cure for the infantile scoliosis through casting. Look forward to hearing how you go with Dr G.CheersKatrina> > > >> > > > Hi there,> > > >  > > > > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position, despite my request for standing. Anyway, the radiologist called me in to see him with the results and

showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > > > > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > > > > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> > > > Thanking you in advance for your responses,> > > > Emma> > > >> > > > > > > > >  > > >> >>

[Guest guest]

Hi ,Can you please tell me how old your daughter is and when you started casting? - Also who is the ortho you are seeing?My daughter will be 5 in May and has congenital scoliosis with 49 degree curvature that has not changed in the past two years. We know surgery is inevitable however I did not know that casting would help for congenital scoliosis. Please reply with more info. Appreciate your help!!!Thanks,MinaFrom: Bancsy <bancsy@...>infantile scoliosis treatment Sent: Sat, January 1, 2011 10:46:30 AMSubject: Re: Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.



My daughter also has congenital scoliosis, and we know that surgery is inevitable for her. However, we are on cast number 3 and her 40 degree curve is now almost straight out of cast and her kyphosis is not progressing. So while casting is not a cure for her, its certainly delaying surgery as long as we can. Our doctor was not very optimistic about casting for her and has been very suprised by the outcome. Certainly all cases are different but so glad we tried casting first!!

Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Received: Friday, 31 December, 2010, 4:39 AM

Hi Emma,Sorry to hear the news about your daughter. When there is a hemivertebra, the scoliosis is called congenital scoliosis, which refers to the curve in her spine being caused by the vertebrae not being formed in a typical way. My daughter also has congenital scoliosis. She also had constipation, which seemed to be due to low muscle tone. It is usually recommended to rule out other problems that can go along with hemivertebrae, such as an echocardiogram to rule out heart issues, an MRI to rule out spinal cord issues, a renal ultrasound to rule out kidney issues and sometimes a hearing test to rule out hearing issues. The pediatrician should be able to organize these tests and I think you could take your time arranging them as if there was an urgent problem, you would have probably already seen symptoms. Did they tell you the degree of the curve? The size of the curve as well as the location of the hemivertebra will gauge what kind of treatment will be best. You probably want to get a copy of the xray and also try to find a pediatric orthopedic who specializes in congenital scoliosis. There are several parents here who have children with hemivertebrae, I am sure they will respond as well. Glad to answer any questions you may have. >> Hi there,> > My name is Emma and our family lives in the south west suburbs of Sydney, Australia. This morning I asked my doctor for an x ray referral as I was sure that something was not straight in my daughters back (she is 16 months old). So an hour later we had the x ray and it was in a laying down position, despite my request for standing. Anyway, the radiologist called me in to see him with the results and showed me that my daughter has a 'hemi vertebrae' and has 'moderate scoliosis' as a result of this. > We are obvioulsy very concerned about this and are wanting to know what the prognosis will be. The pediatrician we saw said that he doubts it will be a neurological factor because she does not present with any other symptoms, except for occasional constipation. > So I guess I am wanting to know what we should do next and what questions we should be asking. And what is the most appropriate course of action in terms of treatment.> Thanking you in advance for your responses,> Emma>