Re: Diagnosed Today - Hemi Vertebrae- Sydney Aust.

[Guest guest]

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!

Try to get in touch with the congenitalscoliosis group.congenitalscoliosissupport

There are several types of scoliosis, classified by what causes it. If your girl really has a hemi vertebra, it is considered congenital scoliosis. If she is only 16 months, she may be too young to receive the radiation of a CT scan; you would need to ask about this. The reason I suggest the doctors have to look more into this is because when my son was diagnosed at 7 months of age, they also thought he had a hemivertebra. That was what the x-rays showed, but in his case, there were more anomalies. This is not always the case, so don't panic. Actually, we are a very special case.

If it is only a hemi, she may not even need anything done now or in the future. Sometimes, hemi vertebrae fuse by themselves with the vertebra above or below and curves don't progress. Ask where it is: if it is in the thoracic, lumbar, or cervical spine. They should even be able to tell you the number of the vertebra. C1 - C7 for cervical, T1 - T12 for thoracic, and shame on me, but still have not learned the names for the lumbar section.

Is she walking already? Any other medical conditions? Have you been referred to a geneticist? Most geneticist I have met freaked me out at the beginning, but the good thing about seeing one is that they will look at other systems just to make sure everything is just fine. One step at a time.

Really, contact the congenital group. There are about 100 parents there, all with kids with hemivertebrae, lateral bars, etc. Now, excuse me for being so direct about this but casting will not help if the anomaly is congenital because a cast cannot fix a bone that did not form completely and may push the spine to go one way or the other. The kids I have met with congenital scoliosis who have been casted only got more malformed ribs and chest walls from the casts. It works for infantile and ideopathic scoliosis, but not for congenital scoliosis. Still, some doctors may offer that choice, but always see 2 or 3 pediatric orthopedic surgeons before making any decision, even for a cast.

My best wishes. -Laimi

From: Emma-Jane Ellis <emmajaneellis@...>Subject: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Date: Thursday, December 30, 2010, 12:21 AM

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 Laimi,

Thanks for your response. Yes, Holly is walking, she started just a few weeks after her first birthday. She doesn't seem to have any other issues and the pediatrician seems to think it is an isolated case. She certainly talks alot, which we love! What sort of things shold I be looking out for? He tested her reflexes in her feet when we saw him the other day.

Holly had a Single Umbilical Artery and as a result she was monitored every week or two throughout the pregnancy. Our high risk obstetrician often checked her heart and kidneys as these are associated with SUA and said they looked fine. I do see that there may be some correlation between the umbilical cord anomaly and the spinal development, I am just really hoping that nothing else is involved. Fingers crossed. Touch wood.

I can see what you mean about casting - I have done a lot of reading and the only options seem to be 'wait and see' or surgery. I am really hoping to get an MRI appointment soon so we hopefully rule out any other problems.

Please let me know what things I should be looking out for in regards to other anomolies.

Her hemivertebra is at L3 (lumbar) and they think the curve is about 30 degrees.

What other anomolies were associated with your son, if you don't mind me asking.

Thanks,

Emma

From: Emma-Jane Ellis <emmajaneellis@...>Subject: Diagnosed Today - Hemi Vertebrae- Sydney Aust.infantile scoliosis treatment Date: Thursday, December 30, 2010, 12:21 AM

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,

It seems that she is doing well and would not urgently need treatment, for

example, sometimes the curve will hold steady and not progress. They will

probably want to monitor with x rays at regular intervals to make sure the curve

is not increasing too much. There is some room for error of measurement, so try

to not to freak out about an increase of a few degrees. I think the MRI is

important. I read your post on the congenital site. This site tends to be more

active as there are more people who are actively seeking treatment for their

child. With congenital scoliosis, there are many parents who come to the site

and after an initial diagnosis and then there is not a lot of treatment going

on, so not a lot of posts.

I read about the single artery umbilical cord and we had that too. Has your

daughter always shown a preference for one hand over the other? Our daughter

had a small amount of fluid in her spinal cord, called a syrinx. It was thought

that this is why she had an extra thumb and she has an extra clavicle on that

side as well. She did not move her right side as well as the left and is left

handed. She has fused ribs also, all on the right side. Her curve improved

from 45 degrees at age 18 months to twenty something degrees at age two, her low

muscle tone improved and she was able to carry herself better. This is not

typical though. Over the years her curve has moved back and forth from the

twenties to the forties and she wears a brace to control the compensatory lumbar

curve that she was developing. She is eight years old currently. She has had

speech, occupational and physical therapy over the years and is in warm water PT

now. She is doing really well and does irish dancing as a sport; but she hates

her brace and if there would have been an option of fixing her back in one

surgery, I think we would go for it.

I have met people over the years who have proceeded with removal of a hemi in

the lumbar area and then never hear from them again, because they have resolved

the issue by removing the hemi.

> >

> > 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,

It seems that she is doing well and would not urgently need treatment, for

example, sometimes the curve will hold steady and not progress. They will

probably want to monitor with x rays at regular intervals to make sure the curve

is not increasing too much. There is some room for error of measurement, so try

to not to freak out about an increase of a few degrees. I think the MRI is

important. I read your post on the congenital site. This site tends to be more

active as there are more people who are actively seeking treatment for their

child. With congenital scoliosis, there are many parents who come to the site

and after an initial diagnosis and then there is not a lot of treatment going

on, so not a lot of posts.

I read about the single artery umbilical cord and we had that too. Has your

daughter always shown a preference for one hand over the other? Our daughter

had a small amount of fluid in her spinal cord, called a syrinx. It was thought

that this is why she had an extra thumb and she has an extra clavicle on that

side as well. She did not move her right side as well as the left and is left

handed. She has fused ribs also, all on the right side. Her curve improved

from 45 degrees at age 18 months to twenty something degrees at age two, her low

muscle tone improved and she was able to carry herself better. This is not

typical though. Over the years her curve has moved back and forth from the

twenties to the forties and she wears a brace to control the compensatory lumbar

curve that she was developing. She is eight years old currently. She has had

speech, occupational and physical therapy over the years and is in warm water PT

now. She is doing really well and does irish dancing as a sport; but she hates

her brace and if there would have been an option of fixing her back in one

surgery, I think we would go for it.

I have met people over the years who have proceeded with removal of a hemi in

the lumbar area and then never hear from them again, because they have resolved

the issue by removing the hemi.

> >

> > 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,

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

treatment of progressive infantile scoliosis, " by Mehta and make an appt.

with Dr. G at Sydney Childrens Hospital, if possible. I cant comment on

the hemi vertebrae situation, as my daughter had infantile, but there are

others on CAST who more familiar w/ congenital scoli treatment scenario's.

Please keep us posted and know that you are doing the right thing by

learning as much as possible about your babes diagnosis and potential

treatment options. Keep the questions coming!

Sincerely,

HRH

> 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]

Yes, an EDF cast cannot fix a bone abnormality. But, a properly applied

EDF cast w/ Mehtas windows can buy invaluable growth time & maintain or

even correct a bit a congenital curve (not the malformed bone). The cast

wont cure the scoli or malformed bone, but is a a very effective approach

when trying to maintain the childs thorax, body shape & over all

alignment. This clarification is necessary because many docs are now more

open minded to casting congenital babes and are seeing how effective a

properly applied series of EDF casts can be for many congenital scoli

kids. Not all congenital kiddos will benefit, but some of them can

benefit greatly if the EDF casting is done properly.

HTH's

HRH

>

>

>

> Hi Emma!

> Try to get in touch with the congenitalscoliosis group.

> congenitalscoliosissupport

> There are several types of scoliosis, classified by what causes it. If

> your girl really has a hemi vertebra, it is considered congenital

> scoliosis. If she is only 16 months, she may be too young to receive the

> radiation of a CT scan; you would need to ask about this. The reason I

> suggest the doctors have to look more into this is because when my son was

> diagnosed at 7 months of age, they also thought he had a hemivertebra.

> That was what the x-rays showed, but in his case, there were more

> anomalies. This is not always the case, so don't panic. Actually, we are a

> very special case.

> If it is only a hemi, she may not even need anything done now or in the

> future. Sometimes, hemi vertebrae fuse by themselves with the vertebra

> above or below and curves don't progress. Ask where it is: if it is in the

> thoracic, lumbar, or cervical spine. They should even be able to tell you

> the number of the vertebra. C1 - C7 for cervical, T1 - T12 for thoracic,

> and shame on me, but still have not learned the names for the lumbar

> section.

> Is she walking already? Any other medical conditions? Have you been

> referred to a geneticist? Most geneticist I have met freaked me out at the

> beginning, but the good thing about seeing one is that they will look at

> other systems just to make sure everything is just fine. One step at a

> time.

> Really, contact the congenital group. There are about 100 parents there,

> all with kids with hemivertebrae, lateral bars, etc. Now, excuse me for

> being so direct about this but casting will not help if the anomaly is

> congenital because a cast cannot fix a bone that did not form completely

> and may push the spine to go one way or the other. The kids I have met

> with congenital scoliosis who have been casted only got more malformed

> ribs and chest walls from the casts. It works for infantile and ideopathic

> scoliosis, but not for congenital scoliosis. Still, some doctors may offer

> that choice, but always see 2 or 3 pediatric orthopedic surgeons before

> making any decision, even for a cast.

> My best wishes. -Laimi

>

>

>

>

> From: Emma-Jane Ellis <emmajaneellis@...>

> Subject: Diagnosed Today - Hemi Vertebrae- Sydney

> Aust.

> infantile scoliosis treatment

> Date: Thursday, December 30, 2010, 12:21 AM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> 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,

- 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 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]

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.

Cheers

Katrina

> > > >

> > > > 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

> > > >

> > >

> > >

> > >  

> > >

> >

>