???

[Guest guest]

Thanks, Carol.

Well, didn't get a tube placed as a solution, rather to keep him alive. If he hadn't had one for the last 2 weeks he would probably have starved to death, for he isn't drinking and eating at all anymore. I think the situation is way past fiddling around with dietary measures. The enteral food he is getting now is called "Frebini", a liquid containing all kinds of SCD incompatible things like oat fiber, maltodextrine, lactose etc., but still he hasn't been showing any aversion (yet). I'll talk to the doctors about having him tested for food intolerances/allergies, as he reacts badly to yoghurt, also the SCD type, I'm afraid. We believe that the SCD helped him for some time because it is a very light diet, but it didn't help his underlying problem, which Saskia and I think might be caused by delayed gastric emptying (an example: we fed him a yoghurt on hospital-day-two because the docs wanted to record how he reacts to normal food - they don't believe in SCD - and astonishingly he gobbled it up without hesitating - he really enjoyed it - but then he was sick with it from 8am to 6pm, so that means it got stuck in his tummy without moving further down). So next to food allergies the next thing we'll try to find out if the specialists are willing to try erythromycin, a safe motility drug. I really, really hope that this will turn out to be the solution, otherwise he's in for surgery...

Trying to keep our peckers up,

, with Saskia, Nora-Jane & /DS/GERD/ASDII

[DownSyndromeInfoEx change] ???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

[Guest guest]

Hello Sue,

that's very kind of you. is 22 months old, so he probably wouldn't fully appreciate the cards, but we certainly would!

The hospital address is:

Universitäts-Kinderklinik

Pavillion Süd

Müller - room # 24

Steinwiesstrasse 75CH-8032 Zürich

Thank you for your prayers and thoughts, and thanks for the words of encouragement to everyone else on the list!

with Saskia, Nora-Jane & /DS/GERD/ASDII

Switzerland

???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

[Guest guest]

Hi ,

You don't know me but I've been reading your posts the last couple of days. I just wanted you to know how sorry I am that you and your family are going through this. Our thoughts and prayers go out to you and your family.

The family - Judy, , , & Reece

[DownSyndromeInfoEx change] ???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

[Guest guest]

I think you have chosen a perfect name for your son:-) My dtr's name is Muhs with the umelot (sp) over the U. They really flow don't they? prayers for you and your family.

Sherry

[Guest guest]

I am so sorry if you took my note to be making light of your situation or seeming not to realize how serious this all is. I DO!!! I am really worried about your little guy. I should have spent more time wording this and remembering I am talking to a very tired, and I am sure weary of it all man. I apologize for that.

I was thinking out loud about the wisdom of a surgical intervention with the G tube if the root cause had not been found. NG tubes are certainly lifesavers and I am very thankful for them. has made use of them on many occasions too. They work! They are an easy and I thank the Good Lord for the alternate means to get food into a child. :-) And am doubly thankful that it's keeping alive.

I really have no idea nor solutions to offer other then just guessing, which I do cause I care, not cause I am questioning your decisions there. There just has to be a solution to this all, and I will keep praying you guys find it.

Just don't forget how much SCD helped him, and remember how important food is. It can be the best medicine for a person and have the most profound effect. Even with life threatening matters. That is how Elaine got started promoting the diet. It literally saved her daughter's life as what she was eating was killing her and modern medicine had nothing left but surgery to offer her.

Keep us up to date as you can please! Been very worried and even more so when we didn't hear from you.

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

[DownSyndromeInfoEx change] ???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

[Guest guest]

Andy (35 w/DS) and his family are praying for your son and his family. God Bless! Carol in IL <ps1272000@...> wrote: !my note to be making light of your situation or seeming not to realize how serious this all is. I DO!!! I am really worried about your little guy. I should have spent more time wording this and remembering I am talking to a very tired, and

I am sure weary of it all man. I apologize for that. I was thinking out loud about the wisdom of a surgical intervention with the G tube if the root cause had not been found. NG tubes are certainly lifesavers and I am very thankful for them. has made use of them on many occasions too. They work! They are an easy and I thank the Good Lord for the alternate means to get food into a child. :-) And am doubly thankful that it's keeping alive. I really have no idea nor solutions to offer other then just guessing, which I do cause I care, not cause I am questioning your decisions there. There just has to be a solution to this all, and I will keep praying you guys find it. Just don't forget how much SCD helped him, and remember how important food is. It can be the best medicine for a person and have the most profound effect.

Even with life threatening matters. That is how Elaine got started promoting the diet. It literally saved her daughter's life as what she was eating was killing her and modern medicine had nothing left but surgery to offer her. Keep us up to date as you can please! Been very worried and even more so when we didn't hear from you. Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS. My problem is not how I look. It's how you see me. [DownSyndromeInfoEx change] ??? How are things going? Find out anything? Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS. My problem is not how

I look. It's how you see me.

[Guest guest]

Hey, I don't want to beat a dead horse or sound repetitious but I

only know on DS what all I've learned from Evan and this email brings

back some memories.

Evan got to spend 6 weeks (from 6 weeks old to 3 months old) in the

hospital due to back surgery that got infected and then he had

pneumonia, bronchiolitis, congestive heart failure, etc. He ended up

on an NG tube for 5 months --his problem was he could not keep down

large volumes of milk --in fact he was limited to 80 cc's every 3

hours --for weeks. We kept trying to inch up the volume but then he

would just throw it all up so I got real good at learning his body

language and knowing just how much he would take and when to stop.

At 3-5 months old this is not enough breastmilk to grow on so we

upped the calories by adding formula to it. The problem was his

heart --which supposedly was just a PDA that hadn't closed plus a

small VSD and a small ASD that supposedly wasn't going to need

surgery. WRONG! At 5 months after many bouts of congestive heart

failure and lots of lasix and still unable to handle more than 90

cc's of milk every 3 hours, he had open heart surgery on those 3

holes. He started getting better after that.

We even measured his cc's of water to flush the NG tube --he could

only take 3 cc's to flush--or was it 2? Instead of the usual 5 --we

had to measure every little cc of meds, everything because if you

went over the amount of liquid his heart could process, he vomited it

up and was in congestive heart failure.

Now I know this may not be this but . . . does he keep down smaller

volumes? You might have to do like our cardiologists did and find

the safe amount and figure out how to get him to gain on it till the

heart can get fixed. This evidently is rather rare in that even a

lot of the nurses and staff on the cardilogy floor didn't realize

they would put Evan into heart failure by doing what they usually do

and hooking up IV's --I saved his life once by insisting they get the

card there before they started the IV --he apologized and said they

work on reflex and that's what you do for normal folks --but not for

Evan. He was very fluid sensitive most of his first year --even

right after heart surgery --so much so that it still makes me a

little nervous when they want to hook him up now--like after

surgeries, etc.

In our case, they said most kids with holes in their heart like his

will outgrow them and not need surgery but for some reason kids with

DS don't always do so well. In our case, they thought Evan's other

problems with the back infection, pneumonia, surgery, etc. may have

overtaxed his heart and the holes leaked more than expected making

the heart and lungs work harder. His pulmonary hypertension was

severe at this point at 92 --right before his heart surgery. It came

down to moderate levels of 52 after surgery and took 6 months or so

of oxygen to come down to more normal 20's.

Also during this time --1 month to 5 months --till he had open heart

surgery, he got every flu and virus floating around --we got where we

went nowhere so he could be healthy enough for his surgery. EVERY

time we took him among people, he got sick enough to need

hospitalization. They told me this would be the case till his heart

was repaired and it was.

If this doesn't apply at all forget it. Maybe it will help someone

else. This time in my life is just etched on my brain really strong

and I think of it anytime someone talks of a baby with DS having

problems keeping food down.

Priscilla K

>>>>>>Posted by: " Müller "

Thanks for asking, Carol. I'm afraid 's

not well at all at the moment. He's been hospitalized now for a bit

more than 2 weeks and the doctors still could'nt find out why he

can't keep any

food down. Saskia and I are taking turns staying up at the hospital

with

him, which has been also very tiring for us. And of course organizing

a

place to stay for his bigger sister Nora-Jane also isn't very easy...

Right now he has a NG-tube in (a flexible thin spaghetti-like tube

going

into his stomach by way of his nose), but if his condition won't

resolve

very soon he'll have to get a G- or J-tube inserted. And what's

making

matters worse - all of us, including , have caught a stomach flu

bug

from the hospital! So right now it seems we've all arrived at the

lowest

possible point, but you never know, do you? Touch wood.

>>>>>>>

Priscilla Kendrick, married 29 years to Darrel and parents of 9 kids including

Evan, 10, born with Down Syndrome and Spina Bifida

" My strength is made perfect in weakness. "

" My grace is sufficient. " II Corinthians 12:9 KJV

__________________________________________________

[Guest guest]

get well wishes from cyberspace richard. not much help i know, hospitals such a bummer but thinking of your family, hope the get well vibes reach jamie.

best,

angie mendoza

mom to bea kyla and luke

???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

[Guest guest]

,

you are in our prayers...we are praying for your son's health. May the Lord comfort you and your family meanwhile.

kk

-- Re: ???

Thanks, Carol.

Well, didn't get a tube placed as a solution, rather to keep him alive. If he hadn't had one for the last 2 weeks he would probably have starved to death, for he isn't drinking and eating at all anymore. I think the situation is way past fiddling around with dietary measures. The enteral food he is getting now is called "Frebini", a liquid containing all kinds of SCD incompatible things like oat fiber, maltodextrine, lactose etc., but still he hasn't been showing any aversion (yet). I'll talk to the doctors about having him tested for food intolerances/allergies, as he reacts badly to yoghurt, also the SCD type, I'm afraid. We believe that the SCD helped him for some time because it is a very light diet, but it didn't help his underlying problem, which Saskia and I think might be caused by delayed gastric emptying (an example: we fed him a yoghurt on hospital-day-two because the docs wanted to record how he reacts to normal food - they don't believe in SCD - and astonishingly he gobbled it up without hesitating - he really enjoyed it - but then he was sick with it from 8am to 6pm, so that means it got stuck in his tummy without moving further down). So next to food allergies the next thing we'll try to find out if the specialists are willing to try erythromycin, a safe motility drug. I really, really hope that this will turn out to be the solution, otherwise he's in for surgery...

Trying to keep our peckers up,

, with Saskia, Nora-Jane & /DS/GERD/ASDII

[DownSyndromeInfoEx change] ???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

[Guest guest]

We have been very happy with Dr. Thometz, although I know he would not cast

another member of this sites child....

***I am curious as to why Dr. Thometz will not cast a child in need, from this

group?

HRH

New Member

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

[Guest guest]

We have been very happy with Dr. Thometz, although I know he would not cast

another member of this sites child....

***I am curious as to why Dr. Thometz will not cast a child in need, from this

group?

HRH

New Member

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

[Guest guest]

I think was referring to Max. When we saw Dr. Thometz last

summer at 12 months of age, he said Max's curve was very rigid

(which Dr. Sturm-Shriner's Chicago has indicated and proved

otherwise).

Dr. Thometz did not want to recommend surgery at 12 months of age.

When I asked about casting he said " we can try, but I've never

really done it before. " We didn't want Max to be his experimental

case.

His comment really confuses me as 's child is casted by

him.

,

Dr. Thometz may be quiet and I agree not the best bedside manner,

but I really wasn't pleased with our experience all together with

Children's Milwaukee from support staff to providers. I do have to

say it was a hot summer friday afternoon; who knows it could have

been a rough week? His Physician Assitant was awesome. If it wasn't

for her I may have left there in tears.

Was Dr. Thometz trained by Dr. Mehta; or has he attended any of the

ETTP? I am just interested in knowing our resources, especially for

us here in the midwest as we have had a challengng time locating an

orthopedist who wanted and knew how to cast.

All in all, there are few doctors out there who are able to help our

children with casting and Bless each one of them.

Aekta

>

> We have been very happy with Dr. Thometz, although I know he would

not cast another member of this sites child....

>

> ***I am curious as to why Dr. Thometz will not cast a child in

need, from this group?

>

> HRH

> New Member

>

> Hello,

> I'm new to the group. I'm very glad I found you - there's not a

lot of

> info. on infantile scoliosis out there. My son, Noah, has been

> diagnosed with Infantile Scoliosis. He is 21 months old. We were

> referred by his pediatrican to Dr. Lonstein at TC Spine Center

in

> Mpls. I'm told he is a good doctor. We've had one appt. so far.

> Noah's curve is 30 degrees and his RVAD is 20. The doctor says

Noah

> is " right on the fence " as far as determining whether or not his

curve

> is likely to progress. We are to go back in 3 months to have a

new

> set of x-rays. If he is progressing - I will definately want to

> discuss casting as an option. A lot of what I'm reading has

indicated

> that Noah's numbers are not good, so I'm trying to prepare

myself for

> the worst without panicking. Any thoughts or advice is

appreciated.

> Thanks!

>

>

>

[Guest guest]

I think was referring to Max. When we saw Dr. Thometz last

summer at 12 months of age, he said Max's curve was very rigid

(which Dr. Sturm-Shriner's Chicago has indicated and proved

otherwise).

Dr. Thometz did not want to recommend surgery at 12 months of age.

When I asked about casting he said " we can try, but I've never

really done it before. " We didn't want Max to be his experimental

case.

His comment really confuses me as 's child is casted by

him.

,

Dr. Thometz may be quiet and I agree not the best bedside manner,

but I really wasn't pleased with our experience all together with

Children's Milwaukee from support staff to providers. I do have to

say it was a hot summer friday afternoon; who knows it could have

been a rough week? His Physician Assitant was awesome. If it wasn't

for her I may have left there in tears.

Was Dr. Thometz trained by Dr. Mehta; or has he attended any of the

ETTP? I am just interested in knowing our resources, especially for

us here in the midwest as we have had a challengng time locating an

orthopedist who wanted and knew how to cast.

All in all, there are few doctors out there who are able to help our

children with casting and Bless each one of them.

Aekta

>

> We have been very happy with Dr. Thometz, although I know he would

not cast another member of this sites child....

>

> ***I am curious as to why Dr. Thometz will not cast a child in

need, from this group?

>

> HRH

> New Member

>

> Hello,

> I'm new to the group. I'm very glad I found you - there's not a

lot of

> info. on infantile scoliosis out there. My son, Noah, has been

> diagnosed with Infantile Scoliosis. He is 21 months old. We were

> referred by his pediatrican to Dr. Lonstein at TC Spine Center

in

> Mpls. I'm told he is a good doctor. We've had one appt. so far.

> Noah's curve is 30 degrees and his RVAD is 20. The doctor says

Noah

> is " right on the fence " as far as determining whether or not his

curve

> is likely to progress. We are to go back in 3 months to have a

new

> set of x-rays. If he is progressing - I will definately want to

> discuss casting as an option. A lot of what I'm reading has

indicated

> that Noah's numbers are not good, so I'm trying to prepare

myself for

> the worst without panicking. Any thoughts or advice is

appreciated.

> Thanks!

>

>

>

[Guest guest]

I was referring to Aekta and Max and remembered that you had a bad experience.

I am very curious about his comment on casting and wonder if it was because in

his opinion Max had a rigid curve. He is not Mehta trained, but Dr. Mehta did

see our daughter at the Philly ETTP and said that our daughter is not a typical

scoliosis kid. She thinks that her scoliosis is muscular based. We had muscle

biopsy tests done and she does not have any known disorder--which is good and

yet still very frustrating because it is clear that she does have some type of

neuro/muscular disorder--a rare un-named one according to our geneticist and

neurologist. With that said, we opted to stay with Dr. Thometz over switching

to Philly for casting for 2 reasons. 1. Convenience, or busy child does not

fly well nor ride well on long car trips and 2. Dr. Thometz gets the same

results (he got her to a zero in cast every time--the last time he even pushed

her 2 degrees the opposite way).

Dr. Thometz does not use the Mehta type of table. I honestly don't know what

kind of table (if any) he uses. I do know he pushes and holds her in place

while the team casts and wraps. I also know that our daughter is not the only

kid he's casted. When she was first diagnosed our pediatrician told us that she

had just sent another infant (8 months old) to him and that he casted her and

she was doing great. I never followed up on who that was because at that point

we were at the watch and wait at 19 degrees.

I agree with you on the not so good staff--I have often left there wanting to

cry--however I will say that was only recently--he's had staff turnover with

the exception of Annette--the beloved PA. Also it's only the scheduling front

desk people. When you do casting it is a different team which has always been

wonderful. I think once his clerical team gets the hang of how it works it

should improve. We've been there 3 years and it has only been bad since Nov.

All of that said I am happy with the work he does and willing to deal with the

other issues for him. Also we are now in a brace which Dr. Mehta said was a

good one--and it was made by the Children's brace person. Aekta I know you are

happy with your doc in Chicago, but one thing that Dr. Thometz does differently

than most--which might benefit Max and which your doc may be willing to do-- is

he changes the cast every 30 days. His philosophy is that you do your best to

correct, and then in 30 days push it to do better. Our first go around our

daughter was not so flexible and it took 3 casts to get her to 0. He left her

at 0 for one month and then took it off. Doesn't Max start curving in his cast

after 30 days? Maybe if you could get your doctor to change it every 30 days

you could get better correction?

I hope I have answered all of your questions. Our next visit is April 24. I

will let you know if the staff situation has improved. Because her muscles are

weaker than most and her curve is flexible I have asked him to be prepared to

discuss what will happen if she curves again (does anyone know if Mehta has a

cut off age that she stops casting at?) and what he thinks about staples. I'll

let you know what he says.

________________________________

From: infantile_scoliosis on behalf of babymaxpd

Sent: Sat 4/14/2007 3:54 PM

To: infantile_scoliosis

Subject: Re: ???

I think was referring to Max. When we saw Dr. Thometz last

summer at 12 months of age, he said Max's curve was very rigid

(which Dr. Sturm-Shriner's Chicago has indicated and proved

otherwise).

Dr. Thometz did not want to recommend surgery at 12 months of age.

When I asked about casting he said " we can try, but I've never

really done it before. " We didn't want Max to be his experimental

case.

His comment really confuses me as 's child is casted by

him.

,

Dr. Thometz may be quiet and I agree not the best bedside manner,

but I really wasn't pleased with our experience all together with

Children's Milwaukee from support staff to providers. I do have to

say it was a hot summer friday afternoon; who knows it could have

been a rough week? His Physician Assitant was awesome. If it wasn't

for her I may have left there in tears.

Was Dr. Thometz trained by Dr. Mehta; or has he attended any of the

ETTP? I am just interested in knowing our resources, especially for

us here in the midwest as we have had a challengng time locating an

orthopedist who wanted and knew how to cast.

All in all, there are few doctors out there who are able to help our

children with casting and Bless each one of them.

Aekta

>

> We have been very happy with Dr. Thometz, although I know he would

not cast another member of this sites child....

>

> ***I am curious as to why Dr. Thometz will not cast a child in

need, from this group?

>

> HRH

> New Member

>

> Hello,

> I'm new to the group. I'm very glad I found you - there's not a

lot of

> info. on infantile scoliosis out there. My son, Noah, has been

> diagnosed with Infantile Scoliosis. He is 21 months old. We were

> referred by his pediatrican to Dr. Lonstein at TC Spine Center

in

> Mpls. I'm told he is a good doctor. We've had one appt. so far.

> Noah's curve is 30 degrees and his RVAD is 20. The doctor says

Noah

> is " right on the fence " as far as determining whether or not his

curve

> is likely to progress. We are to go back in 3 months to have a

new

> set of x-rays. If he is progressing - I will definately want to

> discuss casting as an option. A lot of what I'm reading has

indicated

> that Noah's numbers are not good, so I'm trying to prepare

myself for

> the worst without panicking. Any thoughts or advice is

appreciated.

> Thanks!

>

>

>

[Guest guest]

I was referring to Aekta and Max and remembered that you had a bad experience.

I am very curious about his comment on casting and wonder if it was because in

his opinion Max had a rigid curve. He is not Mehta trained, but Dr. Mehta did

see our daughter at the Philly ETTP and said that our daughter is not a typical

scoliosis kid. She thinks that her scoliosis is muscular based. We had muscle

biopsy tests done and she does not have any known disorder--which is good and

yet still very frustrating because it is clear that she does have some type of

neuro/muscular disorder--a rare un-named one according to our geneticist and

neurologist. With that said, we opted to stay with Dr. Thometz over switching

to Philly for casting for 2 reasons. 1. Convenience, or busy child does not

fly well nor ride well on long car trips and 2. Dr. Thometz gets the same

results (he got her to a zero in cast every time--the last time he even pushed

her 2 degrees the opposite way).

Dr. Thometz does not use the Mehta type of table. I honestly don't know what

kind of table (if any) he uses. I do know he pushes and holds her in place

while the team casts and wraps. I also know that our daughter is not the only

kid he's casted. When she was first diagnosed our pediatrician told us that she

had just sent another infant (8 months old) to him and that he casted her and

she was doing great. I never followed up on who that was because at that point

we were at the watch and wait at 19 degrees.

I agree with you on the not so good staff--I have often left there wanting to

cry--however I will say that was only recently--he's had staff turnover with

the exception of Annette--the beloved PA. Also it's only the scheduling front

desk people. When you do casting it is a different team which has always been

wonderful. I think once his clerical team gets the hang of how it works it

should improve. We've been there 3 years and it has only been bad since Nov.

All of that said I am happy with the work he does and willing to deal with the

other issues for him. Also we are now in a brace which Dr. Mehta said was a

good one--and it was made by the Children's brace person. Aekta I know you are

happy with your doc in Chicago, but one thing that Dr. Thometz does differently

than most--which might benefit Max and which your doc may be willing to do-- is

he changes the cast every 30 days. His philosophy is that you do your best to

correct, and then in 30 days push it to do better. Our first go around our

daughter was not so flexible and it took 3 casts to get her to 0. He left her

at 0 for one month and then took it off. Doesn't Max start curving in his cast

after 30 days? Maybe if you could get your doctor to change it every 30 days

you could get better correction?

I hope I have answered all of your questions. Our next visit is April 24. I

will let you know if the staff situation has improved. Because her muscles are

weaker than most and her curve is flexible I have asked him to be prepared to

discuss what will happen if she curves again (does anyone know if Mehta has a

cut off age that she stops casting at?) and what he thinks about staples. I'll

let you know what he says.

________________________________

From: infantile_scoliosis on behalf of babymaxpd

Sent: Sat 4/14/2007 3:54 PM

To: infantile_scoliosis

Subject: Re: ???

I think was referring to Max. When we saw Dr. Thometz last

summer at 12 months of age, he said Max's curve was very rigid

(which Dr. Sturm-Shriner's Chicago has indicated and proved

otherwise).

Dr. Thometz did not want to recommend surgery at 12 months of age.

When I asked about casting he said " we can try, but I've never

really done it before. " We didn't want Max to be his experimental

case.

His comment really confuses me as 's child is casted by

him.

,

Dr. Thometz may be quiet and I agree not the best bedside manner,

but I really wasn't pleased with our experience all together with

Children's Milwaukee from support staff to providers. I do have to

say it was a hot summer friday afternoon; who knows it could have

been a rough week? His Physician Assitant was awesome. If it wasn't

for her I may have left there in tears.

Was Dr. Thometz trained by Dr. Mehta; or has he attended any of the

ETTP? I am just interested in knowing our resources, especially for

us here in the midwest as we have had a challengng time locating an

orthopedist who wanted and knew how to cast.

All in all, there are few doctors out there who are able to help our

children with casting and Bless each one of them.

Aekta

>

> We have been very happy with Dr. Thometz, although I know he would

not cast another member of this sites child....

>

> ***I am curious as to why Dr. Thometz will not cast a child in

need, from this group?

>

> HRH

> New Member

>

> Hello,

> I'm new to the group. I'm very glad I found you - there's not a

lot of

> info. on infantile scoliosis out there. My son, Noah, has been

> diagnosed with Infantile Scoliosis. He is 21 months old. We were

> referred by his pediatrican to Dr. Lonstein at TC Spine Center

in

> Mpls. I'm told he is a good doctor. We've had one appt. so far.

> Noah's curve is 30 degrees and his RVAD is 20. The doctor says

Noah

> is " right on the fence " as far as determining whether or not his

curve

> is likely to progress. We are to go back in 3 months to have a

new

> set of x-rays. If he is progressing - I will definately want to

> discuss casting as an option. A lot of what I'm reading has

indicated

> that Noah's numbers are not good, so I'm trying to prepare

myself for

> the worst without panicking. Any thoughts or advice is

appreciated.

> Thanks!

>

>

>

[Guest guest]

We go to a totally diff set of doctors, however, our son Evan was seen and

examined by Dr. Mehta as well in Philly...

JMHO and I'm basing it on what Dr. Mehta said, " The longer you leave him in

the cast the better " . We had to have Evan's cast changed pretty often b/c he was

growing SO quickly that sometimes it would be every 6 weeks instead of 8. Miss

Mehta explained that the longer the baby can stay in the cast, then the more

correction that can be achieved. If your child is out more often, then I don't

see the benefit there. It seems to me that if the spine is being manipulated on

a table to achieve correction and then the POP jacket is applied to HOLD the

spine in place, then that is where the spine should stay and have time to let

the body grow to train the spine to grow straight in that particular position.

Evan is now in a brace and it worries me each day b/c his spine is able to be

manipulated and move and the brace is applied differently each day so his back

isn't getting the consistancy of a cast.

That's just my thinking, based on my conversation with Miss. Mehta.

I absolutely trust Miss Mehta w/everything I have in me.

Our son has been in a series of 7 casts and " graduated " to a brace at 8

degrees from a beginning COBB of 46/RVAD of 64. So I " m pretty pleased with the

work his docs have done and the way the casts have been applied.

Just my two cents.....

and Evan

" D. Esser " wrote:

I was referring to Aekta and Max and remembered that you had a bad

experience. I am very curious about his comment on casting and wonder if it was

because in his opinion Max had a rigid curve. He is not Mehta trained, but Dr.

Mehta did see our daughter at the Philly ETTP and said that our daughter is not

a typical scoliosis kid. She thinks that her scoliosis is muscular based. We had

muscle biopsy tests done and she does not have any known disorder--which is good

and yet still very frustrating because it is clear that she does have some type

of neuro/muscular disorder--a rare un-named one according to our geneticist and

neurologist. With that said, we opted to stay with Dr. Thometz over switching to

Philly for casting for 2 reasons. 1. Convenience, or busy child does not fly

well nor ride well on long car trips and 2. Dr. Thometz gets the same results

(he got her to a zero in cast every time--the last time he even pushed her 2

degrees the opposite way).

Dr. Thometz does not use the Mehta type of table. I honestly don't know what

kind of table (if any) he uses. I do know he pushes and holds her in place while

the team casts and wraps. I also know that our daughter is not the only kid he's

casted. When she was first diagnosed our pediatrician told us that she had just

sent another infant (8 months old) to him and that he casted her and she was

doing great. I never followed up on who that was because at that point we were

at the watch and wait at 19 degrees.

I agree with you on the not so good staff--I have often left there wanting to

cry--however I will say that was only recently--he's had staff turnover with the

exception of Annette--the beloved PA. Also it's only the scheduling front desk

people. When you do casting it is a different team which has always been

wonderful. I think once his clerical team gets the hang of how it works it

should improve. We've been there 3 years and it has only been bad since Nov.

All of that said I am happy with the work he does and willing to deal with the

other issues for him. Also we are now in a brace which Dr. Mehta said was a good

one--and it was made by the Children's brace person. Aekta I know you are happy

with your doc in Chicago, but one thing that Dr. Thometz does differently than

most--which might benefit Max and which your doc may be willing to do-- is he

changes the cast every 30 days. His philosophy is that you do your best to

correct, and then in 30 days push it to do better. Our first go around our

daughter was not so flexible and it took 3 casts to get her to 0. He left her at

0 for one month and then took it off. Doesn't Max start curving in his cast

after 30 days? Maybe if you could get your doctor to change it every 30 days you

could get better correction?

I hope I have answered all of your questions. Our next visit is April 24. I will

let you know if the staff situation has improved. Because her muscles are weaker

than most and her curve is flexible I have asked him to be prepared to discuss

what will happen if she curves again (does anyone know if Mehta has a cut off

age that she stops casting at?) and what he thinks about staples. I'll let you

know what he says.

________________________________

From: infantile_scoliosis on behalf of babymaxpd

Sent: Sat 4/14/2007 3:54 PM

To: infantile_scoliosis

Subject: Re: ???

I think was referring to Max. When we saw Dr. Thometz last

summer at 12 months of age, he said Max's curve was very rigid

(which Dr. Sturm-Shriner's Chicago has indicated and proved

otherwise).

Dr. Thometz did not want to recommend surgery at 12 months of age.

When I asked about casting he said " we can try, but I've never

really done it before. " We didn't want Max to be his experimental

case.

His comment really confuses me as 's child is casted by

him.

,

Dr. Thometz may be quiet and I agree not the best bedside manner,

but I really wasn't pleased with our experience all together with

Children's Milwaukee from support staff to providers. I do have to

say it was a hot summer friday afternoon; who knows it could have

been a rough week? His Physician Assitant was awesome. If it wasn't

for her I may have left there in tears.

Was Dr. Thometz trained by Dr. Mehta; or has he attended any of the

ETTP? I am just interested in knowing our resources, especially for

us here in the midwest as we have had a challengng time locating an

orthopedist who wanted and knew how to cast.

All in all, there are few doctors out there who are able to help our

children with casting and Bless each one of them.

Aekta

>

> We have been very happy with Dr. Thometz, although I know he would

not cast another member of this sites child....

>

> ***I am curious as to why Dr. Thometz will not cast a child in

need, from this group?

>

> HRH

> New Member

>

> Hello,

> I'm new to the group. I'm very glad I found you - there's not a

lot of

> info. on infantile scoliosis out there. My son, Noah, has been

> diagnosed with Infantile Scoliosis. He is 21 months old. We were

> referred by his pediatrican to Dr. Lonstein at TC Spine Center

in

> Mpls. I'm told he is a good doctor. We've had one appt. so far.

> Noah's curve is 30 degrees and his RVAD is 20. The doctor says

Noah

> is " right on the fence " as far as determining whether or not his

curve

> is likely to progress. We are to go back in 3 months to have a

new

> set of x-rays. If he is progressing - I will definately want to

> discuss casting as an option. A lot of what I'm reading has

indicated

> that Noah's numbers are not good, so I'm trying to prepare

myself for

> the worst without panicking. Any thoughts or advice is

appreciated.

> Thanks!

>

>

>

[Guest guest]

We go to a totally diff set of doctors, however, our son Evan was seen and

examined by Dr. Mehta as well in Philly...

JMHO and I'm basing it on what Dr. Mehta said, " The longer you leave him in

the cast the better " . We had to have Evan's cast changed pretty often b/c he was

growing SO quickly that sometimes it would be every 6 weeks instead of 8. Miss

Mehta explained that the longer the baby can stay in the cast, then the more

correction that can be achieved. If your child is out more often, then I don't

see the benefit there. It seems to me that if the spine is being manipulated on

a table to achieve correction and then the POP jacket is applied to HOLD the

spine in place, then that is where the spine should stay and have time to let

the body grow to train the spine to grow straight in that particular position.

Evan is now in a brace and it worries me each day b/c his spine is able to be

manipulated and move and the brace is applied differently each day so his back

isn't getting the consistancy of a cast.

That's just my thinking, based on my conversation with Miss. Mehta.

I absolutely trust Miss Mehta w/everything I have in me.

Our son has been in a series of 7 casts and " graduated " to a brace at 8

degrees from a beginning COBB of 46/RVAD of 64. So I " m pretty pleased with the

work his docs have done and the way the casts have been applied.

Just my two cents.....

and Evan

" D. Esser " wrote:

I was referring to Aekta and Max and remembered that you had a bad

experience. I am very curious about his comment on casting and wonder if it was

because in his opinion Max had a rigid curve. He is not Mehta trained, but Dr.

Mehta did see our daughter at the Philly ETTP and said that our daughter is not

a typical scoliosis kid. She thinks that her scoliosis is muscular based. We had

muscle biopsy tests done and she does not have any known disorder--which is good

and yet still very frustrating because it is clear that she does have some type

of neuro/muscular disorder--a rare un-named one according to our geneticist and

neurologist. With that said, we opted to stay with Dr. Thometz over switching to

Philly for casting for 2 reasons. 1. Convenience, or busy child does not fly

well nor ride well on long car trips and 2. Dr. Thometz gets the same results

(he got her to a zero in cast every time--the last time he even pushed her 2

degrees the opposite way).

Dr. Thometz does not use the Mehta type of table. I honestly don't know what

kind of table (if any) he uses. I do know he pushes and holds her in place while

the team casts and wraps. I also know that our daughter is not the only kid he's

casted. When she was first diagnosed our pediatrician told us that she had just

sent another infant (8 months old) to him and that he casted her and she was

doing great. I never followed up on who that was because at that point we were

at the watch and wait at 19 degrees.

I agree with you on the not so good staff--I have often left there wanting to

cry--however I will say that was only recently--he's had staff turnover with the

exception of Annette--the beloved PA. Also it's only the scheduling front desk

people. When you do casting it is a different team which has always been

wonderful. I think once his clerical team gets the hang of how it works it

should improve. We've been there 3 years and it has only been bad since Nov.

All of that said I am happy with the work he does and willing to deal with the

other issues for him. Also we are now in a brace which Dr. Mehta said was a good

one--and it was made by the Children's brace person. Aekta I know you are happy

with your doc in Chicago, but one thing that Dr. Thometz does differently than

most--which might benefit Max and which your doc may be willing to do-- is he

changes the cast every 30 days. His philosophy is that you do your best to

correct, and then in 30 days push it to do better. Our first go around our

daughter was not so flexible and it took 3 casts to get her to 0. He left her at

0 for one month and then took it off. Doesn't Max start curving in his cast

after 30 days? Maybe if you could get your doctor to change it every 30 days you

could get better correction?

I hope I have answered all of your questions. Our next visit is April 24. I will

let you know if the staff situation has improved. Because her muscles are weaker

than most and her curve is flexible I have asked him to be prepared to discuss

what will happen if she curves again (does anyone know if Mehta has a cut off

age that she stops casting at?) and what he thinks about staples. I'll let you

know what he says.

________________________________

From: infantile_scoliosis on behalf of babymaxpd

Sent: Sat 4/14/2007 3:54 PM

To: infantile_scoliosis

Subject: Re: ???

I think was referring to Max. When we saw Dr. Thometz last

summer at 12 months of age, he said Max's curve was very rigid

(which Dr. Sturm-Shriner's Chicago has indicated and proved

otherwise).

Dr. Thometz did not want to recommend surgery at 12 months of age.

When I asked about casting he said " we can try, but I've never

really done it before. " We didn't want Max to be his experimental

case.

His comment really confuses me as 's child is casted by

him.

,

Dr. Thometz may be quiet and I agree not the best bedside manner,

but I really wasn't pleased with our experience all together with

Children's Milwaukee from support staff to providers. I do have to

say it was a hot summer friday afternoon; who knows it could have

been a rough week? His Physician Assitant was awesome. If it wasn't

for her I may have left there in tears.

Was Dr. Thometz trained by Dr. Mehta; or has he attended any of the

ETTP? I am just interested in knowing our resources, especially for

us here in the midwest as we have had a challengng time locating an

orthopedist who wanted and knew how to cast.

All in all, there are few doctors out there who are able to help our

children with casting and Bless each one of them.

Aekta

>

> We have been very happy with Dr. Thometz, although I know he would

not cast another member of this sites child....

>

> ***I am curious as to why Dr. Thometz will not cast a child in

need, from this group?

>

> HRH

> New Member

>

> Hello,

> I'm new to the group. I'm very glad I found you - there's not a

lot of

> info. on infantile scoliosis out there. My son, Noah, has been

> diagnosed with Infantile Scoliosis. He is 21 months old. We were

> referred by his pediatrican to Dr. Lonstein at TC Spine Center

in

> Mpls. I'm told he is a good doctor. We've had one appt. so far.

> Noah's curve is 30 degrees and his RVAD is 20. The doctor says

Noah

> is " right on the fence " as far as determining whether or not his

curve

> is likely to progress. We are to go back in 3 months to have a

new

> set of x-rays. If he is progressing - I will definately want to

> discuss casting as an option. A lot of what I'm reading has

indicated

> that Noah's numbers are not good, so I'm trying to prepare

myself for

> the worst without panicking. Any thoughts or advice is

appreciated.

> Thanks!

>

>

>

[Guest guest]

Hi ,

Thank you very much for sharing this information. Dr. Thometz did

explain his casting method of pushing while the team casts. I did

appreciate his honesty when he said he really never casted before-

not sure what he meant now that I hear your story. Interestingly

enough, all 3 orthopedist, Marshfield, Madison, & Milwaukee said

Max's curve was rigid, except Shriners Chicago. I never doubted the

rigidity of the curve when we were in Milwaukee.

Dr. Sturm likes to cast every 8 weeks. We do lose the correction

within 30 days. The curve that keeps progressing is the lumbar

curve. I will have to ask if casting every month is an

option/beneficial. I remember Dr. Thometz mentioning if he did cast

Max he may have to use his shoulder or thigh as an anchor which

would also be casted.

That is great your daughter was evaluated by Dr. Mehta and was able

to provide feedback. I completely respect and admire your decesion

to stay with Dr. Thometz especially with the results you were

getting.

The best way to describe how I felt at the appointment was that we

were an inconvenience.We were desperate to get in with Dr. Thometz

with Max's curve doubling in 3 months in a brace and surgery being

scheduled just 3 weeks away. Again, personality does not equal

quality of care. Working in healthcare and doing my clinic rotation

at Children's Milwaukee, I know the quality of care Children's

Milwaukee provides is very good which why we wnated an opinion from

Dr. Thometz.

BTW - Max can be terror in the care wit our 5 1/2 hour drive to

Chicago every month, we have yet to take him on a plane.

It was great to hear from you.

Thank you,

Aekta

> >

> > We have been very happy with Dr. Thometz, although I know he

would

> not cast another member of this sites child....

> >

> > ***I am curious as to why Dr. Thometz will not cast a child in

> need, from this group?

> >

> > HRH

> > New Member

> >

> > Hello,

> > I'm new to the group. I'm very glad I found you - there's not a

> lot of

> > info. on infantile scoliosis out there. My son, Noah, has been

> > diagnosed with Infantile Scoliosis. He is 21 months old. We were

> > referred by his pediatrican to Dr. Lonstein at TC Spine Center

> in

> > Mpls. I'm told he is a good doctor. We've had one appt. so far.

> > Noah's curve is 30 degrees and his RVAD is 20. The doctor says

> Noah

> > is " right on the fence " as far as determining whether or not his

> curve

> > is likely to progress. We are to go back in 3 months to have a

> new

> > set of x-rays. If he is progressing - I will definately want to

> > discuss casting as an option. A lot of what I'm reading has

> indicated

> > that Noah's numbers are not good, so I'm trying to prepare

> myself for

> > the worst without panicking. Any thoughts or advice is

> appreciated.

> > Thanks!

> >

> >

> >

[Guest guest]

Hi ,

Thank you very much for sharing this information. Dr. Thometz did

explain his casting method of pushing while the team casts. I did

appreciate his honesty when he said he really never casted before-

not sure what he meant now that I hear your story. Interestingly

enough, all 3 orthopedist, Marshfield, Madison, & Milwaukee said

Max's curve was rigid, except Shriners Chicago. I never doubted the

rigidity of the curve when we were in Milwaukee.

Dr. Sturm likes to cast every 8 weeks. We do lose the correction

within 30 days. The curve that keeps progressing is the lumbar

curve. I will have to ask if casting every month is an

option/beneficial. I remember Dr. Thometz mentioning if he did cast

Max he may have to use his shoulder or thigh as an anchor which

would also be casted.

That is great your daughter was evaluated by Dr. Mehta and was able

to provide feedback. I completely respect and admire your decesion

to stay with Dr. Thometz especially with the results you were

getting.

The best way to describe how I felt at the appointment was that we

were an inconvenience.We were desperate to get in with Dr. Thometz

with Max's curve doubling in 3 months in a brace and surgery being

scheduled just 3 weeks away. Again, personality does not equal

quality of care. Working in healthcare and doing my clinic rotation

at Children's Milwaukee, I know the quality of care Children's

Milwaukee provides is very good which why we wnated an opinion from

Dr. Thometz.

BTW - Max can be terror in the care wit our 5 1/2 hour drive to

Chicago every month, we have yet to take him on a plane.

It was great to hear from you.

Thank you,

Aekta

> >

> > We have been very happy with Dr. Thometz, although I know he

would

> not cast another member of this sites child....

> >

> > ***I am curious as to why Dr. Thometz will not cast a child in

> need, from this group?

> >

> > HRH

> > New Member

> >

> > Hello,

> > I'm new to the group. I'm very glad I found you - there's not a

> lot of

> > info. on infantile scoliosis out there. My son, Noah, has been

> > diagnosed with Infantile Scoliosis. He is 21 months old. We were

> > referred by his pediatrican to Dr. Lonstein at TC Spine Center

> in

> > Mpls. I'm told he is a good doctor. We've had one appt. so far.

> > Noah's curve is 30 degrees and his RVAD is 20. The doctor says

> Noah

> > is " right on the fence " as far as determining whether or not his

> curve

> > is likely to progress. We are to go back in 3 months to have a

> new

> > set of x-rays. If he is progressing - I will definately want to

> > discuss casting as an option. A lot of what I'm reading has

> indicated

> > that Noah's numbers are not good, so I'm trying to prepare

> myself for

> > the worst without panicking. Any thoughts or advice is

> appreciated.

> > Thanks!

> >

> >

> >

[Guest guest]

,

I would assume it would be the method the cast is put on to be

assured there is no progression in the 12 week or so before changing

the cast. My question would be: what is to be done in cases like

Max's where in 30 days the curve has progressed back to pre-casting

measurements? Should he still be left in the same cast that isn't

holding the correction? Or should he be casted more frequently to

decrease the opprtunity of progression over time?

Anyone's feedback would be helpful.

Thank you,

Aekta

> >

> > We have been very happy with Dr. Thometz, although I know he

would

> not cast another member of this sites child....

> >

> > ***I am curious as to why Dr. Thometz will not cast a child in

> need, from this group?

> >

> > HRH

> > New Member

> >

> > Hello,

> > I'm new to the group. I'm very glad I found you - there's not a

> lot of

> > info. on infantile scoliosis out there. My son, Noah, has been

> > diagnosed with Infantile Scoliosis. He is 21 months old. We were

> > referred by his pediatrican to Dr. Lonstein at TC Spine Center

> in

> > Mpls. I'm told he is a good doctor. We've had one appt. so far.

> > Noah's curve is 30 degrees and his RVAD is 20. The doctor says

> Noah

> > is " right on the fence " as far as determining whether or not his

> curve

> > is likely to progress. We are to go back in 3 months to have a

> new

> > set of x-rays. If he is progressing - I will definately want to

> > discuss casting as an option. A lot of what I'm reading has

> indicated

> > that Noah's numbers are not good, so I'm trying to prepare

> myself for

> > the worst without panicking. Any thoughts or advice is

> appreciated.

> > Thanks!

> >

> >

> >

[Guest guest]

,

I would assume it would be the method the cast is put on to be

assured there is no progression in the 12 week or so before changing

the cast. My question would be: what is to be done in cases like

Max's where in 30 days the curve has progressed back to pre-casting

measurements? Should he still be left in the same cast that isn't

holding the correction? Or should he be casted more frequently to

decrease the opprtunity of progression over time?

Anyone's feedback would be helpful.

Thank you,

Aekta

> >

> > We have been very happy with Dr. Thometz, although I know he

would

> not cast another member of this sites child....

> >

> > ***I am curious as to why Dr. Thometz will not cast a child in

> need, from this group?

> >

> > HRH

> > New Member

> >

> > Hello,

> > I'm new to the group. I'm very glad I found you - there's not a

> lot of

> > info. on infantile scoliosis out there. My son, Noah, has been

> > diagnosed with Infantile Scoliosis. He is 21 months old. We were

> > referred by his pediatrican to Dr. Lonstein at TC Spine Center

> in

> > Mpls. I'm told he is a good doctor. We've had one appt. so far.

> > Noah's curve is 30 degrees and his RVAD is 20. The doctor says

> Noah

> > is " right on the fence " as far as determining whether or not his

> curve

> > is likely to progress. We are to go back in 3 months to have a

> new

> > set of x-rays. If he is progressing - I will definately want to

> > discuss casting as an option. A lot of what I'm reading has

> indicated

> > that Noah's numbers are not good, so I'm trying to prepare

> myself for

> > the worst without panicking. Any thoughts or advice is

> appreciated.

> > Thanks!

> >

> >

> >

[Guest guest]

Maybe it's the rotation? I am thinking if he's not being casted on a the proper

frame, then more than likely his rotation isn't being addressed. The curve will

always return until the rotation is corrected.....this is my understanding from

Ms. Mehta anyway.

babymaxpd wrote: ,

I would assume it would be the method the cast is put on to be

assured there is no progression in the 12 week or so before changing

the cast. My question would be: what is to be done in cases like

Max's where in 30 days the curve has progressed back to pre-casting

measurements? Should he still be left in the same cast that isn't

holding the correction? Or should he be casted more frequently to

decrease the opprtunity of progression over time?

Anyone's feedback would be helpful.

Thank you,

Aekta

> >

> > We have been very happy with Dr. Thometz, although I know he

would

> not cast another member of this sites child....

> >

> > ***I am curious as to why Dr. Thometz will not cast a child in

> need, from this group?

> >

> > HRH

> > New Member

> >

> > Hello,

> > I'm new to the group. I'm very glad I found you - there's not a

> lot of

> > info. on infantile scoliosis out there. My son, Noah, has been

> > diagnosed with Infantile Scoliosis. He is 21 months old. We were

> > referred by his pediatrican to Dr. Lonstein at TC Spine Center

> in

> > Mpls. I'm told he is a good doctor. We've had one appt. so far.

> > Noah's curve is 30 degrees and his RVAD is 20. The doctor says

> Noah

> > is " right on the fence " as far as determining whether or not his

> curve

> > is likely to progress. We are to go back in 3 months to have a

> new

> > set of x-rays. If he is progressing - I will definately want to

> > discuss casting as an option. A lot of what I'm reading has

> indicated

> > that Noah's numbers are not good, so I'm trying to prepare

> myself for

> > the worst without panicking. Any thoughts or advice is

> appreciated.

> > Thanks!

> >

> >

> >

[Guest guest]

Maybe it's the rotation? I am thinking if he's not being casted on a the proper

frame, then more than likely his rotation isn't being addressed. The curve will

always return until the rotation is corrected.....this is my understanding from

Ms. Mehta anyway.

babymaxpd wrote: ,

I would assume it would be the method the cast is put on to be

assured there is no progression in the 12 week or so before changing

the cast. My question would be: what is to be done in cases like

Max's where in 30 days the curve has progressed back to pre-casting

measurements? Should he still be left in the same cast that isn't

holding the correction? Or should he be casted more frequently to

decrease the opprtunity of progression over time?

Anyone's feedback would be helpful.

Thank you,

Aekta

> >

> > We have been very happy with Dr. Thometz, although I know he

would

> not cast another member of this sites child....

> >

> > ***I am curious as to why Dr. Thometz will not cast a child in

> need, from this group?

> >

> > HRH

> > New Member

> >

> > Hello,

> > I'm new to the group. I'm very glad I found you - there's not a

> lot of

> > info. on infantile scoliosis out there. My son, Noah, has been

> > diagnosed with Infantile Scoliosis. He is 21 months old. We were

> > referred by his pediatrican to Dr. Lonstein at TC Spine Center

> in

> > Mpls. I'm told he is a good doctor. We've had one appt. so far.

> > Noah's curve is 30 degrees and his RVAD is 20. The doctor says

> Noah

> > is " right on the fence " as far as determining whether or not his

> curve

> > is likely to progress. We are to go back in 3 months to have a

> new

> > set of x-rays. If he is progressing - I will definately want to

> > discuss casting as an option. A lot of what I'm reading has

> indicated

> > that Noah's numbers are not good, so I'm trying to prepare

> myself for

> > the worst without panicking. Any thoughts or advice is

> appreciated.

> > Thanks!

> >

> >

> >

[Guest guest]

I was thinking the same thing - that perhaps they don't have an AMIL frame

and/or they are not addressing his rotation.

Noelle (12-2-01)

Ian (8-15-04)

New Member

> >

> > Hello,

> > I'm new to the group. I'm very glad I found you - there's not a

> lot of

> > info. on infantile scoliosis out there. My son, Noah, has been

> > diagnosed with Infantile Scoliosis. He is 21 months old. We were

> > referred by his pediatrican to Dr. Lonstein at TC Spine Center

> in

> > Mpls. I'm told he is a good doctor. We've had one appt. so far.

> > Noah's curve is 30 degrees and his RVAD is 20. The doctor says

> Noah

> > is " right on the fence " as far as determining whether or not his

> curve

> > is likely to progress. We are to go back in 3 months to have a

> new

> > set of x-rays. If he is progressing - I will definately want to

> > discuss casting as an option. A lot of what I'm reading has

> indicated

> > that Noah's numbers are not good, so I'm trying to prepare

> myself for

> > the worst without panicking. Any thoughts or advice is

> appreciated.

> > Thanks!

> >

> >

> >

[Guest guest]

I was thinking the same thing - that perhaps they don't have an AMIL frame

and/or they are not addressing his rotation.

Noelle (12-2-01)

Ian (8-15-04)

New Member

> >

> > Hello,

> > I'm new to the group. I'm very glad I found you - there's not a

> lot of

> > info. on infantile scoliosis out there. My son, Noah, has been

> > diagnosed with Infantile Scoliosis. He is 21 months old. We were

> > referred by his pediatrican to Dr. Lonstein at TC Spine Center

> in

> > Mpls. I'm told he is a good doctor. We've had one appt. so far.

> > Noah's curve is 30 degrees and his RVAD is 20. The doctor says

> Noah

> > is " right on the fence " as far as determining whether or not his

> curve

> > is likely to progress. We are to go back in 3 months to have a

> new

> > set of x-rays. If he is progressing - I will definately want to

> > discuss casting as an option. A lot of what I'm reading has

> indicated

> > that Noah's numbers are not good, so I'm trying to prepare

> myself for

> > the worst without panicking. Any thoughts or advice is

> appreciated.

> > Thanks!

> >

> >

> >