Re: back from Rochester- no change again

[Guest guest]

Hi Jill,

I just wanted to say that I agree with you that seeing a genetisist

seems like a bit of overkill to me. I mean, just because the number

has been stuck at 16? I've heard of other kids, my son included, who

stayed at a particular number for a while (while braced or casted).

I don't think it's that unusual. Maybe your son hasn't had a big

growth spurt during this time?

By the way, my son did see a genetisist. He was diagnosed before age

2 with a significant curve - and at that time (several years ago) I

followed by orthos suggestion to see a genetisist. They turned up

nothing. I think your doctor is probably just frustrated and/or

grasping at straws.

Just my two cents.

By the way, several of these kids I mentioned above - after being

stuck at a particular number for a while - DID then see some further

improvement. Of coures, there are no guarantees, but I surely

wouldn't give up hope of that happening. And even if, worst case

scenario, the number stays around 16 - say, with bracing in the

future - that's not so bad. I recall our doctor once telling me that

he likes to see curves at least get under 20 degrees because,

according to him, they have a lesser chance of progressing later on

than those above 20 degrees.

Most importantly, you say your son's back looks great and he's

otherwise healthy!! And those truly are the most important things.

Hope this helps.

>

> Hi everyone. Well I am not sure where to start. We are back from

our latest cast change. had his last cast on for just over 3

months. We had been stuck at 16 degrees for the past 3 cast, now

make it four. The xrays (supine) looked so good to me. I was sure

we were close to 10 degrees. I could barely contain myself, then the

doctor pulled up the xray on his computer and started measuring it

with a new program (as opposed to with protractor, ruler and pencil

as he usually does.) Guess the number that came up...16. He said by

tweaking and moving the lines a bit he got anywhere from 11 or 12 to

18 or 19. Our doctor knows our frustration and can't explain why we

are not getting more of a change. In the past he has said, " I think

we can fix this, especially because it is clear has no other

underlying syndromes... " Well this time it was almost as if he was

trying to help explain the lack of progress he threw out there maybe

we should

> see a geneticist. I may be in denial, but I feel that is

unnecessary. I do not want my baby to be poked or prodded any more

than needed.

> His back to the naked eye is beautiful. When asked to bend over it

looks so straight!

> We are going to try another cast until March (when turns 3).

We may even do one more after that and then go for a brace for the

summer. What do you all think of this? I have cried until I am out

of tears due to frustration and exhaustion. I know is healthy

and happy and that the casts have made a difference in his life. The

doctor almost sounded as if he is giving up on curing .

> What do you all think of all of this? Thank you for all the

support.

> Jill and

>

[Guest guest]

I say hang in there until summer. Better safe than sorry.

You could still get some correction and if you don’t then you at least

know that you tried.

From:

infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of jill wienke

Sent: Wednesday, December 03, 2008 8:05 AM

To: infantile_scoliosis

Subject: back from Rochester- no change again

Hi everyone. Well I am not sure where to start.

We are back from our latest cast change. had his last cast on for just

over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it

four. The xrays (supine) looked so good to me. I was sure we were close to 10

degrees. I could barely contain myself, then the doctor pulled up the xray on

his computer and started measuring it with a new program (as opposed to with

protractor, ruler and pencil as he usually does.) Guess the number that came

up...16. He said by tweaking and moving the lines a bit he got anywhere from 11

or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we

are not getting more of a change. In the past he has said, " I think we can

fix this, especially because it is clear has no other underlying

syndromes... " Well this time it was almost as if he was trying to help

explain the lack of progress he threw out there maybe we s hould

see a geneticist. I may be in denial, but I feel that is unnecessary. I do not

want my baby to be poked or prodded any more than needed.

His back to the naked eye is beautiful. When asked to bend over it looks so

straight!

We are going to try another cast until March (when turns 3). We may even

do one more after that and then go for a brace for the summer. What do you all

think of this? I have cried until I am out of tears due to frustration and

exhaustion. I know is healthy and happy and that the casts have made a

difference in his life. The doctor almost sounded as if he is giving up on

curing .

What do you all think of all of this? Thank you for all the support.

Jill and

[Guest guest]

Thanks . I agree. He tolerates the cast well. We have waterproof so soiling it isn't an issue. I definitely can handle two more casts. Its the cast changes and out of cast xrays that fry my nerves! Ugh. Thanks for the response. I love this group.

Jill

Subject: RE: back from Rochester- no change againTo: "infantile_scoliosis " <infantile_scoliosis >Date: Wednesday, December 3, 2008, 10:04 AM

I say hang in there until summer. Better safe than sorry. You could still get some correction and if you don¢t then you at least know that you tried.

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of jill wienkeSent: Wednesday, December 03, 2008 8:05 AMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes..." Well this time it was almost as if he was trying to help explain the lack of progress he threw out there maybe we s houldsee a

geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and

[Guest guest]

Jill,

I'm so sorry, I can't imagine the frustration you're feeling right

now. But, as others have mentioned, the important thing is that your

sweet boy is otherwise healthy and looking good! I don't blame you

one bit for wanting to wait to see a geneticist, it is so hard to see

your baby poked for what seems like no reason. It sounds like you

have a good plan in place for the next few months...just keep taking

it one day at a time! I'm new here to this group, but I can't tell

you how much the support has meant to me so far!

Hugs,

>

> Hi everyone. Well I am not sure where to start. We are back from

our latest cast change. had his last cast on for just over 3

months. We had been stuck at 16 degrees for the past 3 cast, now make

it four. The xrays (supine) looked so good to me. I was sure we were

close to 10 degrees. I could barely contain myself, then the doctor

pulled up the xray on his computer and started measuring it with a new

program (as opposed to with protractor, ruler and pencil as he

usually does.) Guess the number that came up...16. He said by

tweaking and moving the lines a bit he got anywhere from 11 or 12 to

18 or 19. Our doctor knows our frustration and can't explain why we

are not getting more of a change. In the past he has said, " I think

we can fix this, especially because it is clear has no other

underlying syndromes... " Well this time it was almost as if he was

trying to help explain the lack of progress he threw out there maybe

we should

> see a geneticist. I may be in denial, but I feel that is

unnecessary. I do not want my baby to be poked or prodded any more

than needed.

> His back to the naked eye is beautiful. When asked to bend over it

looks so straight!

> We are going to try another cast until March (when turns 3).

We may even do one more after that and then go for a brace for the

summer. What do you all think of this? I have cried until I am out

of tears due to frustration and exhaustion. I know is healthy

and happy and that the casts have made a difference in his life. The

doctor almost sounded as if he is giving up on curing .

> What do you all think of all of this? Thank you for all the support.

> Jill and

>

[Guest guest]

Hi Jill,When I read your post I thought to myself, 'it is sorta our situation, but she is one cast ahead of us". Keira is in cast #3 and will be 3 in April. I understand your frustration. Keira actually got worse in cast #2 and we only saw 5* correction in cast #3. But one thing the doctor did say is that 'clinically' she looks good and that is what you said when you looked at 's back. We also are on the "one more cast and then a brace for the summer plan." Our doctor said he couldn't justify putting her in a cast for another summer when we aren't seeing much correction. He said after the summer we may try one more cast. Just remember that measurements can be up to 5* off and perhaps now that he is using a different tool to measure you are getting a slightly different number. Can he use this program to look at the previous xrays to see if

the numbers stay the same?You said this is a 'waterproof' cast, could that be contributing somehow to the lack of correction?I agree that subjecting your child to a geneticist is unneccesary. Hang in there, perhaps this cast will be the ticket and will have a growth spurt! LizSubject: back from Rochester- no change againTo: infantile_scoliosis Date: Wednesday, December 3, 2008, 6:04 AM

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to help explain the lack of progress he threw out there

maybe we should

see a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed.

His back to the naked eye is beautiful. When asked to bend over it looks so straight!

We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing .

What do you all think of all of this? Thank you for all the support.

Jill and

[Guest guest]

I think the #’s are great.

Especially, when you compare them to when started. Many children who

transfer from cast to removable brace (under 20 degrees with no rotation) experience

even more correction. Muscles are being used that hadn’t been used

before, and brace time can help to strengthen up the core and hold/correct the

young spine even more. Ask about plaster –vs- fiberglass

(waterproof) for ’s situation and if the doc thinks perhaps a final plaster

jacket would benefit in getting him even lower. Plaster is a more

mouldable material and maybe that’s whats needed for the final jacket

application? I am no doc, but it wouldn’t hurt to ask.

HRH

From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of jill wienke

Sent: Wednesday, December 03, 2008

7:05 AM

To: infantile_scoliosis

Subject:

back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are

back from our latest cast change. had his last cast on for just over 3

months. We had been stuck at 16 degrees for the past 3 cast, now make it four.

The xrays (supine) looked so good to me. I was sure we were close to 10

degrees. I could barely contain myself, then the doctor pulled up the xray on

his computer and started measuring it with a new program (as opposed to with

protractor, ruler and pencil as he usually does.) Guess the number that came

up...16. He said by tweaking and moving the lines a bit he got anywhere from 11

or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we

are not getting more of a change. In the past he has said, " I think we can

fix this, especially because it is clear has no other underlying

syndromes... " Well this time it was almost as if he was trying to

help explain the lack of progress he threw out there maybe we should

see a geneticist. I may be in denial, but I feel that is unnecessary. I do not

want my baby to be poked or prodded any more than needed.

His back to the naked eye is beautiful. When asked to bend over it looks so

straight!

We are going to try another cast until March (when turns 3). We may even

do one more after that and then go for a brace for the summer. What do you all

think of this? I have cried until I am out of tears due to frustration and

exhaustion. I know is healthy and happy and that the casts have made a

difference in his life. The doctor almost sounded as if he is giving up on

curing .

What do you all think of all of this? Thank you for all the support.

Jill and

[Guest guest]

Hi Jill,

When you said you could not sleep, now I know we think alike - LOL!

I guess it's part of parenthood - but I suspect that after a few

days, the more you think about things the better you will feel.

Remember, just because someone says " you might want to see a

genetisist " does NOT mean that there is ANYTHING wrong (my son is

proof of that!)

In the meantime, enjoy the fact that your son's curve is stable and

his back looks so good!

Best regards,

> >

> > Hi everyone. Well I am not sure where to start. We are back from

> our latest cast change. had his last cast on for just over 3

> months. We had been stuck at 16 degrees for the past 3 cast, now

> make it four. The xrays (supine) looked so good to me. I was sure

> we were close to 10 degrees. I could barely contain myself, then

the

> doctor pulled up the xray on his computer and started measuring it

> with a new program (as opposed to with protractor, ruler and pencil

> as he usually does.) Guess the number that came up...16. He said by

> tweaking and moving the lines a bit he got anywhere from 11 or 12

to

> 18 or 19. Our doctor knows our frustration and can't explain why we

> are not getting more of a change. In the past he has said, " I think

> we can fix this, especially because it is clear has no other

> underlying syndromes... " Well this time it was almost as if he was

> trying to help explain the lack of progress he threw out there

maybe

> we should

> > see a geneticist. I may be in denial, but I feel that is

> unnecessary. I do not want my baby to be poked or prodded any more

> than needed.

> > His back to the naked eye is beautiful. When asked to bend over

it

> looks so straight!

> > We are going to try another cast until March (when turns 3).

> We may even do one more after that and then go for a brace for the

> summer. What do you all think of this? I have cried until I am out

> of tears due to frustration and exhaustion. I know is healthy

> and happy and that the casts have made a difference in his life.

The

> doctor almost sounded as if he is giving up on curing .

> > What do you all think of all of this? Thank you for all the

> support.

> > Jill and

> >

>

[Guest guest]

Thank you . The supine xray looks so good. I wish the standing was just like the supine, but I do think more core strength would help that. Any thoughts on that? The information on the bracing was a God send. I have hope we may get more correction in a brace, when that time comes.

I have been beating myself up over the fiberglass. I have asked the doctor who said he wouldn't use the fiberglass on a high curve (moulding better with plaster) but that he was confident he could get close to zero in this cast. Does the fiberglass hold as well? I think the last few casts have been loose, but who am I to question... I over think everything on this subject!

I will certainly ask about plaster next time, especially if we stay stuck at 16 supine.

Thanks for all your insights!

Jill

Subject: RE: back from Rochester- no change againTo: infantile_scoliosis Date: Wednesday, December 3, 2008, 11:49 AM

I think the #’s are great. Especially, when you compare them to when started. Many children who transfer from cast to removable brace (under 20 degrees with no rotation) experience even more correction. Muscles are being used that hadn’t been used before, and brace time can help to strengthen up the core and hold/correct the young spine even more. Ask about plaster –vs- fiberglass (waterproof) for ’s situation and if the doc thinks perhaps a final plaster jacket would benefit in getting him even lower. Plaster is a more mouldable material and maybe that’s whats needed for the final jacket application? I am no doc, but it wouldn’t hurt to ask.

HRH

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of jill wienkeSent: Wednesday, December 03, 2008 7:05 AMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to help explain

the lack of progress he threw out there maybe we shouldsee a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and

[Guest guest]

Thanks Liz for your reply. I have questioned the waterproof cast and I am thinking that if we are still stuck at 16 after this cast then we will get the plaster again in March. I do know of a mom on this site who goes to the same doctor and she just got amazing correction in her son's last waterproof cast. Believe me I question EVERYTHING! I start to ask if the cast is not tight enough and stuff like that which is totally out of my control. This is enough drive a person totally crazy!

I sincerely hope that Keira and get some well deserved correction from their current casts. I now go back to waiting patiently... something I have never been very good at!

Hugs to you and thanks for your post!

Jill

From: jill wienke <jillwienkeyahoo (DOT) com>Subject: [infantile_scoliosi s] back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 6:04 AM

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to help explain the lack of progress he threw out there maybe we shouldsee a

geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and

[Guest guest]

Hi Jill,

Glad you're feeling better about things already!

The thing about the genetisist and why, if it were me, I would not

pursue it at this point is the reason (or LACK thereof) that your

doctor gave you - just because the number is " stuck " - that happens

all the time as Tina just pointed out. If he had a bunch of good

reasons, then maybe I'd consider it. But to put your child through

that JUST because there has been " no change " doesn't make any sense

to me.

Let me put it another way - if every child who was " stuck " at a

number (either in a cast or a brace) went to see a genetisist, that

would be an AWFUL lot of kids :-)

Sleep well tonight, Jill.

Best regards,

> > >

> > > Hi everyone. Well I am not sure where to start. We are back

from

> > our latest cast change. had his last cast on for just over 3

> > months. We had been stuck at 16 degrees for the past 3 cast, now

> > make it four. The xrays (supine) looked so good to me. I was sure

> > we were close to 10 degrees. I could barely contain myself, then

> the

> > doctor pulled up the xray on his computer and started measuring

it

> > with a new program (as opposed to with protractor, ruler and

pencil

> > as he usually does.) Guess the number that came up...16. He said

by

> > tweaking and moving the lines a bit he got anywhere from 11 or 12

> to

> > 18 or 19. Our doctor knows our frustration and can't explain why

we

> > are not getting more of a change. In the past he has said, " I

think

> > we can fix this, especially because it is clear has no other

> > underlying syndromes... " Well this time it was almost as if he

was

> > trying to help explain the lack of progress he threw out there

> maybe

> > we should

> > > see a geneticist. I may be in denial, but I feel that is

> > unnecessary. I do not want my baby to be poked or prodded any

more

> > than needed.

> > > His back to the naked eye is beautiful. When asked to bend over

> it

> > looks so straight!

> > > We are going to try another cast until March (when turns

3).

> > We may even do one more after that and then go for a brace for

the

> > summer. What do you all think of this? I have cried until I am

out

> > of tears due to frustration and exhaustion. I know is

healthy

> > and happy and that the casts have made a difference in his life.

> The

> > doctor almost sounded as if he is giving up on curing .

> > > What do you all think of all of this? Thank you for all the

> > support.

> > > Jill and

> > >

> >

>

[Guest guest]

Hi Jill,

Just jumping in again, but I agree with that about trying plaster again.... Our doc told me he can get better more accurate molding with the plaster because it is more maleable that the waterproof.... For the winter months, it couldn't hurt..... When do you go back? Steph

Subject: RE: back from Rochester- no change againTo: infantile_scoliosis Date: Wednesday, December 3, 2008, 4:49 PM

I think the #’s are great. Especially, when you compare them to when started. Many children who transfer from cast to removable brace (under 20 degrees with no rotation) experience even more correction. Muscles are being used that hadn’t been used before, and brace time can help to strengthen up the core and hold/correct the young spine even more. Ask about plaster –vs- fiberglass (waterproof) for ’s situation and if the doc thinks perhaps a final plaster jacket would benefit in getting him even lower. Plaster is a more mouldable material and maybe that’s whats needed for the final jacket application? I am no doc, but it wouldn’t hurt to ask.

HRH

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of jill wienkeSent: Wednesday, December 03, 2008 7:05 AMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] back from Rochester- no change again

Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to help explain

the lack of progress he threw out there maybe we shouldsee a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. His back to the naked eye is beautiful. When asked to bend over it looks so straight!We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . What do you all think of all of this? Thank you for all the support. Jill and