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Hi ,

I think you need to wait. We homeschool; but, I remember the

difficulties we had with our son's school and their indifference to his

condition like it was yesterday. You need all the documentation you

can get and, then, it still might not be enough.

Take care and keep us posted.

Louis

ocdnet@...

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Guest guest

,

Sounds like your school is failing you and your son

as they did mine and countless others. We had a

couple of teachers that just didn't get it.

After I met with the school principal and 504 coordinator,

they panicked because they were afraid that we would

file a lawsuit. By the time they were willing to make an

effort, it was too late for my son. His OCD anxieties had

reached the limit. So I informed them that my son would

not be able to return to school for a while, got two psychiatric

evaluations for them and filled out paperwork for homebound

instruction. We have a teacher that comes twice a week

for 2 1/2 hours. I work with my son the rest of the week.

is now making wonderful grades. I am strongly considering

homeschooling. I am learning a lot from Louis's other list, ocdand

homeschoolingonelist.

The teachers that are not present for your 504 meeting are

responsible for implementing the 504 plan. They have to by

law.

Take care and keep us posted.

wrote:

> From: <mikeinglen@...>

>

> I would like some input from you regarding what you would do in this

> situation.

>

> Our son continues to fail in school. He has OCD ADD and Tourettes and is

> medicated. The school has him on a 504 plan that is not working and in some

> cases they have not followed the plan. They continue to try to discount

> his condition, being uninformed about OCD I suspect. Since he is medicated

> many of his symptoms are reduced and instead his condition instead

> manifests itself in his school work.

>

> We have called a 504 meeting and his Doctor is preparing a detailed

> description of his disorder and its relationship to his learning disabilities.

>

> Since we are late in the school year, time is short. We have a meeting set

> for the end of this week, but the Dr. has asked that we postpone it if he

> cannot get all of the information together as complete as he wants to

> present it. The school is saying if we don't go now, it could be a couple

> weeks before we go again and perhaps after Easter break.

>

> On one hand, to wait would provide us with defined medical information, and

> thus counter the schools line that he is just a " spoiled child " and that he

> really has no serious problems that they can " see " . This despite the fact

> that he is on a 504 which addresses some of his learning problems.

>

> To keep the appointment with no letter gives us a little less muscle that

> we would have from an undisputable written medical definition. It would

> help get things going a bit faster though.

>

> If you were in this spot, what would you feel was the better avenue to

> take? Wait and have definitive medical information, or go to the meeting,

> and try the best we can?

>

> We were also informed that if we do the meeting now, one of his teachers

> will not be able to make it. Would any 504 layed down at the meeting apply

> to her regardless of her presence?

>

>

>

> ------------------------------------------------------------------------

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>

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Guest guest

At 10:41 AM 3/15/99 PST, you wrote:

>From: " W. Birk " <wb4@...>

>

>,

>

>Have you looked at the Fairlight Consulting web site??

>

> www.fairlite.com

>

>It has a article to print out for educators which is very good.

>

> http://www.fairlite.com/ocd/articles/school.shtml

>

>Suggest that they keep " Teaching the Tiger " as a reference as well. It

>would fit very well in your situation.

>

>

>good luck, wendy

Thank You . Yes I was aware of this. Thank you for recalling it to

my attention though. I am going back there momentarily.

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Guest guest

The article you mention is full of good information; however, it is rife

with typographical errors, a flaw that is very distracting to educators.

Most importantly, the statistic cited in the article, " ...Jess is one of

an estimated 200 school-age children in the United States suffering from

obsessive-compulsive disorder... " is wrong. While some may consider

these errors inconsequential, I feel they bring into question

(especially in the minds of teachers) the credibility of the

information.

I contacted OCF and was told that Jim Broatch was no longer with the

organization. I did copy the article and correct the errors so that I

could provide a copy to my daughter's guidance counselor and

vice-principal; however, I wasn't sure what the correct number was for

the estimated number of school-age children in the U.S. suffering from

OCD so I took the liberty of changing 200 to 200,000 (the number could

be 2 million, but I decided to err on the side of caution). If you'd

like a copy of the corrected article e-mailed to you (it's in

WordPerfect) please let me know and I'll be happy to provide it, but I'm

still waiting to hear from OCF to get the correct statistical

information.

Faith Chmiel

What would you do...

From: " W. Birk " <wb4@...>

,

Have you looked at the Fairlight Consulting web site??

www.fairlite.com

It has a article to print out for educators which is very good.

http://www.fairlite.com/ocd/articles/school.shtml

Suggest that they keep " Teaching the Tiger " as a reference as well. It

would fit very well in your situation.

good luck, wendy

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Guest guest

At 08:34 AM 3/15/99 -0500, you wrote:

>From: ocdnet@... (Louis Harkins)

>

>Hi ,

>

>I think you need to wait. We homeschool; but, I remember the

>difficulties we had with our son's school and their indifference to his

>condition like it was yesterday. You need all the documentation you

>can get and, then, it still might not be enough.

>

>Take care and keep us posted.

That's the feedback I am getting. Our worry was the added delay, but then

like someone said, the delay might be greater without the information, and

thus generate a need for further debate and meetings once we do have all

the info.

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Guest guest

Dear : The 504 plan applies to all teachers regardless if they are

present or not. You could go to the meeting but ask for a follow up after

Easter as well. I was not prepared at our first meeting and it did not go as

well as I had hoped. One week later I came equipped with info but the meeting

was only ourselves, the special ed. coordinator and my child. The teachers

were not there. However I had with me copies of an article and made sure each

teacher got a copy. Since then, they are all trying to make an effort. We

also scheduled another follow up meeting for several weeks later where all

teachers must attend. I hope this helped you. If you feel you will meet with

alot of resistance, postpone the meeting until you are prepared. If you can

go and also ask for a follow up meeting then do that. I feel your pain and

wish you alot of luck. Sheree

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Guest guest

Hi Faith and all, some uncredited material from my daughter's therapist says

one *in* 200 school-age children has OCD--I wonder if that is the statistic

you want. I'm sorry I can't provide a reference.

Kathy R.

What would you do...

>

>

>From: " W. Birk " <wb4@...>

>

>,

>

>Have you looked at the Fairlight Consulting web site??

>

> www.fairlite.com

>

>It has a article to print out for educators which is very good.

>

> http://www.fairlite.com/ocd/articles/school.shtml

>

>Suggest that they keep " Teaching the Tiger " as a reference as well. It

>would fit very well in your situation.

>

>

>good luck, wendy

>Get Your Private, Free Email at http://www.hotmail.com

>

>------------------------------------------------------------------------

>If you like orange and blue, then you will love our new web site!

>

>Onelist: ing connections and information exchange

>------------------------------------------------------------------------

>The is sponsored by the OCSDA. You may visit

>their web site at http://www.ocdhelp.org/ and view schedules for

>chatroom support at http://www.ocdhelp.org/chat.html

>

>------------------------------------------------------------------------

>Ideas on how we can improve ONElist?

>

>Check out the Suggestion Box feature on our new web site

>------------------------------------------------------------------------

>The is sponsored by the OCSDA. You may visit their

web site at http://www.ocdhelp.org/ and view schedules for chatroom support

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Guest guest

Faith,

I would appreciate a copy. Thanks!

maryth3@...

Faith Chmiel wrote:

> From: Faith Chmiel <fchmiel@...>

>

> The article you mention is full of good information; however, it is rife

> with typographical errors, a flaw that is very distracting to educators.

> Most importantly, the statistic cited in the article, " ...Jess is one of

> an estimated 200 school-age children in the United States suffering from

> obsessive-compulsive disorder... " is wrong. While some may consider

> these errors inconsequential, I feel they bring into question

> (especially in the minds of teachers) the credibility of the

> information.

>

> I contacted OCF and was told that Jim Broatch was no longer with the

> organization. I did copy the article and correct the errors so that I

> could provide a copy to my daughter's guidance counselor and

> vice-principal; however, I wasn't sure what the correct number was for

> the estimated number of school-age children in the U.S. suffering from

> OCD so I took the liberty of changing 200 to 200,000 (the number could

> be 2 million, but I decided to err on the side of caution). If you'd

> like a copy of the corrected article e-mailed to you (it's in

> WordPerfect) please let me know and I'll be happy to provide it, but I'm

> still waiting to hear from OCF to get the correct statistical

> information.

>

> Faith Chmiel

>

> What would you do...

>

> From: " W. Birk " <wb4@...>

>

> ,

>

> Have you looked at the Fairlight Consulting web site??

>

> www.fairlite.com

>

> It has a article to print out for educators which is very good.

>

> http://www.fairlite.com/ocd/articles/school.shtml

>

> Suggest that they keep " Teaching the Tiger " as a reference as well. It

> would fit very well in your situation.

>

> good luck, wendy

> Get Your Private, Free Email at http://www.hotmail.com

>

> ------------------------------------------------------------------------

> If you like orange and blue, then you will love our new web site!

>

> Onelist: ing connections and information exchange

> ------------------------------------------------------------------------

> The is sponsored by the OCSDA. You may visit

> their web site at http://www.ocdhelp.org/ and view schedules for

> chatroom support at http://www.ocdhelp.org/chat.html

>

> ------------------------------------------------------------------------

> Ideas on how we can improve ONElist?

>

> Check out the Suggestion Box feature on our new web site

> ------------------------------------------------------------------------

> The is sponsored by the OCSDA. You may visit their

web site at http://www.ocdhelp.org/ and view schedules for chatroom support at

http://www.ocdhelp.org/chat.html

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Guest guest

Hi :

Some of the problems you describe are very familiar to us. Teachers are

legally obligated to follow the 504 plan, when they have not done this they

place the school in a very vulnerable situation. Once they realize you

know this, you might find them more responsive to what you want.

You do not say what accommodations you have been asking for your son. We

found the same as you, although teachers are well-meaning, they mostly

" don't get it " when it comes to OCD and several other NBDs. Out of about a

dozen or more teachers we have discussed my son with, only one really gets

it. And at least one of the others looked things up on the Internet and is

a very sharp person. The VP told me he didn't know what we wanted as my

son was not a " problem " because he was not referred to his office!

Discounting their OCD, being uninformed is par for the course. Does your

school system have any parent advocates? This might be the way to go when

meeting with the school. We have tried to educate about OCD but really it

doesn't work. What did work a bit was having his doc and/or therapist come

and talk to them. They don't have to say much, you can probably explain

what OCD is before the professional gets there, just having a mental health

professional there makes the school realize this is a serious situation.

Also what helped was that for two months our son was too sick to go to

school. Since he was the school president they really noticed and knew we

would not keep him out of school without an excellent reason. Our son's

first psychiatrist wrote the principal a one-page letter telling her he

needed special services under 504 and that got their attention.

What we have found is that we have to figure out the accommodations our son

needs ourselves and then encourage the teachers to follow through. Then we

have to track to see if they are following through and if they are not we

have to call another 504 meeting. This is exhausting, but that is how the

system works. I am not sure how things work in your state, but here there

are timelines for meetings and responses and you have to be given

information about your rights. If an important teacher cannot make it to

the meeting, I suggest you ask for a separate meeting with him/her asap.

Since our hopes for our son include learning and living in society, we have

decided to keep him in the public school system. That means we have to

keep cordial and realistic relations with the school no matter how messed

up we might think their treatment of 504 kids is. Teachers are busy with

many problems, only one of which is our child. It is important for them to

see us as loving, concerned and involved parents so they realize our kids

are not " spoiled " but are suffering and needing help as much as any child

who is openly acting out. When they understand a bit about anxiety, then

they will understand these accommodations are not spoiling our kids, nor

undermining their discipline plans, but are only providing human kindness,

mercy and understanding where it is sorely needed.

Good luck , sorry for the too long post, aloha, Kathy

kathyh@...

wrote:

>I would like some input from you regarding what you would do in this

>situation.

>

>Our son continues to fail in school. He has OCD ADD and Tourettes and is

>medicated. The school has him on a 504 plan that is not working and in some

>cases they have not followed the plan. They continue to try to discount

>his condition, being uninformed about OCD I suspect. Since he is medicated

>many of his symptoms are reduced and instead his condition instead

>manifests itself in his school work.

>

>We have called a 504 meeting and his Doctor is preparing a detailed

>description of his disorder and its relationship to his learning

disabilities.

>

>Since we are late in the school year, time is short. We have a meeting set

>for the end of this week, but the Dr. has asked that we postpone it if he

>cannot get all of the information together as complete as he wants to

>present it. The school is saying if we don't go now, it could be a couple

>weeks before we go again and perhaps after Easter break.

>

>On one hand, to wait would provide us with defined medical information, and

>thus counter the schools line that he is just a " spoiled child " and that he

>really has no serious problems that they can " see " . This despite the fact

>that he is on a 504 which addresses some of his learning problems.

>

>To keep the appointment with no letter gives us a little less muscle that

>we would have from an undisputable written medical definition. It would

>help get things going a bit faster though.

>

>If you were in this spot, what would you feel was the better avenue to

>take? Wait and have definitive medical information, or go to the meeting,

>and try the best we can?

>

>We were also informed that if we do the meeting now, one of his teachers

>will not be able to make it. Would any 504 layed down at the meeting apply

>to her regardless of her presence?

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Guest guest

Hi Faith and other parents:

You are right about some of the errors and I hope that educators would look

beyond that and realize this booklet is a good start. Also the stat of OCD

incidence as 1 in 200 children/adolescents may be out-of-date. I have

recently read of 1 in 50 but can't provide the reference right now because

the book is at home. I have also read that about 1 million

children/adolescents in the US have OCD. What is true is that the

incidence of OCD is much greater than previously realized due to secrecy,

embarassment and problems with correct diagnosis.

A couple more things that might be updated include adding Celexa as an SSRI

used for OCD and also changing the suggestion that OCD kids qualify as

" emotionally impaired " under 504. From what I understand from OCD

advocates it is more correct to classify OCD as " other health impaired " in

the 504 program. This is also less stigmatizing than the EI label.

We have been disappointed at the follow through by teachers and

administrators in reading OCD materials such as books, articles and

videotapes. What has worked better was translating the disorder into

classroom relevant information. Also my son's school at first would not

take him back as they were concerned about how the other kids would react.

So I had to go and talk to the kids in his three classes and explain what

had happened, how they could help, etc. The teachers were very relieved

not to have to do this themselves. Actually the kids for the most part

impressed me with their compassion, understanding and acceptance. Often it

is the adults who are more difficult to " educate " .

Take care, aloha, Kathy

kathyh@...

At 02:55 PM 3/15/99 -0500, you wrote:

>From: Faith Chmiel <fchmiel@...>

>

>The article you mention is full of good information; however, it is rife

>with typographical errors, a flaw that is very distracting to educators.

>Most importantly, the statistic cited in the article, " ...Jess is one of

>an estimated 200 school-age children in the United States suffering from

>obsessive-compulsive disorder... " is wrong. While some may consider

>these errors inconsequential, I feel they bring into question

>(especially in the minds of teachers) the credibility of the

>information.

>

>I contacted OCF and was told that Jim Broatch was no longer with the

>organization. I did copy the article and correct the errors so that I

>could provide a copy to my daughter's guidance counselor and

>vice-principal; however, I wasn't sure what the correct number was for

>the estimated number of school-age children in the U.S. suffering from

>OCD so I took the liberty of changing 200 to 200,000 (the number could

>be 2 million, but I decided to err on the side of caution). If you'd

>like a copy of the corrected article e-mailed to you (it's in

>WordPerfect) please let me know and I'll be happy to provide it, but I'm

>still waiting to hear from OCF to get the correct statistical

>information.

>

>Faith Chmiel

>

> What would you do...

>

>

>From: " W. Birk " <wb4@...>

>

>,

>

>Have you looked at the Fairlight Consulting web site??

>

> www.fairlite.com

>

>It has a article to print out for educators which is very good.

>

> http://www.fairlite.com/ocd/articles/school.shtml

>

>Suggest that they keep " Teaching the Tiger " as a reference as well. It

>would fit very well in your situation.

>

>

>good luck, wendy

>Get Your Private, Free Email at http://www.hotmail.com

>

>------------------------------------------------------------------------

>If you like orange and blue, then you will love our new web site!

>

>Onelist: ing connections and information exchange

>------------------------------------------------------------------------

>The is sponsored by the OCSDA. You may visit

>their web site at http://www.ocdhelp.org/ and view schedules for

>chatroom support at http://www.ocdhelp.org/chat.html

>

>------------------------------------------------------------------------

>Ideas on how we can improve ONElist?

>

>Check out the Suggestion Box feature on our new web site

>------------------------------------------------------------------------

>The is sponsored by the OCSDA. You may visit

their web site at http://www.ocdhelp.org/ and view schedules for chatroom

support at http://www.ocdhelp.org/chat.html

>

>

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  • 5 years later...
Guest guest

Bless you Kim for being so caring!!!

Shirl

Re: What would you do...

it's hard...i was on salary and i TRIED so hard not to be thinking how much I

just wanted to go home because I had already put in X amount of hours (which was

way over 8 per day). At the same time, I was feeling like listening was so

important and tried to block those thoughts.

anyway, talking to the patients was the best part of my job. There were

problems with the job that made me decide to quit. the health issues were also

part of it.

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  • 5 years later...
Guest guest

I am new to this group and I am hoping for some advice. My son is almost 5

months old and was diagnosed with Plagiocephaly and Torticollis at his 4 month

well baby check up. He has been going to PT for the past month and he is getting

a lot better. The flat spot on his head is filling out and getting a lot

rounder, but our biggest concern for him is the misalignment of his ears. So I

live in Pasco county, Florida (Northwest of Tampa area) and I have been calling

the two places that make helmets. Hanger is about 20-25 minutes away (at the

most) and West Coast Brace and Limb is just over an hour away (where he would

get a StarBand) and I'm not sure which to choose. I think he is moderate and on

the milder end of that, so it's not too bad. I am just looking for advice about

which to go to based on your experiences -- we have not met in person with

either yet, but both have been very friendly on the phone. Thank you!

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  • 1 year later...
Guest guest

I totally agree with giving them time off between casts/braces. I do not know how some of these moms handle never seeing and hugging their little babies skin. our doctor told us that we can take off the cast 7 days ahead of time and we should be fine. What I would suggest is going to Young Livings website and getting their Valor tube and rubbing it on her back everyday that she has the cast off. had his cast of for three weeks last time and he didn't loose a single degree, and I think the oils had a lot to do with it. Beth RettingerMother of In Seventh Cast From SLC

So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids.

Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace.

Thoughts??

Thanks!

Jane

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Guest guest

I totally agree with giving them time off between casts/braces. I do not know how some of these moms handle never seeing and hugging their little babies skin. our doctor told us that we can take off the cast 7 days ahead of time and we should be fine. What I would suggest is going to Young Livings website and getting their Valor tube and rubbing it on her back everyday that she has the cast off. had his cast of for three weeks last time and he didn't loose a single degree, and I think the oils had a lot to do with it. Beth RettingerMother of In Seventh Cast From SLC

So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids.

Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace.

Thoughts??

Thanks!

Jane

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Guest guest

Thanks Beth :) If it was just that she was going into another cast, I wouldn't hesitate. But she was molded for her brace at the End of April when she received her current cast. So it is the same shape as her current cast. Just don't know what that will mean if she is out of cast for a week before she gets the brace.

All this will happen this weekend if we do it, so I doubt I have time to order anything from a website, but I'll keep it in mind for the future :)

Jane

From: Leeper <bethanney05@...>infantile scoliosis treatment Sent: Wednesday, June 1, 2011 2:12 PMSubject: Re: What would you do...

I totally agree with giving them time off between casts/braces. I do not know how some of these moms handle never seeing and hugging their little babies skin. our doctor told us that we can take off the cast 7 days ahead of time and we should be fine. What I would suggest is going to Young Livings website and getting their Valor tube and rubbing it on her back everyday that she has the cast off. had his cast of for three weeks last time and he didn't loose a single degree, and I think the oils had a lot to do with it. Beth RettingerMother of In Seventh Cast From SLC

So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids.

Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace.

Thoughts??

Thanks!

Jane

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Guest guest

Thanks Beth :) If it was just that she was going into another cast, I wouldn't hesitate. But she was molded for her brace at the End of April when she received her current cast. So it is the same shape as her current cast. Just don't know what that will mean if she is out of cast for a week before she gets the brace.

All this will happen this weekend if we do it, so I doubt I have time to order anything from a website, but I'll keep it in mind for the future :)

Jane

From: Leeper <bethanney05@...>infantile scoliosis treatment Sent: Wednesday, June 1, 2011 2:12 PMSubject: Re: What would you do...

I totally agree with giving them time off between casts/braces. I do not know how some of these moms handle never seeing and hugging their little babies skin. our doctor told us that we can take off the cast 7 days ahead of time and we should be fine. What I would suggest is going to Young Livings website and getting their Valor tube and rubbing it on her back everyday that she has the cast off. had his cast of for three weeks last time and he didn't loose a single degree, and I think the oils had a lot to do with it. Beth RettingerMother of In Seventh Cast From SLC

So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids.

Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace.

Thoughts??

Thanks!

Jane

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Guest guest

I don't know Jane... I would call your casting doc.... If the brace mold will be made under anesthesia so manipulation can be done prior to the cast mold then it may be okay.... Summer time can be so tough!!!! Hope it works out so you can get some wet fun in!!!!

- Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Jane Bigler <janemhar@...>Subject: What would you do..."infantile scoliosis treatment " <infantile scoliosis treatment >Date: Wednesday, June 1, 2011, 6:56 PM

So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids.

Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace.

Thoughts??

Thanks!

Jane

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Guest guest

The mold and brace have already been made. We get the brace on 6/9, 5 days after the party and day I would remove the cast. I'm going to call the care coordinator tomorrow, just was curious what you all thought.

Jane

From: Kauffunger <slguerra710@...>infantile scoliosis treatment Sent: Wednesday, June 1, 2011 4:18 PMSubject: Re: What would you do...

I don't know Jane... I would call your casting doc.... If the brace mold will be made under anesthesia so manipulation can be done prior to the cast mold then it may be okay.... Summer time can be so tough!!!! Hope it works out so you can get some wet fun in!!!!

- Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Jane Bigler <janemhar@...>Subject: What would you do..."infantile scoliosis treatment " <infantile scoliosis treatment >Date: Wednesday, June 1, 2011, 6:56 PM

So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids.

Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace.

Thoughts??

Thanks!

Jane

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The mold and brace have already been made. We get the brace on 6/9, 5 days after the party and day I would remove the cast. I'm going to call the care coordinator tomorrow, just was curious what you all thought.

Jane

From: Kauffunger <slguerra710@...>infantile scoliosis treatment Sent: Wednesday, June 1, 2011 4:18 PMSubject: Re: What would you do...

I don't know Jane... I would call your casting doc.... If the brace mold will be made under anesthesia so manipulation can be done prior to the cast mold then it may be okay.... Summer time can be so tough!!!! Hope it works out so you can get some wet fun in!!!!

- Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Jane Bigler <janemhar@...>Subject: What would you do..."infantile scoliosis treatment " <infantile scoliosis treatment >Date: Wednesday, June 1, 2011, 6:56 PM

So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids.

Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace.

Thoughts??

Thanks!

Jane

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Jane,You know I'm no expert, but to me that seems fine. Heidi, Bexon's Mommy, (3.5 years old, in 10th cast from Salt Lake City Shriners, currently down from 63 degrees to 10.9 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Jane Bigler <janemhar@...>"infantile scoliosis treatment "

<infantile scoliosis treatment >Sent: Wed, June 1, 2011 11:56:04 AMSubject: What would you do...

So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids.

Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace.

Thoughts??

Thanks!

Jane

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Thanks Heidi :) I called and left a message for the care coordinator just minutes ago. The more I think about it, the more I think its ok. Afterall, her first brace took them 2 weeks before we could get it and they didn't worry about progression.

I know other kiddo's on here have waited a week after getting a cast off and being molded for a brace without regression. So I think I'm going to do it, but will wait to hear from our doctor today. IF they call me back ;)

Jane

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wednesday, June 1, 2011 9:03 PMSubject: Re: What would you do...

Jane,You know I'm no expert, but to me that seems fine.

Heidi, Bexon's Mommy, (3.5 years old, in 10th cast from Salt Lake City Shriners, currently down from 63 degrees to 10.9 in cast. You can read Bexon's Story on www.GirltoMom.com)

From: Jane Bigler <janemhar@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Wed, June 1, 2011 11:56:04 AMSubject: What would you do...

So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids.

Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace.

Thoughts??

Thanks!

Jane

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ditto From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Tasha FontenotSent: Wednesday, June 01, 2011 2:53 PMinfantile scoliosis treatment Subject: Re: What would you do... I would so take her out. But that is just me. Have you ask her doctor what he thinks? TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007. EARLY Treatment does work if done properly. You can read 's story at.... http://www.infantilescoliosis.org/stories.htmlOr follow our family one day at a time......http://thefontenotslife.blogspot.com/ From: Jane Bigler <janemhar@...> " infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Wed, June 1, 2011 1:56:04 PMSubject: What would you do... So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids. Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace. Thoughts?? Thanks! Jane

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Ditto…I think at least one day cast free is important for skin, and lots of hugs! From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of LeeperSent: Wednesday, June 01, 2011 3:13 PMinfantile scoliosis treatment Subject: Re: What would you do... I totally agree with giving them time off between casts/braces. I do not know how some of these moms handle never seeing and hugging their little babies skin. our doctor told us that we can take off the cast 7 days ahead of time and we should be fine. What I would suggest is going to Young Livings website and getting their Valor tube and rubbing it on her back everyday that she has the cast off. had his cast of for three weeks last time and he didn't loose a single degree, and I think the oils had a lot to do with it. Beth RettingerMother of In Seventh Cast From SLC So I have scheduled for Grace to get her brace a week from Friday (6/9). I was planning on removing the cast Thursday night, but her cousin's are having a b-day party this weekend (Sunday) and they plan to have wading pools, etc. for the kids. Do you think it would matter that much to the fit of the brace if I took her cast off Sunday morning so she can enjoy the party? That would be 5 days out of cast before getting the brace. Thoughts?? Thanks! Jane

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