Sue

[Guest guest]

Hi Sue.

" Kid's with ds can't... be dx'd w/asd!! " A quick visit to Dr. Capone's

web site by the behavioral sepcialist will clear all of this up for

her... Amazing what one can find when they do a search on the

Internet....

take care. debby (mom to Jordan 4 years, 8 months)

_________________________________________________________________________

______-

<<The behavioral specialist on the team is one of the two who said that

kids

with ds can't also be dx'd with asd!! Sue mom to Kate 13 and Karrie 7

w/ds and ?? >>

[Guest guest]

" Wow, Kim....wish I felt I was all those great things you said!! I've been

wanting to sleep all the time...I know it's my way of dealing with things. "

Sue:

You may not feel it now but remember how much more you deal with than

parents with a typical child or with a child with just one disability. Then

tack on that you do it alone. You may not feel awesome (which is

understandable) but you are.

Kudos on getting through the day!

Kim

[Guest guest]

In a message dated 9/3/03 8:27:16 AM Central Daylight Time,

writes:

> Karrie has slept maybe 7 hours in 3 nights...me, too, of course. I'm so

> exhausted tonight that I even considered looking for a husband...just for

> some help around here!!!

>

> Sue mom to Kate 13 and Karrie 7 w/ds and ??

Get that thought out of your head! They are good for some things but mine is

definitely more work than he is help.

Karyn

[Guest guest]

Karyn,

Don't worry...the needing husband thought must have been in a very fleeting

moment of weakness!!!! I'm back in my right mind now lol

Sue

I'm so

> exhausted tonight that I even considered looking for a husband...just for

> some help around here!!!

>

> Sue mom to Kate 13 and Karrie 7 w/ds and ??

Get that thought out of your head! They are good for some things but mine is

definitely more work than he is help.

Karyn

[Guest guest]

could be, nathan often sits up especiallly before he got his cpap machine

which keeps him breathing appropriately all nite, if he keeps it on but we

are in the middle on this issue, he will put it on and wears it at least

half the nite, or more-- and its at a very high pressure of 14 , plus the

heated humidity, which stops the snoring right away, He is twelve and we

cant stay awake all nite to put it back on constantly it does have an alarm

but often his mask might not have a great seal and then it goes off

constantly so we just listen with the monitor and it getsa loud woosh noise

if he takes it off, which is mostly when he is sleeping anyways, i dont

think he realizes he takes it off, goes to rubb his face or something and

just removes it. OOHHH, the big hlep was it reduced beavhior problems during

the day, he sleeps better, and it hleps him with his colds better too, the

heated humidity hleps keep it loose and he can sleep soo much better. he is

up for another sleep study this october, he has been movingand sitting up

lots lately again, im thinking a bipap would be better but its been several

years since his last eval so i relunctedly agreed, he hates getting all

those things on his head. uuug. shawna.

[Guest guest]

In a message dated 10/10/03 4:20:40 AM Central Daylight Time,

writes:

> We saw Dr. Capone for a 2.5 hour visit. He says that Karrie has mood

> disorder (if she were an adult, bipolar), OCD with anxiety and strong

> autistic traits. She will be on Depakote (sp) and will continue with the

> Risperdal. The behavioral plan that I wrote up, based on the one in the

> files for , was given a thumbs up by the behavioral specialists

> and

> Dr. Capone. (The school had poo-poo'd it, saying it wouldn't work).

>

> So, we are home after so many meltdowns that I lost track. During the

> worst

> one, at BWI this morning, she was lying facedown on the floor in the

> middle

> of the airport, the brilliant employee who worked for the airline told me

> to

> tell her to get up. I asked him again for the wheelchair that was supposed

> to have met us. He said, well get her to come over here and I'll get the

> chair. Needless to say, he got the chair and brought it to her. He leaned

> down to pick her up and said, wow, she's heavy. DUHHH...

>

> Anyway, once I struggle with the grieving (again) I'm feeling today, we

> will

> start tomorrow with a new plan to try to find my little girl inside this

> disease that has entrapped her.

>

> Thanks for listening,

>

> Sue mom to Kate 14 and Karrie 7 w/ds and other stuff

>

Sue,

Glad you made it back alive and with Karrie still alive. What a rough trip! I

know it would be with my also.

also has mood disorder as part of his diagnoses. I believe much of

's is genetic since his bio-mom and his 1/2brother both have mood

disorders.

I must tell you though that while he is still a handful at age 14 he is SOOO

much better than age 7 or 8. Then every transition was a battle. I hate to

think back to getting ready for school. Now mornings go by without major battles

over dressing, eating, waiting, breathing. Most days I can leave them alone in

a room together while I run to get something from the other room. If they

fight it is like two toddlers bickering rather than doing something lethal

to his brother.

Please get yourself some respite so you and Kate can have some time together

and so that you have time to rest and regroup so you can continue to be a

wonderful mom and meet Karrie's needs and be able to energy that fun times with

Karrie.

Karyn

[Guest guest]

Sue and Karyn and the e-group,

I am brand new to this group. My name is Rita, 54 years old, and I have a

17-year-old Down Syndrome daughter named . I also have four other

daughters. The youngest is 14 and the other three are grown and away from the

home, and they live within 1 to 2 hours. is about 4'8 " and 110 pounds.

She has been a very cheerful and socialable girl up until about 2 years ago.

She started Depo Provera shots when she was 13 and we think this might be part

of the cause of her depression and mood disorders. She does have an uncle and

grandmother with chemical imbalance/bi polar condition, also. She was put on

Paxil about one year ago and it worked great for most of the year. But

recently, her mood disorder/temper was coming back, so the doctor increased the

Paxil, but slept too much with that increase. So we went back down to

the one tablet (which is the minimum dosage for anyone). This did not help her

moods at all -- because just two days ago she became very violent. First it

happened at the hospital where she was getting her depo shot. (Usually she gets

it at the doctor's office, but the office was closed for a few days). She has

not minded the shot for the past five or six times (given every 3 months), but

this time she fought it. We ended up having 5 or 6 nurses holding her down and

giving the shot in her buttocks instead of her arm. She was fighting it hard.

When it was over and when she got off the bed, she hit two of the nurses, and

then yelled her displeasure as we walked down the hall to leave. When we got

into the car, and before I even got out of the small parking lot, she started

hitting me, her mom. I was just trying to make conversation, and since she was

still so mad, she yelled no to everything I said, then she would swing her arm

at my face. We were both buckled in the front seat. I was driving. I was so

shocked that she would do this. I tried to calm her but nothing helped. She

continued to hit me in the face several times, and she is strong. I kept on

thinking that she would stop soon, but she didn't. All of this happened in

about 1 to 2 minutes. I had to drive real slow as this was happening, and I

finally stopped the car (1 1/2 blocks from the hospital) and got out of it as

fast as I could. She then put her head down in her lap and bawled for about a

minute or two. Then she became calm and acted like nothing had happened. She

did say sorry (which we have taught her to say right along with excuse me, thank

you, please, etc.) and she was back to her normal self of being a happy

teenager. was put on Risperdal the very next day. She still takes the

Paxil in the morning and now Risperdal in the evening. We have an appointment

Thursday to see a doctor who is familiar with this in children with other

disabilities, so we shall see what she does.

My question is, has anyone found the cause of these mood disorders? Doctors

only treat the problem and never find the cause. And we always hesitate when

it comes to taking medicine to treat the symptoms, which only masquerades the

real cause.

I desperately need help. Many times it seems like we have to step around egg

shells so she doesn't get mad or irritated.

She has been so-so since Thursday. She is back to sleeping several hours in the

day. She does go to school Monday thru Thursday all day, and on Fridays she

just started working at an Opportunity Workshop (where about 50+ mentally

handicapped adults work). She likes school a lot and I think she likes the

workshop, too. Almost every late afternoon, she takes a very long nap.

Sometimes she sleeps all evening and only gets up to go to the bathroom. Half

of the time she doesn't want supper or a bath. She stays in bed and sleeps the

whole night, only getting up for bathroom and drinks. We are hoping we can find

a solution to her problem. We are from a very small town in Missouri, a

farming community. Kansas City is 2 hours away.

In school she is 95% of the time in a classroom with only one other student -- a

DS 19-year male (who happens to be the tallest DS that we have ever seen --

5'10 " or 11). He is very, very low functioning, though, but good natured. This

small school is not up to date when it comes to supporting these kinds of kids.

It is like they don't know what to do with them, or they are just too lazy to

provide a better education for them. Her teacher, who is a para (assistant

teacher) is pretty good, though, but has hardly any interaction with

other students, let along mainstreaming -- only P.E. once a week and a little

homemaking class last year. We have moved a few times (California and Idaho)

since she was born, though, and has been in fairly good schools --

preschool, grade school, middle school and a high school. She was mainstreamed

in the past with a full-time aide, and a good speech therapist. We have tried

to get more help since we moved to this small community 1 1/2 years ago, but to

no avail. We always have an advocate with us, but not much help. use to

be in hippo therapy for four years in Idaho, but it's too far away here in

Missouri. does have a augmentative communication device called the

Dynavox/Dynamite (like a talking computer that helps her communicate), but she

doesn't use it very often because she isn't interested in it. But we keep

trying. Her speech is about 60 to 70% intelligible. She can read small words

-- about 100+ words.

I hope this gives you a good picture of her. We, her family, have a close, good

relationship with each other and a very good religious upbringing.

Sincerely and your friend,

Rita

[Guest guest]

Rita,

's psychiatrist found that children with developmental disabilities show

an increase in anxieties when on SSRI medications like paxil.

Maybe going to the hospital to get her shot set her off - especially if she has

issues of sameness. It could also mean that she has associated the shot with

some side effects that she can't verbalize. Those shots are not healthy (that

is my humble opinion).

As far as the cause of the mood changes - the other day I wrote " Our kids are

not the average children with Down syndrome - the extra genes expressed have

played havoc with our children's neurological system in a bigger way. "

I would also suggest (if you haven't already) reading the healthcare guidelines

for people with Down syndrome at http://ds-health.com. Children's Mercy

Hospital in KC and Children's Hospital, Washington UMC in St Louis have Down

syndrome clinics. More information is found at the web site I mentioned above.

Anyway, welcome to this group! You'll find a few other parents from Missouri

who are frequent posters.

Re: Sue

Sue and Karyn and the e-group,

I am brand new to this group. My name is Rita, 54 years old, and I have a

17-year-old Down Syndrome daughter named . I also have four other

daughters. The youngest is 14 and the other three are grown and away from the

home, and they live within 1 to 2 hours. is about 4'8 " and 110 pounds.

She has been a very cheerful and socialable girl up until about 2 years ago.

She started Depo Provera shots when she was 13 and we think this might be part

of the cause of her depression and mood disorders. She does have an uncle and

grandmother with chemical imbalance/bi polar condition, also. She was put on

Paxil about one year ago and it worked great for most of the year. But

recently, her mood disorder/temper was coming back, so the doctor increased the

Paxil, but slept too much with that increase. So we went back down to

the one tablet (which is the minimum dosage for anyone). This did not help her

moods at all -- because just two days ago she became very violent. First it

happened at the hospital where she was getting her depo shot. (Usually she gets

it at the doctor's office, but the office was closed for a few days). She has

not minded the shot for the past five or six times (given every 3 months), but

this time she fought it. We ended up having 5 or 6 nurses holding her down and

giving the shot in her buttocks instead of her arm. She was fighting it hard.

When it was over and when she got off the bed, she hit two of the nurses, and

then yelled her displeasure as we walked down the hall to leave. When we got

into the car, and before I even got out of the small parking lot, she started

hitting me, her mom. I was just trying to make conversation, and since she was

still so mad, she yelled no to everything I said, then she would swing her arm

at my face. We were both buckled in the front seat. I was driving. I was so

shocked that she would do this. I tried to calm her but nothing helped. She

continued to hit me in the face several times, and she is strong. I kept on

thinking that she would stop soon, but she didn't. All of this happened in

about 1 to 2 minutes. I had to drive real slow as this was happening, and I

finally stopped the car (1 1/2 blocks from the hospital) and got out of it as

fast as I could. She then put her head down in her lap and bawled for about a

minute or two. Then she became calm and acted like nothing had happened. She

did say sorry (which we have taught her to say right along with excuse me, thank

you, please, etc.) and she was back to her normal self of being a happy

teenager. was put on Risperdal the very next day. She still takes the

Paxil in the morning and now Risperdal in the evening. We have an appointment

Thursday to see a doctor who is familiar with this in children with other

disabilities, so we shall see what she does.

My question is, has anyone found the cause of these mood disorders? Doctors

only treat the problem and never find the cause. And we always hesitate when

it comes to taking medicine to treat the symptoms, which only masquerades the

real cause.

I desperately need help. Many times it seems like we have to step around egg

shells so she doesn't get mad or irritated.

She has been so-so since Thursday. She is back to sleeping several hours in

the day. She does go to school Monday thru Thursday all day, and on Fridays

she just started working at an Opportunity Workshop (where about 50+ mentally

handicapped adults work). She likes school a lot and I think she likes the

workshop, too. Almost every late afternoon, she takes a very long nap.

Sometimes she sleeps all evening and only gets up to go to the bathroom. Half

of the time she doesn't want supper or a bath. She stays in bed and sleeps the

whole night, only getting up for bathroom and drinks. We are hoping we can find

a solution to her problem. We are from a very small town in Missouri, a

farming community. Kansas City is 2 hours away.

In school she is 95% of the time in a classroom with only one other student --

a DS 19-year male (who happens to be the tallest DS that we have ever seen --

5'10 " or 11). He is very, very low functioning, though, but good natured. This

small school is not up to date when it comes to supporting these kinds of kids.

It is like they don't know what to do with them, or they are just too lazy to

provide a better education for them. Her teacher, who is a para (assistant

teacher) is pretty good, though, but has hardly any interaction with

other students, let along mainstreaming -- only P.E. once a week and a little

homemaking class last year. We have moved a few times (California and Idaho)

since she was born, though, and has been in fairly good schools --

preschool, grade school, middle school and a high school. She was mainstreamed

in the past with a full-time aide, and a good speech therapist. We have tried

to get more help since we moved to this small community 1 1/2 years ago, but to

no avail. We always have an advocate with us, but not much help. use to

be in hippo therapy for four years in Idaho, but it's too far away here in

Missouri. does have a augmentative communication device called the

Dynavox/Dynamite (like a talking computer that helps her communicate), but she

doesn't use it very often because she isn't interested in it. But we keep

trying. Her speech is about 60 to 70% intelligible. She can read small words

-- about 100+ words.

I hope this gives you a good picture of her. We, her family, have a close,

good relationship with each other and a very good religious upbringing.

Sincerely and your friend,

Rita

[Guest guest]

In Karrie's case, the Prozac not only caused insomnia, but also aggravated

her aggressiveness. There is such a change in her behavior already that it

is almost unbelievable!!

I plan to answer all messages and tell you all more about what's going on

here later. We just got home from church (where Karrie was an absolute

joy!!) and we are leaving in a couple of minutes to go to a local pumpkin

festival to get our pumpkins!!

And by the way, the Down Syndrome Clinic at Children's in St. Louis is not

running at the present time. But as a member of the board of directors of

the DSA in St. Louis, we're working on it!!

Sue mom to Kate 14 and Karrie 7 w/ds and mood disorder, OCD and anxiety

issues (who is showing more and more glimpses of the child who has been

trapped inside)

[Guest guest]

>Why can't you have a birthday cake Sue?

Nothing mysterious. With over 100 pounds to lose, cake is really not an

approved food on just about every meal plan. Also, nobody here eats it. I

hadn't had cake, cookies or candy for 20 years because of my hypoglycemia,

and that was just fine for my boys, since Ed prefers cookies or chips and

Henry hates cake of all kinds.

This year, I just felt because it was a big birthday that I wanted the

traditional cake, but after serious thought, it just wasn't worth it. I had

a nice healthy banana bread, the rest in packed away in the freezer so I can

take out one piece a day after it thaws, making it harder for impulsive

eating. It was all I needed to satisfy the cake urge.

Sue

[Guest guest]

----- Original Message -----

From: " Sue in NJ " <susang@...>

> This year, I just felt because it was a big birthday that I wanted the

> traditional cake, but after serious thought, it just wasn't worth it. I

had

> a nice healthy banana bread, the rest in packed away in the freezer so I

can

> take out one piece a day after it thaws, making it harder for impulsive

> eating. It was all I needed to satisfy the cake urge.

Your bread sounds yummy and like a good choice for a birthday celebration.

You could also get one cupcake at the grocery store. My birthday is in Dec.

so I'll have to figure out how to deal with that. I was in Starbucks Tues.

night getting my new favorite latte which is sugar free with non-fat milk.

(I add about 4 packets of Equal and it tastes similar to yummy, sugary

frappucino) They have sinful looking carrot cake. A piece of that would be

a wonderful treat but portion controlled.

Ann

[Guest guest]

> You could also get one cupcake at the grocery store.

That is a good idea! They have some pretty nice looking ones as

well!

My birthday is in Dec.

> so I'll have to figure out how to deal with that.

Oh I think December is going to hard to deal with in general, I can't

imagine having a birthday then as well!

I was in Starbucks Tues.

<snip>They have sinful looking carrot cake. A piece of that would be

> a wonderful treat but portion controlled.

All I can say about this is watch calories (if your into that)

because I saw a carrot cake on the reduced rack a few months ago, I

thought " oh that can't be *that* bad and should be somewhat healthy "

***WRONG*** I looked at the nutrition label, 1/16 of this *small*

(6 " maybe) cake had over 500 calories. To me it just isn't worth it.

a

[Guest guest]

----- Original Message -----

From: " a " <amm@...>

> ***WRONG*** I looked at the nutrition label, 1/16 of this *small*

> (6 " maybe) cake had over 500 calories. To me it just isn't worth it.

Yep but this would be a one time thing as a birthday treat.

Ann

[Guest guest]

Sue,

I definately think casting is better then bracing. Please get

's video, you will be so much better educated after watching

it. Serial Corrective Plaster Casts have actually cured children.

Bracing stops the curve from progressing and is alot harder on the

child. If you would like to chat I would be more then happy to talk

with you. I will email my # to you privately and if you want to

chat call me and I will call you right back. You definately need to

speak with one of us.

Crista

I am emailing my # now to your email.

[Guest guest]

I do not see how putting your child in a cast is any easier than bracing!!

Truly bracing can do amazing things for some children's well as casting

could do the same. But to say one is better, I would most defiantly say that

a brace is. In my opinion putting your child through the horror of being in

a cast is in humane. I am amazed at how you just keep plugging along while

your children get worse. Your job is to advocate for them not to torture

them, if your child was in a brace they could bathe they could go swimming,

Oh but lets put them in a cast where they get sores and they smell and they

are unable to do the things normal kids do. I think you all need to get out

of your casting bubble and look at the other options. You say surgery is

terrible and the last thing you will ever do but I tell you while your child

sits in a cast all summer and is hot and cranky ,and in pain, the children

of parents that really wanted to advocate for there child and looked at all

options will be healed form surgery and moving on to lead a better life. I

hope you all find what is best for your child but please do not stop here

keep looking and see the world beyond a group of girl friends making things

worse than what they really are.

Original Message -----

From: " cristab1 " <cristab@...>

<infantile scoliosis treatment >

Sent: Friday, January 09, 2004 5:24 PM

Subject: Re: Sue

> Sue,

> I definately think casting is better then bracing. Please get

> 's video, you will be so much better educated after watching

> it. Serial Corrective Plaster Casts have actually cured children.

> Bracing stops the curve from progressing and is alot harder on the

> child. If you would like to chat I would be more then happy to talk

> with you. I will email my # to you privately and if you want to

> chat call me and I will call you right back. You definately need to

> speak with one of us.

> Crista

> I am emailing my # now to your email.

>

>

>

>

>

[Guest guest]

I do not see how putting your child in a cast is any easier than bracing!!

Truly bracing can do amazing things for some children's well as casting

could do the same. But to say one is better, I would most defiantly say that

a brace is. In my opinion putting your child through the horror of being in

a cast is in humane. I am amazed at how you just keep plugging along while

your children get worse. Your job is to advocate for them not to torture

them, if your child was in a brace they could bathe they could go swimming,

Oh but lets put them in a cast where they get sores and they smell and they

are unable to do the things normal kids do. I think you all need to get out

of your casting bubble and look at the other options. You say surgery is

terrible and the last thing you will ever do but I tell you while your child

sits in a cast all summer and is hot and cranky ,and in pain, the children

of parents that really wanted to advocate for there child and looked at all

options will be healed form surgery and moving on to lead a better life. I

hope you all find what is best for your child but please do not stop here

keep looking and see the world beyond a group of girl friends making things

worse than what they really are.

Original Message -----

From: " cristab1 " <cristab@...>

<infantile scoliosis treatment >

Sent: Friday, January 09, 2004 5:24 PM

Subject: Re: Sue

> Sue,

> I definately think casting is better then bracing. Please get

> 's video, you will be so much better educated after watching

> it. Serial Corrective Plaster Casts have actually cured children.

> Bracing stops the curve from progressing and is alot harder on the

> child. If you would like to chat I would be more then happy to talk

> with you. I will email my # to you privately and if you want to

> chat call me and I will call you right back. You definately need to

> speak with one of us.

> Crista

> I am emailing my # now to your email.

>

>

>

>

>

[Guest guest]

I do not see how putting your child in a cast is any easier than bracing!!

Truly bracing can do amazing things for some children's well as casting

could do the same. But to say one is better, I would most defiantly say that

a brace is. In my opinion putting your child through the horror of being in

a cast is in humane. I am amazed at how you just keep plugging along while

your children get worse. Your job is to advocate for them not to torture

them, if your child was in a brace they could bathe they could go swimming,

Oh but lets put them in a cast where they get sores and they smell and they

are unable to do the things normal kids do. I think you all need to get out

of your casting bubble and look at the other options. You say surgery is

terrible and the last thing you will ever do but I tell you while your child

sits in a cast all summer and is hot and cranky ,and in pain, the children

of parents that really wanted to advocate for there child and looked at all

options will be healed form surgery and moving on to lead a better life. I

hope you all find what is best for your child but please do not stop here

keep looking and see the world beyond a group of girl friends making things

worse than what they really are.

Original Message -----

From: " cristab1 " <cristab@...>

<infantile scoliosis treatment >

Sent: Friday, January 09, 2004 5:24 PM

Subject: Re: Sue

> Sue,

> I definately think casting is better then bracing. Please get

> 's video, you will be so much better educated after watching

> it. Serial Corrective Plaster Casts have actually cured children.

> Bracing stops the curve from progressing and is alot harder on the

> child. If you would like to chat I would be more then happy to talk

> with you. I will email my # to you privately and if you want to

> chat call me and I will call you right back. You definately need to

> speak with one of us.

> Crista

> I am emailing my # now to your email.

>

>

>

>

>

[Guest guest]

Mike,

That is so great to hear from a Dad!! Thanks.

[Guest guest]

I am the father of a 28month old girl named she has infantile scoliosis I was beside myself when my wife wanted me to read your email. Everyone here in this group comes here for hope for their children,not to hear negativity from someone that has no idea of what they are talking about! I was one that was sceptical of having my baby girl casted, but she had been in a brace for about 10 months with a 36 degrees thorasic and 30 degrees lumbar within the 10 months in the brace she jumped to 55 degrees thoracic and 47 degrees lumbar. Everywhere we turned we were told shes so young she will get better, but my wife did not except them kind of answers, and she started researching, and thank you to ,this website, East Liverpool shrine club,and the Shriner Hospital in Erie, and especially Dr. . We had casted and to this date she is at a 25 degrees with no sores, no bad smells of the cast, and she actually gets around better then she did before, because her spine was at such a curve she was constatly falling down. She is everytihing to me and i was at first against having her casted because i thought it would be painful for her and she would be misserable, but to my suprise she is a very happy 2 year old little girl, It does restrict her some but she can keep right up with her 5 year old brother and plays very well. If a cast can help our little girl, and all she has to do is not be able to take a bath for a few months, then my god its well worth it! And i know this is far better than having to go through surgery. ( IVE BEEN THEIR,DONE THAT!) And to put a child through something like that when theirs other options such as casting. I know in my heart we made the right choice, she is getting better! and most likely by summer she will be swimming with her brother and sister in the pool! So let me just tell you,or anyone else who thinks casting your child is torture and a horror, all you have to do is spend 5 minutes with and you would see that she is as happy as any other 28 month old little girl! I thank and everyone else who has been here for my wife, you all have been a nice shoulder for her to lean on in these tough times,when she needs someone to talk to.

Re: Sue> Sue,> I definately think casting is better then bracing. Please get> 's video, you will be so much better educated after watching> it. Serial Corrective Plaster Casts have actually cured children.> Bracing stops the curve from progressing and is alot harder on the> child. If you would like to chat I would be more then happy to talk> with you. I will email my # to you privately and if you want to> chat call me and I will call you right back. You definately need to> speak with one of us.> Crista> I am emailing my # now to your email.>>>>>

[Guest guest]

Wow. WHat a nasty attack!

" the children of parents that really wanted to advocate for there child and

looked at all

options will be healed form surgery and moving on to lead a better life "

I for one would NEVER put my child through surgery unless there is no other

choice.. To me, that is a last ditch effort.

I work as an RN and every day I see patients that have fusions that have

little, if no relief from back surgery. Some end up worse.

I was a surgical technician for several years before I became a nurse and I

worked for awhile on a pediatric OR team. I have seen the surgery for

scoliosis bracing FIRST HAND. IT IS AN EXTREMELY INVASIVE PROCEDURE. There

is usually alot of blood loss and the surgery can be very risky. The child

was " opened up " both on the front and back. The surgery made a huge

impression on me.

Now, I am sure that some people benefit from it. But I know alot of people

that say they didn't.

How dare you attack these women for advocating for their children. You have

your right to your opinion, but you were just down right sarcastic and

persecuting.

>From: " " <rachel@...>

>Reply-infantile scoliosis treatment

><infantile scoliosis treatment >

>Subject: Re: Re: Sue

>Date: Fri, 9 Jan 2004 23:51:09 -0800

>

>I do not see how putting your child in a cast is any easier than bracing!!

>Truly bracing can do amazing things for some children's well as casting

>could do the same. But to say one is better, I would most defiantly say

>that

>a brace is. In my opinion putting your child through the horror of being

>in

>a cast is in humane. I am amazed at how you just keep plugging along while

>your children get worse. Your job is to advocate for them not to torture

>them, if your child was in a brace they could bathe they could go

>swimming,

>Oh but lets put them in a cast where they get sores and they smell and they

>are unable to do the things normal kids do. I think you all need to get out

>of your casting bubble and look at the other options. You say surgery is

>terrible and the last thing you will ever do but I tell you while your

>child

>sits in a cast all summer and is hot and cranky ,and in pain, the children

>of parents that really wanted to advocate for there child and looked at all

>options will be healed form surgery and moving on to lead a better life. I

>hope you all find what is best for your child but please do not stop here

>keep looking and see the world beyond a group of girl friends making things

>worse than what they really are.

>

>

>

>

>Original Message -----

>From: " cristab1 " <cristab@...>

><infantile scoliosis treatment >

>Sent: Friday, January 09, 2004 5:24 PM

>Subject: Re: Sue

>

>

> > Sue,

> > I definately think casting is better then bracing. Please get

> > 's video, you will be so much better educated after watching

> > it. Serial Corrective Plaster Casts have actually cured children.

> > Bracing stops the curve from progressing and is alot harder on the

> > child. If you would like to chat I would be more then happy to talk

> > with you. I will email my # to you privately and if you want to

> > chat call me and I will call you right back. You definately need to

> > speak with one of us.

> > Crista

> > I am emailing my # now to your email.

> >

> >

> >

> >

> >

[Guest guest]

As someone who spent her childhood in plaster casts, from the age of

6 months until the age of 10 years (with Milwaukee braces in the

summer months), I put my FULL SUPPORT behind casting young children

with scoliosis. There is no doubt in my mind that the casts held my

curves and prevented me from ending up with terrible irreversible

deformities. I doubt the Milwaukee did much good as it always seemed

to slacken off instead of putting constant pressure on my spine.

Yes, it was annoying that the casts got hot in the summer, and that I

couldnt swim or have full baths. But, having had this condition since

a baby, I didn't really know any different. I saw my treatment as a

normal part of my life and just got on with it, and although I was

born with a 60/40 degree double curve all my treatment has been so

successful that no-one can really tell I have ever had a problem with

my back.

However, I did have surgery at ten, and just sailed through that

too :-)

> Wow. WHat a nasty attack!

>

>

> " the children of parents that really wanted to advocate for there

child and

> looked at all

> options will be healed form surgery and moving on to lead a better

life "

>

>

> I for one would NEVER put my child through surgery unless there is

no other

> choice.. To me, that is a last ditch effort.

>

> I work as an RN and every day I see patients that have fusions that

have

> little, if no relief from back surgery. Some end up worse.

>

> I was a surgical technician for several years before I became a

nurse and I

> worked for awhile on a pediatric OR team. I have seen the surgery

for

> scoliosis bracing FIRST HAND. IT IS AN EXTREMELY INVASIVE

PROCEDURE. There

> is usually alot of blood loss and the surgery can be very risky.

The child

> was " opened up " both on the front and back. The surgery made a huge

> impression on me.

>

> Now, I am sure that some people benefit from it. But I know alot of

people

> that say they didn't.

>

> How dare you attack these women for advocating for their children.

You have

> your right to your opinion, but you were just down right sarcastic

and

> persecuting.

>

>

>

>

> >From: " " <rachel@r...>

> >Reply-infantile scoliosis treatment

> ><infantile scoliosis treatment >

> >Subject: Re: Re: Sue

> >Date: Fri, 9 Jan 2004 23:51:09 -0800

> >

> >I do not see how putting your child in a cast is any easier than

bracing!!

> >Truly bracing can do amazing things for some children's well as

casting

> >could do the same. But to say one is better, I would most

defiantly say

> >that

> >a brace is. In my opinion putting your child through the horror

of being

> >in

> >a cast is in humane. I am amazed at how you just keep plugging

along while

> >your children get worse. Your job is to advocate for them not to

torture

> >them, if your child was in a brace they could bathe they could go

> >swimming,

> >Oh but lets put them in a cast where they get sores and they smell

and they

> >are unable to do the things normal kids do. I think you all need

to get out

> >of your casting bubble and look at the other options. You say

surgery is

> >terrible and the last thing you will ever do but I tell you while

your

> >child

> >sits in a cast all summer and is hot and cranky ,and in pain, the

children

> >of parents that really wanted to advocate for there child and

looked at all

> >options will be healed form surgery and moving on to lead a better

life. I

> >hope you all find what is best for your child but please do not

stop here

> >keep looking and see the world beyond a group of girl friends

making things

> >worse than what they really are.

> >

> >

> >

> >

> >Original Message -----

> >From: " cristab1 " <cristab@a...>

> ><infantile scoliosis treatment >

> >Sent: Friday, January 09, 2004 5:24 PM

> >Subject: Re: Sue

> >

> >

> > > Sue,

> > > I definately think casting is better then bracing. Please get

> > > 's video, you will be so much better educated after

watching

> > > it. Serial Corrective Plaster Casts have actually cured

children.

> > > Bracing stops the curve from progressing and is alot harder on

the

> > > child. If you would like to chat I would be more then happy to

talk

> > > with you. I will email my # to you privately and if you want to

> > > chat call me and I will call you right back. You definately

need to

> > > speak with one of us.

> > > Crista

> > > I am emailing my # now to your email.

> > >

> > >

> > >

> > >

> > >

[Guest guest]

That's AWESOME!!!!!!!!!!!!!!!!!!!!!!

>From: " antonia_barker " <antonia_barker@...>

>Reply-infantile scoliosis treatment

>infantile scoliosis treatment

>Subject: Re: Sue

>Date: Wed, 14 Jan 2004 07:37:54 -0000

>

>As someone who spent her childhood in plaster casts, from the age of

>6 months until the age of 10 years (with Milwaukee braces in the

>summer months), I put my FULL SUPPORT behind casting young children

>with scoliosis. There is no doubt in my mind that the casts held my

>curves and prevented me from ending up with terrible irreversible

>deformities. I doubt the Milwaukee did much good as it always seemed

>to slacken off instead of putting constant pressure on my spine.

>

>Yes, it was annoying that the casts got hot in the summer, and that I

>couldnt swim or have full baths. But, having had this condition since

>a baby, I didn't really know any different. I saw my treatment as a

>normal part of my life and just got on with it, and although I was

>born with a 60/40 degree double curve all my treatment has been so

>successful that no-one can really tell I have ever had a problem with

>my back.

>

>However, I did have surgery at ten, and just sailed through that

>too :-)

>

>

>

>

> > Wow. WHat a nasty attack!

> >

> >

> > " the children of parents that really wanted to advocate for there

>child and

> > looked at all

> > options will be healed form surgery and moving on to lead a better

>life "

> >

> >

> > I for one would NEVER put my child through surgery unless there is

>no other

> > choice.. To me, that is a last ditch effort.

> >

> > I work as an RN and every day I see patients that have fusions that

>have

> > little, if no relief from back surgery. Some end up worse.

> >

> > I was a surgical technician for several years before I became a

>nurse and I

> > worked for awhile on a pediatric OR team. I have seen the surgery

>for

> > scoliosis bracing FIRST HAND. IT IS AN EXTREMELY INVASIVE

>PROCEDURE. There

> > is usually alot of blood loss and the surgery can be very risky.

>The child

> > was " opened up " both on the front and back. The surgery made a huge

> > impression on me.

> >

> > Now, I am sure that some people benefit from it. But I know alot of

>people

> > that say they didn't.

> >

> > How dare you attack these women for advocating for their children.

>You have

> > your right to your opinion, but you were just down right sarcastic

>and

> > persecuting.

> >

> >

> >

> >

> > >From: " " <rachel@r...>

> > >Reply-infantile scoliosis treatment

> > ><infantile scoliosis treatment >

> > >Subject: Re: Re: Sue

> > >Date: Fri, 9 Jan 2004 23:51:09 -0800

> > >

> > >I do not see how putting your child in a cast is any easier than

>bracing!!

> > >Truly bracing can do amazing things for some children's well as

>casting

> > >could do the same. But to say one is better, I would most

>defiantly say

> > >that

> > >a brace is. In my opinion putting your child through the horror

>of being

> > >in

> > >a cast is in humane. I am amazed at how you just keep plugging

>along while

> > >your children get worse. Your job is to advocate for them not to

>torture

> > >them, if your child was in a brace they could bathe they could go

> > >swimming,

> > >Oh but lets put them in a cast where they get sores and they smell

>and they

> > >are unable to do the things normal kids do. I think you all need

>to get out

> > >of your casting bubble and look at the other options. You say

>surgery is

> > >terrible and the last thing you will ever do but I tell you while

>your

> > >child

> > >sits in a cast all summer and is hot and cranky ,and in pain, the

>children

> > >of parents that really wanted to advocate for there child and

>looked at all

> > >options will be healed form surgery and moving on to lead a better

>life. I

> > >hope you all find what is best for your child but please do not

>stop here

> > >keep looking and see the world beyond a group of girl friends

>making things

> > >worse than what they really are.

> > >

> > >

> > >

> > >

> > >Original Message -----

> > >From: " cristab1 " <cristab@a...>

> > ><infantile scoliosis treatment >

> > >Sent: Friday, January 09, 2004 5:24 PM

> > >Subject: Re: Sue

> > >

> > >

> > > > Sue,

> > > > I definately think casting is better then bracing. Please get

> > > > 's video, you will be so much better educated after

>watching

> > > > it. Serial Corrective Plaster Casts have actually cured

>children.

> > > > Bracing stops the curve from progressing and is alot harder on

>the

> > > > child. If you would like to chat I would be more then happy to

>talk

> > > > with you. I will email my # to you privately and if you want to

> > > > chat call me and I will call you right back. You definately

>need to

> > > > speak with one of us.

> > > > Crista

> > > > I am emailing my # now to your email.

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Sue,

My older son went through early intervention also. I live in California and it was offered through our county. Insurance does not matter. I had a ppo and the county paid for for 3 years of PT and speech therapy. I would contact the county you live in or the school district to find out the info. Also if you have a Pediatric PT place near you they can also give you the name of the person to contact.

Crista

[Guest guest]

Hi Sue,

My older son had Kyphosis at 23 degreees due to hypotonia which is low muscle tone. He was in PT and speech for 2 years. He grew out of the Kyphosis and is completely normal and age appropriate now. He might be a little clumsy sometimes but I also put him in Gymnastics and swimming to help build muscles.

, my younger son is now 14 months old with Idiopathic Infantile Scoliosis. He was at 50 gerees at 4 months old, he is now at 23 in his 3rd cast. has no delays and he is actually my wild boy. Crawling and walking early. The cast has not stopped him at all! Does your child have congenital or idiopathic? I know I already read it but I can't remember. Sorry.

Crista

[Guest guest]

Sue,

Does your child have Scoliosis and Kyphosis? Or just Scoliosis?

Crista