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temperature and CMT

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Our school Principal wants the doctor to write exactly at what temperature CMT

is effected. I can't believe how awful this school is being. So would anyone

like to tell me what temperature effects their CMT? I know for me it is

impossible to say what degree sets me off.

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,

Did the principal mean inside or outside of the classroom? And WTF does she need

to know anyway? Your kids of course are dressed appropriately for our weather

and I'm certain you have something about the cold in winter and our heat waves

their IEPs along with everything else? I have never seen any CMT research on

this, nor have I heard speakers allude to this.

Hit the ball back in her court and ask WHY does she need to know? Are they going

to change the kids classrooms for better acessibility, but afraid the rooms are

too hot or too cold? Doesn't make sense. Better yet, refer her to your attorney

because this is another totally stupid and interferring act by school personnel.

Gretchen

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i agree. How can you possible determine the temperature thing. Our bodies change

day to day. Cold affects my body, but i could never give an " exact " temperature

as to when it bothers me.

RIDICULOUS!!!!

Jackie

Re: temperature and CMT

 

,

Did the principal mean inside or outside of the classroom? And WTF does she need

to know anyway? Your kids of course are dressed appropriately for our weather

and I'm certain you have something about the cold in winter and our heat waves

their IEPs along with everything else? I have never seen any CMT research on

this, nor have I heard speakers allude to this.

Hit the ball back in her court and ask WHY does she need to know? Are they going

to change the kids classrooms for better acessibility, but afraid the rooms are

too hot or too cold? Doesn't make sense. Better yet, refer her to your attorney

because this is another totally stupid and interferring act by school personnel.

Gretchen

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Hi ,

Thank you for responding to my post. I believe the Principal thinks that CMT is

not a real disease and that I am trying to take advantage of the " system " . He

has most of the handicapped parking locked off no one can access all but two

spaces.

I really hate this school. I hope their butts get nailed to the wall as well.

In a message dated 3/22/2010 5:49:16 P.M. Pacific Daylight Time,

lalbrecht02@... writes:

Is this dope going to give your kids assistance only on cold days? Hot

days? Honestly! I hope your lawyer nails their butts to the wall!

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I agree Jackie its RIDICULOUS! Maybe they are trying to beat me down until

I go away?

For some reason we stay and fight.

In a message dated 3/22/2010 10:42:17 A.M. Pacific Daylight Time,

jackiesachs@... writes:

RIDICULOUS!!RIDI

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The issue came up because my daughter has to wait for the outside

elevators. They forget to let her up the elevator so she stands and waits and

waits. Her hands get so cold she can not use them. The doctor has written that

they need to avoid extreme weather. So now they wanna know what degree is

considered extreme. My daughter has a 504 plan. My son an IEP.

In a message dated 3/22/2010 9:22:51 A.M. Pacific Daylight Time,

gfijig@... writes:

Did the principal mean inside or outside of the classroom? And WTF does

she need to know anyway? Your kids of course are dressed appropriately for

our weather and I'm certain you have something about the cold in winter and

our heat waves their IEPs along with everything else? I have never seen any

CMT research on this, nor have I heard speakers allude to this.

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That is how it is for me too. 74 is a little cold.

In a message dated 3/22/2010 9:09:00 A.M. Pacific Daylight Time,

hotwheels@... writes:

For me it is anything below 74*..and or above 87* depending on the

humidity....For me it is anything below 74*..and or above 87* dep

Geri

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Oh for Pete's sake! What is WRONG with that idiot?!? This is absolutely

ludicrous! I haven't said anything so far on this school topic b/c I don't have

kids, but really, this school has me ticked off!

I have CMT from -20F to 110F: that is the potential temperature range in New

England, and it may or may not affect my CMT! My hands and arms hurt in the

cold; sometimes from the wind making my hands achy and inoperable if I am not

wearing gloves, and other times from the stress of shoveling - gripping the

shovel handle while wearing thick gloves, and lifting snow when I am not

accustomed to it. On the other end of the spectrum, I get totally wiped out

like a rag doll in the heat and humidity, but so does my mother and she doesn't

have CMT!

If I had to choose, I'd say that the temperature extremes affect me more because

of my asthma than my CMT.

I guess my point is that CMT is what it is, and the school district should

accommodate your kids, period! Is this dope going to give your kids assistance

only on cold days? Hot days? Honestly! I hope your lawyer nails their butts

to the wall!

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-

I'm confused! How did the principal connect the CMT disease to temperature in

the first place? Sounds like he/she is trying a delaying tactic or is hoping

that your request??? goes away!

>

> Our school Principal wants the doctor to write exactly at what temperature CMT

is effected. I can't believe how awful this school is being. So would anyone

like to tell me what temperature effects their CMT? I know for me it is

impossible to say what degree sets me off.

>

>

>

>

>

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I'd say 'extreme' sensitivity to temperatures would mean and temperature either

indoors or outdoors that provokes sensations that exacerabate CMT symptoms.

Example, your daughter's cold hands while she waits and waits for the elevator,

and then cannnot use them in class to take notes.

Gretchen

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Hi ..........today it is only 4 degrees Celsius outside today in Port

Elgin, ON Canada, (about 40 to you) in California. It is imperative that I wear

gloves and keep my hands warm. At this moment my hands are a little cold which

makes it hard for me to type without pain in my fingertips. My pain levels go up

the colder it gets, even in air conditioned places. To describe my pain to the

non-believers, and there are still some out there, I ask them to do a silly

thing we did as kids. That is, place your baby fingers in your mouth and bite

down on your finger nails for about 20-30 seconds. Then take your baby fingers,

hook them together and pull. Yepper, that's the pain.

I agree with others...it is impossible to put an exact temperature on when you

feel cold in your extremeties.

From: MommyToJase@...

Sent: Monday, March 22, 2010 9:45 PM

Subject: Re: temperature and CMT

Hi ,

Thank you for responding to my post. I believe the Principal thinks that CMT is

not a real disease and that I am trying to take advantage of the " system " . He

has most of the handicapped parking locked off no one can access all but two

spaces.

I really hate this school. I hope their butts get nailed to the wall as well.

In a message dated 3/22/2010 5:49:16 P.M. Pacific Daylight Time,

lalbrecht02@... writes:

Is this dope going to give your kids assistance only on cold days? Hot

days? Honestly! I hope your lawyer nails their butts to the wall!

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Thanks Chris

Its really hard.

In a message dated 3/23/2010 9:33:34 A.M. Pacific Daylight Time,

zchristinemcguire@... writes:

UGG!

Hang in there the high road pays off in the end & you are a great mom.

Sorry to hear about all of this.

Chris

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Thank you for responding. I love the finger analogy. I may need to

use it.

In a message dated 3/23/2010 11:21:14 A.M. Pacific Daylight Time,

dgbeckingham@... writes:

I agree with others...it is impossible to put an exact temperature on when

you feel cold in your extremeties.

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I believe it is because when my kids get left outside in the cold their hands

do not work. So now they want to know how cold is too cold and how hot is to hot

to be left outside. Our type of CMT reacts to the extreme temperatures.

In a message dated 3/23/2010 9:24:36 A.M. Pacific Daylight Time,

cdwheels3@... writes:

-

I'm confused! How did the principal connect the CMT disease to temperature in

the first place? Sounds like he/she is trying a delaying tactic or is hoping

that your request??? goes away!

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hello,

Im not dure what temperature that affects me maybe cold.I put heat on my ankle

and it helps me alot.I sprained my ankle last year and I have cmt 1 x and its

still not healed .I still have pain going to Physical therapy once a week.

>

> Our school Principal wants the doctor to write exactly at what temperature CMT

is effected. I can't believe how awful this school is being. So would anyone

like to tell me what temperature effects their CMT? I know for me it is

impossible to say what degree sets me off.

>

>

>

>

>

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  • 1 month later...
Guest guest

Anything under 50 degrees Fahrenheit.

On Mar 22, 2010, at 6:52 PM, MommyToJase@... wrote:

> The issue came up because my daughter has to wait for the outside

> elevators. They forget to let her up the elevator so she stands and waits and

waits. Her hands get so cold she can not use them. The doctor has written that

they need to avoid extreme weather. So now they wanna know what degree is

considered extreme. My daughter has a 504 plan. My son an IEP.

>

>

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Under 10C/50F and over 25C/77F

On Mar 23, 2010, at 4:47 PM, MommyToJase@... wrote:

> I believe it is because when my kids get left outside in the cold their hands

do not work. So now they want to know how cold is too cold and how hot is to hot

to be left outside. Our type of CMT reacts to the extreme temperatures.

>

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