Re: Digest Number 633

[Guest guest]

Lynn,

I just have a second to reply to your question which is quite profound and I'm

sure will generate much important discussion and ideas. But my first thought is

this. The world is full of what if's, from stepping into the shower- we could

slip, to eating breakfast- we could choke or get food poisoning, in the car- an

accident and so on. All these are possibities that as parents we teach our kids

to be careful enough, but not burdened second

by second by these possibilities. So the information we relay as parents about

various risks- safe sex etc- is essential- we are the teachers. We can make

sure to present that information in an empowering way rather than out of a place

of fear. So in general taking a here are the facts, and here are the things

you can do to protect yourself stance is what we all strive for. The OCD part

is this. Information is good, but what OCD kids

brain's do what that information is not good. It doesn't sort well what's

important from what's not, or doesn't gauge well how much or often we need to

think about important things. Dr. Rausch at the Conference described how

in OCD it's like a secretary (the thalamus) keeps bothering the CEO (the caudate

nucleus) with unnecessary information. The information is unecessary either

because it's a minor detail (there's a mark on that

banana- don't eat it, your shoe laces aren't even- fix them), or because it's

been taken care of already (the door is locked, but maybe it's not- go check;

the match might not be out- dunk it in water). So when you give reasonable

warnings about things, the thoughts are still going to get stuck or amplified in

OCD. The key is helping your child sort out when the brain goes too far, and

then devaluing those extra unnecessary messages- I

call them OCD junk mail.

How do you decide a reasonable precaution? Lee Baer and others talk about asking

coaches- people you trust- for a gauge on what's a reasonable amount of worry,

and then teaching your brain to " act " as they do. If they check once and that's

enough, acting on that, etc. I did have a child with fears of paint fumes etc-

I wrote about him in Chapter 10 and 11 of my book. He couldn't use markers,

paint, cleaning chemicals, or be near his mom's

hairspray etc., once he understood OCD, he knew that he was being told bad

information by his brain to be more careful than anybody else. He did exposures

to these substances so that he could use them the way others do, the way it is

recommended on the bottle, rather than having to barricade himself in his room.

He felt in charge again, like he had permission to live like others, once he

understood how his brain was making a mistake with

this stuff, being permanently set on disaster mode. Following this, when OCD

warned him about stuff he could label it and devalue it's message as being

false.

So much for a short answer- got to run- best,

Tamar Chansky, Ph.D.

[Guest guest]

Gretchen, Ruth and others;

Ironing sitting down can be difficult but ironing

boards adjust in height and can be helpful; also I

have a portable ironing board that can be put in your

lap and sit in a nice comfy chair. My biggest problem

with ironing or using a curling iron, or a hair dryer

is holding the thing for very long and having a safe

grip on it!

An;

Welcome to the list! I am 43, mother of three and

grandmother of one. I have CMT1X. ( diagnosed at age

40 but had trouble my whole life; no one knew what the

symptoms were from)

My youngest daughter has hearing loss, and we

suspectedd it might have something to do with CMT, at

the time she hadn't been diagnosed but the specialist

couldn't find a reason for her loss other than

possibly if she did have nerve problems. ( we saw

other symptoms and suspected early before her first

year was complete she had similar problems that I had

as a young child) She has been recently diagnosed with

CMT1X.

My son age 9 yrs is in process of getting confirmation

also. My oldest daughter is having DNA test to see if

she is a carrier; she doesn't have symptoms (at age

22)but don't want to pass it on to any offspring when

she decides to have more children. (she has a 4 yr old

who will have to be checked if her mommy proves to be

a carrier)

FYI I had optic atrophy or (ptosis)from age 13 and

told it was " lazy eye " but found out it was due to CMT

too.

These things are not usual with CMT but in some cases

if certain nerves are affected it affects various

things.

Good luck; Libby

=====

" I THANK GOD FOR MY HANDICAPS, FOR, THROUGH THEM, I HAVE FOUND MYSELF, MY WORK,

AND MY GOD. " - Helen Keller

" TO MAKE A FRIEND TAKES BUT A MOMENT. . . TO BE A FRIEND TAKES A LIFETIME "

" FRIENDS ARE LIKE PILLARS; SOMETMES THEY LEAN ON YOU; SOMETIMES THEY HOLD YOU

UP! "

LIBBY'S HOMEPAGE www.geocities.com/charcot_marie_tooth

(^-*) (CM)LIBBY IN ARKANSAS

__________________________________________________

[Guest guest]

,

I agree with the intuition thing. is 10 now, but when he was around 6 or

7, when we were in Missouri, I had a habit of bringing him in to the doctor 2

days before the doctor would diagnose him sick (usually bronchitis or

pneumonia). Our pediatrician at the time finally just said, " Well, mom, you

know him best, we'll start treating him. " It was nice. I've done that with

, too, but not as much. With , my intuition is telling me that he's

going to end up celiac also. I really hope I'm wrong this time.....

Wife to Dewight

Mom to , 10 yrs, DS, PDD-NOS and celiac

and , 19 months and strong-willed

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[Guest guest]

Welcome to the group Des! Eating, weights and not overtraining on the

cardio will be your challenge it seems. Planning is the key to success!

All the best! Kit

What will I do with overtraing on the cardio? I started today and

followed the diet good, (easy I thing) and am getting ready to do the

weights, but I have already ran 3.2 miles today. I this to much?

Des

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[Guest guest]

Hi Dannilynn- , correct me if I'm wrong, Hyperlexia is not a

stand-alone diagnosois or it shouldn't be anyway. At the very least

it would be Hyperlexia with Autistic Tendencies. Labels, Labels,

Labels...Don't let it drive you crazy, I don't even care anymore, she

is who she is and I love her.

Deanna

> , hi this hyerlexia sounds like my three year old a lot of

echolalia,and

> she does like to count she has some social problems,but not as bad

as a lot

> of other autisic kids i've seen i would like to chech into this are

they

> diagnosing our children wrong or is this common with autisics?

[Guest guest]

' ' wrote:

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[Guest guest]

' ' wrote:

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[Guest guest]

Dear :

I am afraid, your sources are not good, Sanoviv. is

open and working with normality, we are the clinic

with more patients, as I mention to you, we are the

only clinic in Mexico who works with authorize

protocols of investigation. Most of the clinics in

T.J. were closed because they don't have the right

permisions to work with, some of them move to " other

houses that they rent " and somo others rent a builidng

as a hospital.

Sanoviv is " real " we have the best therapies and the

newest diagnosis thecniques.

Please don't heard envy people.

Your friend

Vazquez www.sanoviv.com

__________________________________________________

[Guest guest]

In a message dated 1/22/02 11:07:30 AM,

writes:

<<Anyway, it is looking as though it is a phenol problem again as

he had epsom salt baths, milk thistle etc and seems to be getting calmer by

the day. Still has his itchy spots though but I don't think they are so

angry. >>

[Guest guest]

I have porphyria cutanea tarda and I have to have phlebotomies (blood

removed)

to keep it under control. If my hemoglobin gets too high, I blister

from the sun. The blisters are horrible and they scar. During the

summer I have to avoid the sun.

just call me vampire ..LOL

hugs,

Judy M

Love and compassion are the moral fabric of world peace. --The Dalai

Lama

~*~*~*~*~*~*~*~*~*@¿@*~*~*~*~*~*~*~*~*~

[Guest guest]

When my daughter had her first slings, fascia was the only thing

available when she was 5y/o (in 1988). When she had a revision in

2001, gortex slings were the new material on the scene (wouldn't

stretch). I think there will always be new materials/techniques coming

about. I understood that as she ages (as we all do) things will stretch

and may need revision if she feels she needs it. Our dilema seems to be

that the " corner " repairs never seem to stay " up " and theres a gap at

her lower lid which causes irritation & tearing.

This group is wonderful, wish it had existed back in '83!

Cheryl, Iowa City, USA

Re: uneven eyes after surgery

Nina,

I noticed the same thing with Josh's eyes. He had his sling surgery 3

1/2 weeks ago and the swelling seems to be gone. His right eye is open

more than the left. It isn't a huge difference, but noticable to me.

His eyes aren't open as much as I expected they would be either. Still

kind of squinty, but I haven't had anyone question me if he is Asian

since the surgery.

Annette

--

https://home.comcast.net/~agarrett0

0/

-------------- Original message --------------

Hi everyone,

Is there a great risk of the eyes becomeing uneven after sling surgery?

i know

it has only been 4 full days after surgery but 's right eye is

noticeably

higher than her left. It is more swollen but it seems lifted tighter

than the other.

Nina