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Hi Candace:

Your son definitely sounds like he's high functioning autistic to me or

Asberger, depending on who's doing the evaluation. All the symptoms you

wrote about sound like classic autistic spectrum of one sort or another.

Do you have a Children's Hospital in your area? The one where I live has

a pediatric developmental section where I got my older son's evaluation.

If you haven't tried the diet yet with your son, I highly recommend you

try it with him and see if he responds - I would do this even without a

diagnosis of ASD and then you probably wean your son off the medications

he's taking.

Good luck with this.

( & Malachi's mom)

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  • 4 weeks later...

At 10:37 AM 8/20/01 EDT, you wrote:

You mention Epsom salt baths....can you tell me more about that, and how it

helps.

thanks

sue

>My son got ahold of some Veggie Stix (the ones you find at Trader Joe's) on

>Saturday night before I realized they had wheat starch in them. Last time we

>had a gluten infraction, he stopped communicating (speaking/signing/eye

>contact/ect) for 10 days starting about 4 hrs after the incident.. So I

>totally expected a bad time this time, he was chowing them hand over fist at

>the party! But here I am, almost 2 days later, and nothing.. He's still

>signing, babbling, talking.. eye contact is good.. We've had a couple bad

>diapers and few tantrums (actually throwing himself on the floor and

>screaming/crying) that I *might* attribute to the infraction, but nothing

>like what happened last time.

>

>Now, in the time between the first time and this time, he's started TMG and

>SNT and epsom salt baths.. does anyone think think that his reaction was

>lessened this time because of the supplements, or should I be waiting for the

>other shoe to fall?

>

>Married to Dan

>Mom to:

>Dana (3/4/98)

>36 week preemie, now a spirited 3 y/o

>~~~~~and~~~~~~

> (3/26/99)

>33 week preemie, now a 2 y.o. growing boy!

>mild-moderate autism/hearing impaired

>~~~~~~~~~~~~~~~~~

><A

HREF= " http://www.butcherfamily.freeservers.com " >http://www.butcherfamily.fre

eservers.com</A>

>

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  • 2 weeks later...

At 10:44 AM -0400 9/6/01, bpayne1013@... wrote:

>...

>One concern I have is all this talk about *potent* gas,

>uncontrollable bms and frequent bms. Is it just luck of the draw

It seems to be the luck of the draw. However, there are things that

you can do to mitigate, if not negate, the curse.

>or has anyone been able to establish a relationship between any

>pre-op variables? I teach freshmen in college and it would be VERY

>difficult to go running out of class or have all the students go

>running out of class if I dropped a smelly bomb!

Lock the doors and get them used to life in the fast lane. Or, leave

the door open, but give bonus credit toward the final for those who

can stay. (^_^)

>

>I'm hoping to have surgery early in December and be back in the

>classroom mid-January. Again, my biggest fear is the unknown effect

>on the bowels.

Sorry, Bev, I do not want to make light of your fears, but, really

what's at stake here is your future health and quality of life. You

have to decide what's most important for you. Maybe, even a career

change--but why not wait and see. You could come through this

literally smelling like a rose.

>

>Any advice?

Does the word " sabbatical " ring a bell? --Steve

--

Steve Goldstein, age 61

Lap BPD/DS on May 2, 2001

Dr. Elariny, INOVA Fairfax Hospital, Virginia

Starting (05/02/01) BMI = 51

BMI on 09/04 = 41

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Hi Bev.......

if you make sure you dont overdo the fats, you should have no problem with

the gas nor the sudden urge to leave for the restroom!

Its really no problem for me unless I have eaten something like 2 choc

donuts that I normally dont eat. But the urge is not sudden.....its gradual

and you have plenty of time to get there.

Being a teacher, I would suggest you hold off on fats until you know how

your body handles them and eat those only when you dont have to be in class.

Usually, most of us have our " movement " in the morning and that is all that

happens for the entire day. Pretty much predicable!

Judie

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  • 7 years later...

Has anyone done or know about Colon Cleanser? Does it work and is it worth it? I have been thinking about trying it. I have heard it really helps you to feel better. Anyone Know????

Jackie

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I tried it , but it made no difference to me except help with my constipation. It did hurt intenstinal area, but I have had issues with my intestinal system and stomach . But you know everybody is different and may have a different experience, I'd be interested in the same . If anyone else has tried it and their experience.

What a conversation lol

Debbie T

Co-moderator

Subject: QuestionTo: Neurosarcoidosis Date: Tuesday, January 13, 2009, 11:42 PM

Has anyone done or know about Colon Cleanser? Does it work and is it worth it? I have been thinking about trying it. I have heard it really helps you to feel better. Anyone Know????

Jackie

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Getting old is when you walk along shooting rabbits without any control, or sometimes not even knowing it! I remember as kids, we would snicker at the old uncles walking along tootin' up a storm, and now I'm doing it! Even worse, because of my poor hearing, I often think it's an SBD (silent but deadly) until one of my grandkids starts making a face & fanning the air. Embarrassing. Rootin' Tootin' Rosie

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Wed, 14 Jan 2009 10:06:11 -0600Subject: Re: Question

We must be getting old we are talking about bowel and bladder. LOL That is what happens I am told.

Jackie

QuestionTo: Neurosarcoidosis Date: Tuesday, January 13, 2009, 11:42 PM

Has anyone done or know about Colon Cleanser? Does it work and is it worth it? I have been thinking about trying it. I have heard it really helps you to feel better. Anyone Know????

Jackie

Windows Live™ Hotmail®: Chat. Store. Share. Do more with mail. See how it works.

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  • 9 months later...

Mitch,much pain comes with the sarcoid arthritis.I've had fluid drawn off my knees,got cordisone shots and gotten pain shots from my primary doctor when the pain get in a none stop mode.my ankles get dark .my feet and ankle swell.both risk and bones inth hand s hurt.i have had flare ups that invovled my hip to my foot. be blessed. To: Neurosarcoidosis Sent: Thu, October 29, 2009 8:06:32 PMSubject: Question

First let me thank all of you for your welcomes and kind words. I 'm glad to be here (but wish i didn't have to be) I'm sure you all know what I mean. I wish none of us had to be here.

I have a question, I've over the last few month been having increasing pain in my knees, ankles, wrists, hands etc. The MRI showed arthritis but my Pulmonologist said Sarcoid Arthritis doesn't hurt at all?? I'm reading about people having similar problems. I'm now extremely confused. Is he wrong and It's just an amazing coincidence that all this Arthritis is happening 3 years after the official diagnosis of my Sarcoid (even though I've had it for 8-9 years ) or do other's have pain from Sarcoid Arthritis and my Pulmonologist is wrong.

advice please

Mitch

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I have arthritis in both knees. I get a series of Synvis shots about every six months. Three in each knee. It really helps epically if I intend to walk more. And I do intend to walk more.

Ask you doc about them.

Jackie

Question

First let me thank all of you for your welcomes and kind words. I 'm glad to be here (but wish i didn't have to be) I'm sure you all know what I mean. I wish none of us had to be here.I have a question, I've over the last few month been having increasing pain in my knees, ankles, wrists, hands etc. The MRI showed arthritis but my Pulmonologist said Sarcoid Arthritis doesn't hurt at all?? I'm reading about people having similar problems. I'm now extremely confused. Is he wrong and It's just an amazing coincidence that all this Arthritis is happening 3 years after the official diagnosis of my Sarcoid (even though I've had it for 8-9 years ) or do other's have pain from Sarcoid Arthritis and my Pulmonologist is wrong. advice pleaseMitch

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  • 5 weeks later...

Hi Gale!

O2 sat levels of 95 is GOOD, especially when moving around. Anything that drops below 90 is not good and requires oxygen. My sats go down when I exert myself. C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Sat, November 28, 2009 3:26:27 PMSubject: Question

All,

I began recording my sats about a month ago. I thought I would find when I wasn't feeling well my stats would be down, but not necessarily so. Today I had a bad day, didn't feel well and was moving around like I was 100 and my sats were 95. Can anyone enlighten me?

MARKETPLACE

Going Green: Your Yahoo! Groups resource for green living

Parenting Zone: Find useful resources for a happy, healthy family and home

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

hought.

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Gale

There are many more things that affect how you feel that just your

oxygen saturation levels. I'm sure before the disease you had some days

you felt better than others. Sometimes its even delayed. Remember the

great vacation when you were so active and running all week and then got

home and felt completely exhausted and drained two days later? We even

have many different reasons for shortness of breath. Thats all why an

oximeter is so valuable.

>

> All,

> I began recording my sats about a month ago. I thought I

would find when I wasn't feeling well my stats would be down, but not

necessarily so. Today I had a bad day, didn't feel well and was

moving around like I was 100 and my sats were 95. Can anyone

enlighten me?Â

> MARKETPLACE

> Going Green: Your Yahoo! Groups resource for green living

>

> ________________________________

>

> Parenting Zone: Find useful resources for a happy, healthy family and

home

>

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms

of Use

> Â hought.

>

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