Re: Digest Number 70

[Guest guest]

Barbara, regarding message 11 in today's digest, I don't think educating

attorneys will help improve much. Attorneys can't testify to anything.

The people you have to reach are the HVAC engineers, the doctors and the

legislatures. Most HVAC engineers design to ventilation standards based on

occupancy load and the state or federal standards. So many air changes per

hour and all that. Most states require that HVAC designs for public and

industrial buildings be certified by registered engineers....residential

building owners are on their own. Anyone can do HVAC design and

installation for residences in most states. Homeowners only have the codes

to protect them and after the drywall is up, the inspector can't see a

thing. So the place to go is the legislature to require licensing of all

HVAC installations, residential as well as commercial and to fund

instrumentation such as the PhotoVac Voyageur to health departments who that

can actually monitor specific pollutant levels when they receive complaints.

The doctors, well, they are paid if their diagnosis fits a code in the ICD-9

manual. They hate confrontation and cross examination by their lay

patients or, worse yet, attorneys. It is much easier to just make a

diagnosis and call it " idiopathic " meaning " unknown cause " , send the bill

and go on to the next patient. They don't get paid to find out what caused

anything. They get paid to treat. That's why you see very few of these

toxic cases being submitted to worker's compensation. The doctors have to

establish a workplace relationship and submit themselves to cross

examination to get paid from the worker's compensation insurer. It's much

easier to just ignore the cause and submit the claim to the health insurer.

So until that system is changed, you will see very little change in IAQ

unless a major catastrophe occurs such as in Bhopal, India back in 1984

which fostered EPA's rule 112r under the Clean Air Act.

----------

From: onelist[sMTP:onelist]

Sent: Friday, February 12, 1999 3:56 AM

onelist

Subject: [] Digest Number 70

To unsubscribe from this mailing list, or to change your

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select the User Center link from the menu bar on the left.

There are 11 messages in this issue.

Topics in today's digest:

1. Barbara Camwell Ness' Story

From: " Barbara Herskovitz " <bherk@...>

2. A sad and preventable story. (death of an infant due to

water contamination)(Editorial) 8-8-1998

From: " Barbara Herskovitz " <bherk@...>

3. Fungi and the indoor environment - Occupational Hazards

October 1, 1998

From: " Barbara Herskovitz " <bherk@...>

4. US HHS: NIEHS, CDC fund study of fungus fatal to Cleveland

infants - 7-31-1997

From: " Barbara Herskovitz " <bherk@...>

5. Indoor air quality investigation protocols. 10-01-1996

From: " Barbara Herskovitz " <bherk@...>

6. Influence of residential fungal contamination on peripheral

blood lymphocyte populations in children. 5-15-1998

From: " Barbara Herskovitz " <bherk@...>

7. Using UVC technology to enhance IAQ. (indoor air quality)

02-01-1996

From: " Barbara Herskovitz " <bherk@...>

8. " 13 Hospitalized After Odor Detected in Kensington Clinic. "

From: " Barbara Herskovitz " <bherk@...>

9. Parents say misapplied pesticides caused death of son

From: " Barbara Herskovitz " <bherk@...>

10. " Chemically Speaking "

From: " Barbara Herskovitz " <bherk@...>

11. Re: Resources for educating attorney (was: My Story)

From: Rkfabf@...

____________________________________________________________________________

___

____________________________________________________________________________

___

Message: 11

Date: Wed, 10 Feb 1999 22:24:17 EST

From: Rkfabf@...

Subject: Re: Resources for educating attorney (was: My Story)

Barbara -

Here's a couple of resources for info re: Indoor Air Quality that

might

provide your attorney with perhaps some useful information...

<A

HREF= " http://www.newscientist.com/ns/970621/features.html " >ARTICLE:

Chemical warfare in the office</A>

http://www.newscientist.com/ns/970621/features.html

<A HREF= " http://www.smartoffice.com/Healthy%20Office.html " >ARTICLE:

Creating

a Healthier Office by A.K. Townsend</A>

http://www.smartoffice.com/Healthy%20Office.html

<A HREF= " http://pubs.acs.org/hotartcl/est/98/nov/low.html " >ARTICLE:

Low-Level

Chemical Exposures:A Challenge for Science and Policy</A>

http://pubs.acs.org/hotartcl/est/98/nov/low.html

<A HREF= " http://www.njc.org/SAR95/Make95.html " >ARTICLE: HOME

MECHANICAL

VENTILATION, AND CHRONIC FATIGUE SYNDROME</A>

http://www.njc.org/SAR95/Make95.html

<A HREF= " http://www.niwl.se/WAIS/30113/30113456.htm " >Respirable

particles :

impact of airborne fine particulates on health </A>

http://www.niwl.se/WAIS/30113/30113456.htm

<A HREF= " http://www-members.adept.net/~mcsinfo/ " >MCS &

Environmental Illness

</A>

http://www-members.adept.net/~mcsinfo/

<A HREF= " http://www.arb.ca.gov/rd/apr/indoor.htm " >CARB - Indoor Air

Quality

</A>

http://www.arb.ca.gov/rd/apr/indoor.htm

<A HREF= " http://www.cdc.gov/niosh/indoorai.html " >Indoor Air Quality

Health

Hazard Evaluations</A>

http://www.cdc.gov/niosh/indoorai.html

<A HREF= " http://home.att.net/~martin.consulting/iaq.htm " >IAQ Manual

(courtesy

of Consulting)</A>

http://home.att.net/~martin.consulting/iaq.htm

<A HREF= " http://www.ei.jrc.it/eca-iaq/ " >INDOOR AIR QUALITY AND ITS

IMPACT ON

MAN</A>

http://www.ei.jrc.it/eca-iaq/

<A

HREF= " http://www.ci.nyc.ny.us/html/doh/html/epi/moldrpt1.html " >Mold

Assessment and Remediation - New York City Department of Health</A>

http://www.ci.nyc.ny.us/html/doh/html/epi/moldrpt1.html

<A HREF= " http://www.cdc.gov/niosh/ieqpage.html " >IAQ and Work

Environment

Symptoms Survey</A>

http://www.cdc.gov/niosh/ieqpage.html

<A

HREF= " http://www.osha-slc.gov/Preamble/Preamble_Images/ac6_f1.gif " >Preamble

- Air Contaminants - Section 6 - VI. Health Effects Discussion and

Det</A>

http://www.osha-slc.gov/Preamble/Preamble_Images/ac6_f1.gif

Here's a few legal resources for you...

<A HREF= " http://prairielaw.com/ " >Prairie Law - (legal empowerment

for

personal injury, medical malprac</A>

http://prairielaw.com/

<A HREF= " http://www.ashcraftandgerel.com/ " >The Personal Injury

Litigation

Forum, Ashcraft & Gerel</A>

http://www.ashcraftandgerel.com/

And the attachment which unfortunately will not transmit to the List

is

titled:

" Air Pollution Impact on Body Organs and Systems " ...I am

forwarding a copy

to the List moderator in the event she would like to make this

available to

other subscribers of the Sickbuilding List.

I hope this information is of some assistance.

Regards,

Flanders

IAQ List Manager & Moderator

Fax: 972-527-6608

rkfabf@...

<A HREF= " /subscribe.cgi/iaq " >IAQ Listserve (to

subscribe)</A>

/subscribe.cgi/iaq

<A HREF= " /archives.cgi/iaq " >IAQ Listserve (to

search

archives)</A>

/arcindex.cgi?listname=iaq

<A HREF= " http://www.fiscorp.net/iaq/ " >Candles and Indoor Air

Quality</A>

http://www.fiscorp.net/iaq/

<<nessworld@... wrote:

Any help, support or information I can

send to my W/C attorney would be helpful. We have been unable to

identify one factor that made us sick other than the soup of SBS. I

have no family and have been thru the social services system only to

be

denied because I am married and hubby works. We can barely afford to

live but I am determined to get what is fair for myself. as well as

a

clean work environment for everyone. My activism is currently on

hold

as all my energy goes into my children.

Thanks for listening

Barbara Camwell Ness

NYC

>>

____________________________________________________________________________

___

____________________________________________________________________________

___

[Guest guest]

In a message dated 4/15/99 12:44:12 AM Pacific Daylight Time,

onelist writes:

<< rom: Dana Carvalho <clayvon@...>

Subject: Re: Patty and Dana >>

Dear Dana--Way to go girl!! Sounds like you are doing just the right

thing--use that behavioral mod stuff that you do so well in the

pre-school--although it is always easier to use with someone else's child!

Try to use as few words as possible when instructing your child or getting

her to do something. Sometimes we parents can get so hung up on making sure

the kids know everything, that we fail to realize that they have stopped

listening a long time ago. I teach parents the " 10 second--10 word rule " --

if it can't be said in 10 seconds--you're saying too much! Kids will not sit

around for a lecture--both mentally and physically!

I also find (and this is for Kathy and Sheree) that we do not need to explain

" why " we need to do something--it's because we said so--and that is okay! I

trying to be helpful, we can often exacerbate the issue--especially with

young, impressionable children. Teens are older and can appreciate each

other's problems, and they can cope better than younger children with the

same amount of information. In other words--you could tell a teen about

germs, etc, when you don't wash your hands, and they can deal with it better.

This same talk with younger children may cause undue anxiety, worry, and can

lead to undo stress. It's just a good idea to wash your hands when you come

in from play and before you eat. Enough said.--

If the child is older,and you have problems getting them ready for

school, and even if the child is younger, for that matter, have them lay out

all that is necessary for the next day, the night before, so that no

decisions need to interfer with getting dressesd the next morning. You can

make a check list (words or pics) and have the child check each item off when

finished, moving his marker closer to the finish line on a agame board, with

the finish being the car and school. This way the child can see his

progress. My hat goes off to you parents--you're doing a great job-pat

yourself on the back and give yourself a great big hug--you deserve it!

Fondly,---Dr. Barbara Freedman

[Guest guest]

In a message dated 4/15/99 12:44:12 AM Pacific Daylight Time,

onelist writes:

<< > From: Roman <ChrisRoman@...>

> >>

Chris--try not to take away bedtime stories or rituals that you go through

just prior to bedtime. You want your child to go peacefully to sleep--start

early enough to get pj's on and teeth brushed and have your child pick out

the book ahead of time so that they can look forward to the payoff (a story

from parent) for getting ready. Take some deep breaths--remain calm, measure

your words--i.e., speak slowly and pace yourself so that you do not get

caught up in the rush and wind up yelling. Take an " isn't this interesting "

approach--that is--here it goes again--I wasn't surprised. Hope to meet you

at the conference.

--Dr.Barbara Freedman

[Guest guest]

In a message dated 4/15/99 12:44:12 AM Pacific Daylight Time,

onelist writes:

<< From: Roman <ChrisRoman@...>

Subject: Re: Patty and Dana >>

I definitely agree on trying to focus on the positive over the negative.

Sometimes children begin to think that there middle name is " No--ny No,

Susie No. " Pick and choose your battles--ask yourself how important is your

raised blood pressure, blood sugar, heart rate when you get angry--is this

problem worth it. A quote that I like is " That for every minute you are

angry, you lose 60 seconds of happiness. "

You might also try " chip trading " --using poker chips each time your child

responds to a request, etc. Make 3 columns: (l) things to be done where

can earn a chip--and you want your child to earn lots of chips--1 for each

thing done, i.e. brush teeth, pick up clothes, do homework, straighten bed,

wake up with a smile, be in car on time---you know your child and what you

want her or him to accomplish. Your child can lose chips for

noncompliance--more if it is really bad--i.e. talking back, hitting, etc (5

chips taken away). What to do with chips earned?

5 to ask a friend over--10 for sleep over--maybe 1 for dessert it you do not

give dessert during the week--time with mom, time with dad, time on Nintendo,

1/2 hour stay up later, play a board game with parent, go to park (may cost

child more chips--)tailor it to fit your child and what you want to

accomplish. It is tedious to remember to give chips, but your child will

probably remind you--which is great. You can always add a bonus of more

chips--1 or 2 for quick compliance. It does work. Hang in there--

Dr. Barbara

[Guest guest]

Thanks to all who shared behavior mod ideas. I will get busy changing mine

first to set the example. I think she'd really love the chip idea.

Yesterday was a tough day. I find I'm hopeful for long-term

recovery/management on good days and so discouraged on bad days. I try not

to compare day-to-day but it's hard. Her inability to focus on tasks has me

exhausted because things take forever to complete. (Maybe chips will help.)

She's always been a daydreamer, but this inability to focus really

magnifies with OCD and I don't understand why. She may have ADHD

tendencies, but was much more focused before OCD.

Yesterday I felt like I started our bedtime routine at 3 pm when she got

home from school (i.e. school homework, dinner, CBT homework, bath, PJs,

relaxation exercises, etc.). My whole goal was to get her to bed early so

this morning wouldn't be tough. Then she had a bad dream and was up at

night and tired today!

I guess I will have to learn how to abandon my tendency to control and

learn how to go with the flow more. You just can't " out-plan " OCD, can you?

My husband and I talked and decided that the most important things that

need to get done each day are the 20 minutes of quality time and CBT

homework. She needs downtime too so if that means all the schoolwork can't

get done right now, we'll just have to adjust until things are going better.

Thanks again to all who responded,

Chris

[Guest guest]

Please do not unsubsribe me from the support group. I only wanted to add on

the digest format also.

[Guest guest]

Hi Suzey B, and everyone else,

Why 2 years, because my first

doctor took me off the combo after 3 months, I came back RNA 0, he told me I

was in remission, should stay that way 2-5 years. He was a G.I. I got

retested 3 months later and my viral load doubled, my primary did some

research for me and found me a good hepotolist. It took me another 13 months

to get back down to 0. I am still as sick as I was when I first started

taking the combo, he is reducing my meds slowly. We are kind of doing a

little research on our own, always with my permission, the side effects are

so bad, he had to find a way to keep me on the meds, but not kill me at the

same time. I started at 3.5 and I am now down to .2. everytime he has reduced

me I would get an RNA and see if I was still at 0. This will be the last

reduction, will know in 2 weeks if I am still at 0. I still have about 7

months to go. The research also says, the longer on the meds. the better the

remission rate, hope they are right.

[Guest guest]

Hi Suzey B, and everyone else,

Why 2 years, because my first

doctor took me off the combo after 3 months, I came back RNA 0, he told me I

was in remission, should stay that way 2-5 years. He was a G.I. I got

retested 3 months later and my viral load doubled, my primary did some

research for me and found me a good hepotolist. It took me another 13 months

to get back down to 0. I am still as sick as I was when I first started

taking the combo, he is reducing my meds slowly. We are kind of doing a

little research on our own, always with my permission, the side effects are

so bad, he had to find a way to keep me on the meds, but not kill me at the

same time. I started at 3.5 and I am now down to .2. everytime he has reduced

me I would get an RNA and see if I was still at 0. This will be the last

reduction, will know in 2 weeks if I am still at 0. I still have about 7

months to go. The research also says, the longer on the meds. the better the

remission rate, hope they are right.

[Guest guest]

Hi Alleypat and everybody! Thanks for respnding.

4e is the Middle East version of Hep C.It could have happened by a

transfusion. I also spent a few years enjoying the mid-East. Not only

ex-hippies live in wild surmise!

Somebody else mentioned that she had a swelling of the lips after an

interferon injection. We girls have more than one set of lips, and that gave

me an " AHAW " moment. A libidinous surge is unmistakeable, even after a 10

year absence.

I sent one and all a list of the supps I take, and the fact that I REALLY

drink water. Many of those supps are supposed to make you feel MUCH better.

I don't dare quit anything.

I've been buying them thru vitaminshop.com, for a good price. Does anyone

know a better, cheaper?

Gratitude to you all, and especially Marty! K.K.

Digest Number 70

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[Guest guest]

Hi Alleypat and everybody! Thanks for respnding.

4e is the Middle East version of Hep C.It could have happened by a

transfusion. I also spent a few years enjoying the mid-East. Not only

ex-hippies live in wild surmise!

Somebody else mentioned that she had a swelling of the lips after an

interferon injection. We girls have more than one set of lips, and that gave

me an " AHAW " moment. A libidinous surge is unmistakeable, even after a 10

year absence.

I sent one and all a list of the supps I take, and the fact that I REALLY

drink water. Many of those supps are supposed to make you feel MUCH better.

I don't dare quit anything.

I've been buying them thru vitaminshop.com, for a good price. Does anyone

know a better, cheaper?

Gratitude to you all, and especially Marty! K.K.

Digest Number 70

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

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>1/936/0/_/619765/_/952865466/

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>

[Guest guest]

Hi alleypat, I forgot to respond to your other question.

The nurse practitioner said that whatever the result of my virus load test

next month, I will not get further treatment. do you think this is HMO graft

talking? K.K.

Digest Number 70

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

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>1/936/0/_/619765/_/952865466/

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[Guest guest]

Hi alleypat, I forgot to respond to your other question.

The nurse practitioner said that whatever the result of my virus load test

next month, I will not get further treatment. do you think this is HMO graft

talking? K.K.

Digest Number 70

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

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>1/936/0/_/619765/_/952865466/

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[Guest guest]

wow....had to download this digest and then it was in like Greek

letters........Joan, what is going on??? LOL......

[Guest guest]

In a message dated 9/8/2000 4:08:03 AM Eastern Daylight Time,

egroups writes:

Florida has never been inclusive. They have some of the least inclusive

classrooms in the US. I had many a parent from Florida tell me that when

they asked for an inclusive placement, they were laughed out of the IEP

meeting.

Elaine

>>

That happens everywhere! Florida was inclusive when was born there 22

yrs ago and started EI at 2wks when we came out of the hospital! They were

cutting edge then. Now, I have friends in Fl in two different areas whose

children have been included. From what I understand FL as a whole has really

fallen behind in sped, but it's not like that makes them different from any

other state!

Rejoice!

Amie

[Guest guest]

Nikki,

Maybe I can help and maybe my MD wife or some others can help. Our

daughter, Jan, had a BMT a year ago. We were down to " last chance " and

a lot of worries about whether another round of torture was reasonable,

but we decided that Jan would be willing to take a chance to stay

alive. I know that as of today, she would go for the transplant, no

matter how bad.

She'd been through three years of difficult times, first with pyroderma

gangranosam which is so rare it doesn't have a common name. It is

diagnosed only by ruling everything else out and in the process there

were some medical errors (all well intentioned) that left her with

amazing scars on her leg (about as good as mine). Then there was a

stroke, one siezure as she was going into therapy for the stroke, and

then AML. Still, she fought back and got physically active and into her

" independent as she can be " live that she wants and needs.

Well, the AML responded to the therapy really well and she got into

remission. She grew her hair back and was bridesmaid at her brother's

wedding wearing a smile that was bigger than that of the bride. The

following winter she and I skied for a week in Utah like nothing had

ever happened. We're very good skiers for the handicaps we each have

and do some expert runs and all the intermediate ones.

Then the AML came back. Only one year of remission and we'd hoped for

forever. So in August 2003 she underwent the " most miserable

experience " as we call it. Her brother was donor. THE NEWS IS THAT

WITH NEW T-CELL EXTRACTION, THE PROCEDURE FOR THE DONOR IS NOT LIFE

THREATENING. SIGN UP! JAN'S BROTHER NEVER GOT BEYOND TYLENOL FOR HIS

DISCOMFORT.

Now this is a very scary procedure. The odds of survival are awful,

except when compared to not doing it. It is like playing Russian

Roulette (twice). Still, it is successful more often than not!

Well, after the procedure and inital recovery (about a month in the

hospital and then some time in a neaby place .. Mac house

took her and her Mom in), she came home to our form of isolation since

her immune system was supposed to be less than an newborn. We did our

own form of isolation and used exercise as we could to bring her

strength back.

Her digestive system .. top to bottom .. was wiped out. Eating wasn't

fun or enjoyable. She did eat, but slowly was wasting away at about a

pound a week. Now at the beginning of this episode she'd been on her

own and gotten to about 170 on her 4 foot 8 body (read that obese). Now

she was going down through the '90's and we worried about whether it

would stop.

Finally around the first of 2004, things stabilized. She got her

appetite back and loved how slim she looked. She got into exercise

(call that parent abuse if you want) and by this summer she could hike

eight miles on a hot day or ride a dozen miles on a new bike.

She has had one rejection episode that put her in the hospital another

time and on prednisone which makes her diabetic. That is being cut

back, but she is now back in her apartment and living on her own and

managing her diabetes. Yes that's scary, but she's doing it.

In November I get her back to California for more hikes and bike rides

and someday soon we will all be together again, but she will still want

her own place and life.

Rick .. dad to 31 year old Jan

I'll be happy to help with your book if I can. As I know it, by the age

of 10, ALL is the most common form of leukemia. Yes my daughter got AML

at around 28 or 29 and her remission was short.

The early AML is more treatable in children with DS than those without.,

but there are still failures. I don't have a clue on remission

statistics for those who are treated young, but I'm hoping and praying

that their remission is simply " forever " .

One more caveat. I'm the dad who fixed an exercise bike so that, when

hooked up, my daughter got no sound from the TV without pedalling. I am

either a parent who believes in exercise as part of health or an abusive

parent .. make up your own mind.

r

wrote:

>I am under contract for a three book series. The publisher is

>Revel/Bethany House. My third book centers around an eight year old

>boy with DS who needs a bone marrow transplant. He has leukemia. I

>need to connect to someone that has been through the process of a

>bone marrow transplant and had a successful outcome. I am hoping you

>can direct me to information and/or resources. I have read several

>books on the subject but have questions regarding the accuracy of

>details in my story.

>

>For example: I understand that AML peeks between 3-5 years of age.

>Does that mean it would be unlikely an 8 year old boy would have it.

>Or could it have been in remission since he was 5 and come back,

>putting him in relapse?

>

>These are the kind of questions I have. If you think you can help,

>please e-mail me privately at nikkiarana@....

>

>

[Guest guest]

Just wanted to drop you a note and let you know I'm going to be gone most of Nov. researching my book. I'm not sure yet if the character will need a peripheral blood stem cell transplantation or a kidney transplant. I will know more when I get back.

I'll touch base with you sometime in December or January.

Thanks for your help.

Nikki AranaVisit www.nikkiarana.com*******Follow the Lord where He leads. His ways aremysterious and beautiful.