article

[Guest guest]

I have a recent article that I submitted to The Internist (formerly the

journal of the council of the ACA council on diagnosis and internal

disorders). If anyone is interested I will post it here as an attachment. It

is a case history regarding cancer and nutrition. It will be attached as a

..wps file.

Anglen AZ DC

[Guest guest]

Dear ,

I don't think that it is 'usual' journalistic practice to get a response to

an article in the same issue. I think that it would be a good idea if we

could see the response before it went to press. If we are trying not to be

confrontational we would be able to assess the effect of the response.

However, we are not the ones being confrontational so maybe it is not that

important. The article should go ahead anyway. If they respond in a

confrontational way and adopt a defensive position then they are showing

themselves not to be interested in the future of health visiting but on

maintaining a position. I wonder what 'not too confrontational' means?

With confrontation you either do it or not don't you?

Article

> Hi!

> I wrote about this on an email within the site but it didn't seem to get

> circulated round so here goes again. The Community Practitioner were in

> touch to tell me that the article would go ahead in August but it would

have

> (in the same journal) a response from the CPHVA. I queried this as I

thought

> in order to have a response the first article had to be published and read

> and then responded to in future journals. I was told the response wasn't

> going to be 'Too confrontational' I again reiterated that we did not seek

> conflict over this and I would be upset as an author if my article was

some

> how set up to create conflict. I had a reply over this to the effect that

it

> was usual journalistic practice. I just wanted to let people know and

> wondered what they think!

> Houston

> ________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

>

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

> LOW RATE, NO WAIT!

> Get a NextCard Visa, in 30 seconds! Get rates

> as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees.

> 1/6632/14/_/_/_/963465429/

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

>

>

[Guest guest]

I agree - confrontation is or is not - and when I have sent a

contentious letter in the past Nick Robin has let me have a sight of the

reply before going to press.

In message <005801bfed10$78c50260$fc149fd4@computer>, Bidmead

<christine@...> writes

>Dear ,

>I don't think that it is 'usual' journalistic practice to get a response to

>an article in the same issue. I think that it would be a good idea if we

>could see the response before it went to press. If we are trying not to be

>confrontational we would be able to assess the effect of the response.

>However, we are not the ones being confrontational so maybe it is not that

>important. The article should go ahead anyway. If they respond in a

>confrontational way and adopt a defensive position then they are showing

>themselves not to be interested in the future of health visiting but on

>maintaining a position. I wonder what 'not too confrontational' means?

>With confrontation you either do it or not don't you?

> Article

>

>

>> Hi!

>> I wrote about this on an email within the site but it didn't seem to get

>> circulated round so here goes again. The Community Practitioner were in

>> touch to tell me that the article would go ahead in August but it would

>have

>> (in the same journal) a response from the CPHVA. I queried this as I

>thought

>> in order to have a response the first article had to be published and read

>> and then responded to in future journals. I was told the response wasn't

>> going to be 'Too confrontational' I again reiterated that we did not seek

>> conflict over this and I would be upset as an author if my article was

>some

>> how set up to create conflict. I had a reply over this to the effect that

>it

>> was usual journalistic practice. I just wanted to let people know and

>> wondered what they think!

>> Houston

>> ________________________________________________________________________

>> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>>

>>

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

>> LOW RATE, NO WAIT!

>> Get a NextCard Visa, in 30 seconds! Get rates

>> as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees.

>> 1/6632/14/_/_/_/963465429/

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

>>

>>

[Guest guest]

I agree, I don't think that it is 'correct' to have a reply to an

article in the same edition, however, if that is the way they are going

to do it, I athink that the process should be 2-way. ie we see their

response. I know that some mosgivings were mooted when I told the SW

Regional Exec re the group.

On Thu, 13 Jul 2000 22:20:13 +0100 Bidmead <christine@...>

wrote:

> Dear ,

> I don't think that it is 'usual' journalistic practice to get a

> response to an article in the same issue. I think that it would be a

> good idea if we could see the response before it went to press. If we

> are trying not to be confrontational we would be able to assess the

> effect of the response. However, we are not the ones being

> confrontational so maybe it is not that important. The article should

> go ahead anyway. If they respond in a confrontational way and adopt a

> defensive position then they are showing themselves not to be

> interested in the future of health visiting but on maintaining a

> position. I wonder what 'not too confrontational' means? With

> confrontation you either do it or not don't you? Article

>

>

> > Hi!

> > I wrote about this on an email within the site but it didn't seem to

> get > circulated round so here goes again. The Community Practitioner

> were in > touch to tell me that the article would go ahead in August

> but it would have

> > (in the same journal) a response from the CPHVA. I queried this as

> I thought

> > in order to have a response the first article had to be published and

> read > and then responded to in future journals. I was told the

> response wasn't > going to be 'Too confrontational' I again reiterated

> that we did not seek > conflict over this and I would be upset as an

> author if my article was some

> > how set up to create conflict. I had a reply over this to the effect

> that it

> > was usual journalistic practice. I just wanted to let people know

> and > wondered what they think!

> > Houston >

> ________________________________________________________________________

> > Get Your Private, Free E-mail from MSN Hotmail at

> http://www.hotmail.com >

> > >

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

> > LOW RATE, NO WAIT!

> > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro

> or 9.9% Fixed APR and no hidden fees. >

> 1/6632/14/_/_/_/963465429/ >

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

> >

> >

[Guest guest]

In a message dated 8/4/00 10:21:54 PM Pacific Daylight Time,

will.obey@... writes:

<< CK,

Could you please tell me how to get the article. Of course I want to

read it, even if I do get depressed.

Lesa >>

what article? I am a sponge right now and would love to read anything!

thank you,

Lupi

[Guest guest]

I would definitely be nuts if I had to follow around all day, either doing

school or stopping the stims. Either that, or they would be hauling me off to

jail for murder. (Thank God I don't have to!) I have my alone time when I do

what I want, so I give his alone time. I even use string as a reward

sometimes.

Loriann

[Guest guest]

Hi Kay - Rudy calls " Sister " because he has a hard time saying her

name. My kids are half Mexican and Rudy does speak alot of Spanish, mainly

because some words are easier. Unfortunately, what he calls when he

tries to say her name is " caca " which is a no no in Spanish. It means s--t.

He says " pan " for bread, " pata " for foot/feet, " aqua " (sp?) for water

for a small example. He also understands in Spanish and English since he has

been around Spanish speakers since birth. Their dad and I have been apart

since they were little but I also speak fluent Spanish and try to keep it

going since it is part of their heritage. I think it has been good for him.

mom to Rudy (ds) & 13 & TJ 17

[Guest guest]

Kay:

My friends, with 8-week-old (DS), are moving here (to Stafford, VA)

in mid-November. Can you point us in the right direction, looking for

info/resources/etc., on DS in the area? We're a little closer to

Fredericksburg than Fairfax or Arlington. (However, having grown up in

Centreville some 20 years ago, I'm assuming the services may be a little

more sophisticated up there.) But they are willing to go anywhere to get

the best care and info as they learn to understand and work with .

Torry

Article

>

> Welcome Dean! How old are the boys? My triplets are 19 mos. and doing

great.

>

>

> I've attached a link to a local article recently published on Down

syndrome.

> It's good, but they forgot to define PODS (Parents of children with Down

> syndrome).

>

> just started calling , Annie. I think its intentional, but

very

> cute. That can be his sisterly name for her. imitates about

> everything and tries to repeat after you. He is signing " more " all the

time.

> It's so cute and he does it perfect. He sometimes says " mas " because our

> part time nanny speaks both Spanish and English. I hope will pick up

on

> Spanish as well some day. Maybe she will be the first international

> interpreter with Down syndrome knowing Spanish and sign language!

>

> Kay Tiernan, Mom to , , -ds, 19 mos.

> Arlington, VA

>

>

http://cold.jrnl.com/cfdocs/new/ffx/story.cfm?paper=ffx & section=he & snumber=0

> 1

>

>

>

> http://DSyndrome.com/Multiples

>

[Guest guest]

No amnio here. Just ultras but only two of those and no reason to suspect

anything.

[Guest guest]

Judi,

I did have amnio--a routine procedure done by my Dr. because of my age.

However, if I would have had all the information I have now about amnio, I

don't think I would have had it--I actually had amnio with our first-born,

Lucas, who is 10, as well, again, not due to any markers from ultrasound.

Marcia

Mom to Sara (DS) and 6 and Lucas 10

[Guest guest]

They didnt have the AFP when I was pregnant but from everything I have heard

I hate it. I have had so many people I know personally that were told that

they had a " positive " for one thing or another and then they agonized thru

their pregnancy only to have a perfectly normal birth and child with no

problems. Another thing I dont understand is that if the only way you can

determine officially a syndrome is by a genetics test on the baby how can

they tell someone is having a ds baby with a simple blood test? Do you know

Gail?

[Guest guest]

Judi

I chose not to have amnio, they did find a cystic hygroma on Dan at 13 wks.

A choroid Plexus cyst in his brain on another amnio, coarctation of the

aorta on another. The coarctation was seen at 17 weeks, at 24 it resolved.

I am glad i did not have amnio, because when they break my water i go into

killer labor instantly. Too afraid if the sac was punctured some

undiscovered hormone would send me into labor. Remember, they still do not

know what causes women to go into real labor!

I was happy with my choice.

ps. i did not even read the article...

jean

bren and dan's mom

[Guest guest]

Hi Judi and all........

I'm an x-ray technologist, so when I was pregnant with my twins more

than 2 yrs ago, like my other two pregnancies, I ellected not to have an

amniocentesis. I have seen some go wrong with terriblr results, it was

too real for me. PLus getting me pregnant was not an easy thing to

accomplish{with all 4 of my children} so, another reason, not to take

that risk, I couldn't just go ahead and " get " pregnant again, IF

something was to happen...........that being said, Tara, in utero, also

did not have any of the ultrasound markers of Ds, but we didn't have a

level 11 ultrasound. A level 11 ultrasound by an experienced tech, with

a high-risk OB, might have better results in looking for abnormalities..

I also didn't have an AFP drawn, since I was not having an amnio, no

sense doing an AFP, if the AFP was off{and usually is in multiple

pregnancies}drs would strongly suggest the amnio procedure.

My girlfriend who is younger than me had the AFP, during her pregnancy,

which came back within normal limits, although she was pregnant with her

daughter who was born with Ds.........so she didn't have an amnio either

based on her " normal AFP " , there was no indication to have an amnio.

Gail.........Bobby 7, Jillian 4 1/2, and Tara{Ds} 23 months!

[Guest guest]

I too had numerous ultrasounds. Not once did the doctor mention any

concern. No amnio was ever done or discussed as maybe being

necessary. Amber's DS was diagnosed, supposedly, at birth. However,

I wonder if they suspected something, because I did about two weeks

before the twins were born. Baby " B " (Amber) was not moving much and

this concerned me. Apparently, Baby " A " () was pushing poor

Amber to the side and with her low muscle tone she was unable to

fight back. Still after a 4 hour stay and eval in the hospital,

nothing was stated as being significantly wrong. I will wonder

forever how much my doc knew. He said he did not know but he did not

say he did not suspect. Hmmm... all those ultrasounds and what did

they tell me? Nothing significant in my opinion.

Jackie

Mom to Liz(14), Leanne(3) and and Amber(DS)(14 mos)

> Interesting article in today's newspaper:

>

> http://www.dallasnews.com/national/298301_downs_28nat.AR.html

>

> I know I had several ultrasounds after it was

> discovered that I was carrying twins. Apparently none

> of the *markers* mentioned in the article showed up in

> any of them.

>

> How many of you out there had amnio because of

> something that showed up in an ultrasound?

>

> Judi-Mom to Sam & , 4, Identical Twins

>

> __________________________________________________

>

[Guest guest]

lesfevr21@... wrote:

>

> They didnt have the AFP when I was pregnant but from everything I have heard

> I hate it. I have had so many people I know personally that were told that

> they had a " positive " for one thing or another and then they agonized thru

> their pregnancy only to have a perfectly normal birth and child with no

> problems. Another thing I dont understand is that if the only way you can

> determine officially a syndrome is by a genetics test on the baby how can

> they tell someone is having a ds baby with a simple blood test? Do you know

> Gail?

>

> Hi , the blood test I was refering to is called AFP {alfa feta protein}

it detects the protein of the liver of the fetus. This blood test is not an

" absolute " test. It is used as a screening, for possible proplems of the baby,

for example, if the results of a womens AFP comes back high it could " indicate "

Down syndrome, or if the results come back low, it could indicate spina bifida.

It is only a screening process, its not an absolute, just like an ultrasound,

but all these pieces of info together might paint a better picture for a Mom and

her baby.

Gail

[Guest guest]

Thanks Gail for the info on the AFP. Prior to moving to Amarillo, I lived

down at the bottom of Texas in a fairly rural area, very close to Mexico

(about 15 minutes). As far as I know, none of my friends were ever offered

an amnio and told that " for sure " their babies had whichever condition.

Thats why I have such a problem with it. Of course being an advocate that

thinks you get what you get and are happy with it may have something to do

with it!! lol

[Guest guest]

Thanks June. It scared me just wrting it after Andy s had gone

through the various scenarios to give his legal opinion about who would or

would not be held to account in certain cases. Shame the title was changed

to hide the fact that it is about 'accountability', duty of care stuff

relevant to the kinds of changes Gill and Ruth are writing about.

Another excellent paper was the one by Sue Normandale.

junet579@... wrote:

> , congratulations on your excellent and pertinent article in this

> month's Community Practitioner. June

>

>

>

[Guest guest]

I also enjoyed your article . The Normandale paper is

interesting but makes policy recommendations (reviewing HV education)

on the basis of data from 12 clients. Not a robust evidence base.

From: Cowley <sarah@...>

Date: Wed, 04 Apr 2001 07:16:51 +0100

Reply-to:

Subject: Re: Article

Thanks June. It scared me just wrting it after Andy s had gone

through the various scenarios to give his legal opinion about who would or

would not be held to account in certain cases. Shame the title was changed

to hide the fact that it is about 'accountability', duty of care stuff

relevant to the kinds of changes Gill and Ruth are writing about.

Another excellent paper was the one by Sue Normandale.

junet579@... wrote:

> , congratulations on your excellent and pertinent article in this

> month's Community Practitioner. June

>

>

>

[Guest guest]

Yes , I'm delighted to see it finally in print.

Maggie Ioannou

Article

> , congratulations on your excellent and pertinent article in this

> month's Community Practitioner. June

>

>

>

[Guest guest]

Judi,

You are a news junkie too, aren't ya??? I'm addicted to the news... often

read it in Hebrew and English! LOL

I saw this story on CNN. The scary part is that in 10 years the mother is

expected to not be able to care for or recognize her daughter do to her

gene for early onset Alzheimer's! Whenever I see studies like these I have

mixed emotions... mostly because there is a link that is not fully

understood yet between Down syndrome and Alzheimer's. We are pretty sure

that the gene for Alzheimer's is on the 21st chromsome, the gene on the

21st mostly associated with Alzheimer's is Superoxide Dismutase (SOD1). I

always wonder... when we solve the Alzheimer's issue... what next???

Alzheimer's is a terrible disease that needs to be cured (I'd even venture

to say eliminated), no doubt... but what research relating to DS will it

lead to, if any?

I didn't see the movie Gattica. Hmmmm....

Cheers!

Sara

--On Thursday, February 28, 2002, 10:52 AM -0800 Judi Grossman

<judig2@...> wrote:

> Anybody see the movie " Gattica " ? That's what I

> thought of after reading this article.

>

> While not DS related, this article poses some

> interesting questions about genetics and the future.

>

> Makes you wonder what's next that they can

> " selectively " screen for.

>

> http://story.news./news?tmpl=story & cid=585 & u=/nm/20020226/sc_nm/

> health_genetics_dc_1

>

>

> Judi-Mom to Sam & , 5, Identical Twins

>>

>>

>> __________________________________________________

>>

[Guest guest]

LOL Sara - I knew you'd understand all of the medical

stuff!! I too was concerned that they chose to have a

child who may be parentless in 10 years! I'm not sure

that " carrying on the family name " w/o the alzheimer's

influence is reason enough for tampering w/stuff like

this. Mixed feelings.

The movie Gattica (starred Uma Thurman, Jude Law,

Ethan Hawke and someone else whose name escapes me at

the moment), was set in the future. It was all about

how they had made advances to " genetically engineer "

the perfect child (there's a lot more to the story but

too long to go into here). It's a pretty good movie.

Like I said, when I read stuff I think about that

movie and how we seem to be moving closer to that

being an actuality, not science fiction.

Judi

--- Sara Greenberg <List@...> wrote:

>

> Judi,

>

> You are a news junkie too, aren't ya??? I'm addicted

> to the news... often

> read it in Hebrew and English! LOL

>

> I saw this story on CNN. The scary part is that in

> 10 years the mother is

> expected to not be able to care for or recognize her

> daughter do to her

> gene for early onset Alzheimer's! Whenever I see

> studies like these I have

> mixed emotions... mostly because there is a link

> that is not fully

> understood yet between Down syndrome and

> Alzheimer's. We are pretty sure

> that the gene for Alzheimer's is on the 21st

> chromsome, the gene on the

> 21st mostly associated with Alzheimer's is

> Superoxide Dismutase (SOD1). I

> always wonder... when we solve the Alzheimer's

> issue... what next???

> Alzheimer's is a terrible disease that needs to be

> cured (I'd even venture

> to say eliminated), no doubt... but what research

> relating to DS will it

> lead to, if any?

>

> I didn't see the movie Gattica. Hmmmm....

>

> Cheers!

> Sara

>

> --On Thursday, February 28, 2002, 10:52 AM -0800

> Judi Grossman

> <judig2@...> wrote:

>

> > Anybody see the movie " Gattica " ? That's what I

> > thought of after reading this article.

> >

> > While not DS related, this article poses some

> > interesting questions about genetics and the

> future.

> >

> > Makes you wonder what's next that they can

> > " selectively " screen for.

> >

> >

>

http://story.news./news?tmpl=story & cid=585 & u=/nm/20020226/sc_nm/

> > health_genetics_dc_1

> >

> >

> > Judi-Mom to Sam & , 5, Identical Twins

> >>

> >>

> >>

> __________________________________________________

> >>

[Guest guest]

> I too was concerned that they chose to have a

> child who may be parentless in 10 years!

Well, the child's father isn't a carrier. So she will have her father. But

still... sad.

I need to rent that movie.

Cheers!

Sara

[Guest guest]

Sharon...you just don't know how bad I wanted to drive over to Mobile (for

those of you who don't know.....I only live 20 minutes away) and take care of

these two women myself! That poor child! I have been furious ever since I

read this article in the paper this morning. I am so very glad that they

caught them on camera.

Terry Curtis (Fairhope, AL)

Mom to Evan, 6, DS (who just graduated from Kindergarten)

and Kohl, 5 months, NDA

------------------------------------------

The following link is to an article in my home town paper. The school they

mention has a good reputation for their education, and their school-to-work

programs. The school system also does inclusion in the general schools,

was included in our neighborhood school when we lived there.

Anyway, it sounds like these women are going to get what they deserve.

www.al.com/news/mobileregister/index.ssf?/xml/story.ssf/html_standard.xsl?/bas

e/news/10207630191664645.xml

Sharon

Mom to (10, DS) and (6)

South Carolina

[Guest guest]

Terry

I am with you. Hey, it's only a short 12 hour drive for me now.

However it does sound like the right things are being done. The follow

through from the initial complaint, etc.. This is the kind of stuff that

just scares me. The man quoted in the article was so right, the kids on the

bus can't stand up for themselves. I hope the felony charges stick.

Sharon

Re: article

> Sharon...you just don't know how bad I wanted to drive over to Mobile (for

> those of you who don't know.....I only live 20 minutes away) and take care

of

> these two women myself! That poor child! I have been furious ever since

I

> read this article in the paper this morning. I am so very glad that they

> caught them on camera.

>

> Terry Curtis (Fairhope, AL)

> Mom to Evan, 6, DS (who just graduated from Kindergarten)

> and Kohl, 5 months, NDA

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

> The following link is to an article in my home town paper. The school

they

> mention has a good reputation for their education, and their

school-to-work

> programs. The school system also does inclusion in the general schools,

> was included in our neighborhood school when we lived there.

> Anyway, it sounds like these women are going to get what they deserve.

>

>

www.al.com/news/mobileregister/index.ssf?/xml/story.ssf/html_standard.xsl?/b

as

>

> e/news/10207630191664645.xml

>

>

> Sharon

> Mom to (10, DS) and (6)

> South Carolina

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

[Guest guest]

Bev, Penny & Senate members

I've been puzzled for a long time about the electronic needs assessment tool and it was 's article that helped clarify the issue.

When I worked as a HNA Co-ordinator I had carried out several different types of needs assessment and used different methods depending on the different groups and expected outcomes of the assessment. It is this methodological issue that I am particularily puzzled about.

Most of the NA I have carried out and those published, have been studies to identify needs and plan and develop services in response. As such they have therefore been scoping exercises collating information collected within the same time frame, probably invalid after a period of time but providing a very useful snapshot, a bit like the census.

However, the HNA tool seems to collect information over differing times for different families. So, one family that may have had recent health visiting input would have their information current and another family that may not have been seen for sometime could have changed information that may not be logged. Out of my current caseload I am probably seeing only about 20 - 30 families that i know I hold accurate current information, therefore for the majority of the families in our area the information may well be invalid.

In essence, it seems to me that the HNA tool records an assessment process. If it is is used to collate information to identify community needs which is a snapshot, then my question is, can a process tool be valid to measure a snapshot outcome? .....or am I just barking?

What do people think?

Charlene

article

Please forgive me for not remembering the name of the person that I spoke to at length on empowerment and assessing needs, at Newmarket, but I promised to post on Senate the details of the work that we discussed as soon as it was in the public domain.An empowerment approach to needs assessment in health visiting practiceANNA M. HOUSTON, SARAH COWLEYJournal of Clinical Nursing; Volume 11, Issue 5, Page 640To that person, thank you for your insightful comments I hope the article is useful to your practice._________________________________________________________________MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx