Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2000 Report Share Posted July 13, 2000 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/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 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/ >> ------------------------------------------------------------------------ >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 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/ > > ------------------------------------------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2000 Report Share Posted August 4, 2000 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2000 Report Share Posted August 7, 2000 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 No amnio here. Just ultras but only two of those and no reason to suspect anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 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? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 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 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2001 Report Share Posted April 6, 2001 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 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 >> >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 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 > >> > >> > >> > __________________________________________________ > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 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 Quote Link to comment Share on other sites More sharing options...
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