Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Hey all... I decided to jump on the bandwagon and start a group...Yes, The Toga Man has created a site...its not completely finished yet...but you can still access it... the link is OhioPharmacyTechnicians even if you arent in Ohio. I would love to have anyone join Pankey, CPhT Dayton, OHIO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Hello W.R., On Friday, May 28, 2004 at 1:51:51 PM you wrote: > dsreflux/ > " Down Syndrome Reflux is a place where parents, family and friends of people > with Down Syndrome can find reflux support. " lol You gotta be kidding me, pretty soon there will be a list for everything that even children without DS have, in otherwords things common to children everywhere. There will be so many specialized lists that the good ole DS lists will have nothing to talk about but the weather. Im waiting for the Down Syndrome Toe Jam Support Group, for those parents needing support in dealing with Toe Jam and the problems it is causing their children with Down Syndrome. Soon you'll have to be subscribed to 100 lists to get the same support and information that the Down Syn List and list used to provide. -- Tim Casten,ZDC National Air Traffic Controllers Association Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 OMG!!! For once (and I hope only once) I find myself agreeing with Timbo. And what's really scary is I've heard sensible people (like Tracey) voice similar views. On the one hand there do seem to be already too many Ds groups. On the other, there are times when specific focus, somewhat limited interest, and knowledge and experience with specific issues is called for. The more the merrier and sometimes all for the best (is that about right, Pam?). Fortunately, Charlie has two doting parents and at least some of his four siblings who will see that he is not overly encumbered with toe jam. Oh well, what to do? Thanks, Timbo. You have a good one. Keep 'em flying, keep 'em up there, and try not to bump 'em into each other too much. Regards, Bob Re: Another group Hello W.R., On Friday, May 28, 2004 at 1:51:51 PM you wrote: > dsreflux/ > " Down Syndrome Reflux is a place where parents, family and friends of > people with Down Syndrome can find reflux support. " lol You gotta be kidding me, pretty soon there will be a list for everything that even children without DS have, in otherwords things common to children everywhere. There will be so many specialized lists that the good ole DS lists will have nothing to talk about but the weather. Im waiting for the Down Syndrome Toe Jam Support Group, for those parents needing support in dealing with Toe Jam and the problems it is causing their children with Down Syndrome. Soon you'll have to be subscribed to 100 lists to get the same support and information that the Down Syn List and list used to provide. -- Tim Casten,ZDC National Air Traffic Controllers Association Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Hey Tim- Actually motility problems are more common in children with DS and can lead to GERD if severe. From Discovery Health: " People with Down syndrome are more at risk for some diseases and conditions, including: · leukemia · gastroesophageal reflux disease (GERD) and other digestive disorders · frequent ear infections, including acute otitis media · diabetes · hypothyroidism, or a low level of thyroid hormone · lung infections, such as pneumonia · Alzheimer''s disease, which causes memory loss and impaired thinking..... " http://health.discovery.com/encyclopedias/609.html I'm still signed on to this list. It isn't my intention to have anyone leave .... I just wanted to give those of us with kids that have DS and GERD a forum to discuss it with one another. Warmest Regards, Schulte Mom to Ben-15, Brendt-13, Blake-3.5(ds) and -2.5(ds) dsreflux http://www.babiesonline.com/babies/b/blakefred Re: Another group Hello W.R., On Friday, May 28, 2004 at 1:51:51 PM you wrote: > dsreflux/ > " Down Syndrome Reflux is a place where parents, family and friends of people > with Down Syndrome can find reflux support. " lol You gotta be kidding me, pretty soon there will be a list for everything that even children without DS have, in otherwords things common to children everywhere. There will be so many specialized lists that the good ole DS lists will have nothing to talk about but the weather. Im waiting for the Down Syndrome Toe Jam Support Group, for those parents needing support in dealing with Toe Jam and the problems it is causing their children with Down Syndrome. Soon you'll have to be subscribed to 100 lists to get the same support and information that the Down Syn List and list used to provide. -- Tim Casten,ZDC National Air Traffic Controllers Association 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 May 28, 2004 Report Share Posted May 28, 2004 Thank you! ----- Original Message ----- From: " W.R. Black " <wrblack@...> > If nothing else, just to see the > great photo on the home page. > -- Bob, whose shirts haven't fully recovered from Charlie and are > now being worked over by > > p.s. to , I'll send something similar to Uno Mas but don't think I'll > be able to copy you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Hello W.R., On Friday, May 28, 2004 at 2:14:59 PM you wrote: > OMG!!! For once (and I hope only once) I find myself agreeing with Timbo. ha ha ha -- Tim Casten,ZDC National Air Traffic Controllers Association Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Tim are you afraid your missing out on our stimulating conversations about puking, constipation, motility, prevacid, reglan, feeding therapy, aspiration, etc...... It's tons of fun! LOL! .... *grin* But seriously, just be glad we aren't subjecting you to it if you don't have to live with it!!!! who isn't so lucky.... Re: Another group Hello Kathy, On Friday, May 28, 2004 at 1:49:03 PM you wrote: > ' It is a more > efficient use of available time and resources for those who prefer/need > that. Like I said, there are parents who don't have the time/energy to deal > with the big lists,,or maybe they just feel more comfortable on a smaller > list...and they can trade articles/info about the specific diagnosis without > boring the other listmembers of the general lists who don't have to deal > with that diagnosis. > No one said that and downsyn are going to be run out of business > by these other lists. There are lots of people like you who don't see a need > for the specialty lists, I am sure. But that doesn't mean that everyone else > has to agree with you;-) Never said everyone has to agree with me. Never said anyone has to agree with me. Most don't agree with me. But they do listen to me. Except pilots, most of the time they don't listen to me. The problem I see is the ole saying too many cooks in the kitchen spoil the soup. There is a large amount of seasoned parents on the established lists who have dealt with everything from heart surgery to reflux to seizure disorders and such. To name a few, Len L, Pam, , , Sandy, Bob and Bob, Kathy and yes Alot of them look forward to provide answers to new parents issues this is the way listservs are designed to work. You subscribe ask a question for support and the topic gets milled around for a few days and the person needing the support has a chance to see who is well versed in the subject and who is not. They then can have a more indepth question and answer session via private email. And you know what the next thing you know this parent who received support is now giving it on the list, using the list to learn and get support from a very experienced group of 500 plus. When you create specialized lists there is a increased chance that this person may never make it to the larger lists. Most of the experienced parents are not on these lists and do not have the time to devote 20 hours a day sifting thru 20 different lists to provide input and support. In essence you have taken two or three strong support groups and watered them down to where there is not much left to talk about except the weather and toe jam. -- Tim Casten,ZDC National Air Traffic Controllers Association 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 May 28, 2004 Report Share Posted May 28, 2004 They didn't leave them out I did. The whole article is several pages and I only sent the important part. I know experienced parents of the list (like yourself) have valuable info. That's why I'm on it silly. Take care, Re: Re: Another group Hello , On Friday, May 28, 2004 at 2:26:47 PM you wrote: > From Discovery Health: > " People with Down syndrome are more at risk for some diseases and > conditions, including: · leukemia · gastroesophageal reflux disease > (GERD) and other digestive disorders · frequent ear infections, > including acute otitis media · diabetes · hypothyroidism, or a low > level of thyroid hormone · lung infections, such as pneumonia · > Alzheimer''s disease, which causes memory loss and impaired > thinking..... " http://health.discovery.com/encyclopedias/609.html , Thanks for the info. But they left off quite a few. All have been dealt with and supported from a vast amount of knowledge and background available at down-syn and . Knowledge and background that just isnt available on the small lists. But you know what, this is just my opinion. I must go now to work airplanes and thunderstorms. -- Tim Casten,ZDC National Air Traffic Controllers Association 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 May 28, 2004 Report Share Posted May 28, 2004 Hello Kathy, On Friday, May 28, 2004 at 1:49:03 PM you wrote: > ' It is a more > efficient use of available time and resources for those who prefer/need > that. Like I said, there are parents who don't have the time/energy to deal > with the big lists,,or maybe they just feel more comfortable on a smaller > list...and they can trade articles/info about the specific diagnosis without > boring the other listmembers of the general lists who don't have to deal > with that diagnosis. > No one said that and downsyn are going to be run out of business > by these other lists. There are lots of people like you who don't see a need > for the specialty lists, I am sure. But that doesn't mean that everyone else > has to agree with you;-) Never said everyone has to agree with me. Never said anyone has to agree with me. Most don't agree with me. But they do listen to me. Except pilots, most of the time they don't listen to me. The problem I see is the ole saying too many cooks in the kitchen spoil the soup. There is a large amount of seasoned parents on the established lists who have dealt with everything from heart surgery to reflux to seizure disorders and such. To name a few, Len L, Pam, , , Sandy, Bob and Bob, Kathy and yes Alot of them look forward to provide answers to new parents issues this is the way listservs are designed to work. You subscribe ask a question for support and the topic gets milled around for a few days and the person needing the support has a chance to see who is well versed in the subject and who is not. They then can have a more indepth question and answer session via private email. And you know what the next thing you know this parent who received support is now giving it on the list, using the list to learn and get support from a very experienced group of 500 plus. When you create specialized lists there is a increased chance that this person may never make it to the larger lists. Most of the experienced parents are not on these lists and do not have the time to devote 20 hours a day sifting thru 20 different lists to provide input and support. In essence you have taken two or three strong support groups and watered them down to where there is not much left to talk about except the weather and toe jam. -- Tim Casten,ZDC National Air Traffic Controllers Association Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Hello , On Friday, May 28, 2004 at 2:26:47 PM you wrote: > From Discovery Health: > " People with Down syndrome are more at risk for some diseases and > conditions, including: · leukemia · gastroesophageal reflux disease > (GERD) and other digestive disorders · frequent ear infections, > including acute otitis media · diabetes · hypothyroidism, or a low > level of thyroid hormone · lung infections, such as pneumonia · > Alzheimer''s disease, which causes memory loss and impaired > thinking..... " http://health.discovery.com/encyclopedias/609.html , Thanks for the info. But they left off quite a few. All have been dealt with and supported from a vast amount of knowledge and background available at down-syn and . Knowledge and background that just isnt available on the small lists. But you know what, this is just my opinion. I must go now to work airplanes and thunderstorms. -- Tim Casten,ZDC National Air Traffic Controllers Association Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Hello , On Friday, May 28, 2004 at 3:00:32 PM you wrote: > Tim are you afraid your missing out on our stimulating > conversations about puking, constipation, motility, prevacid, > reglan, feeding therapy, aspiration, etc. Hmmm How do you know what im like after sharing a night with tequilla. did you send pictures? -- Tim Casten,ZDC National Air Traffic Controllers Association Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 You are right Tim. This is such a large support group that there is a wealth of knowledge and information out there. Not only about health issues but also about stuff like wandering. Do you know I have NEVER read anything on this subject and didn't know it was a problem for many kids who have DS until I read it on this list. Also there are many other issues such as the IEP " S, raising older kids with DS and their issues, issues such as special needs trusts. These are all issues among many more that have been talked about on this group. I for one am very thankful for it and also for the lack of real problems among the members. I have been a member for about 3 and a half years already (boy time flies) and have learned much. I hope I also have been able to share some and give back to this very valuable group of people. Loree Re: Another group Hello Kathy, On Friday, May 28, 2004 at 1:49:03 PM you wrote: > ' It is a more > efficient use of available time and resources for those who prefer/need > that. Like I said, there are parents who don't have the time/energy to deal > with the big lists,,or maybe they just feel more comfortable on a smaller > list...and they can trade articles/info about the specific diagnosis without > boring the other listmembers of the general lists who don't have to deal > with that diagnosis. > No one said that and downsyn are going to be run out of business > by these other lists. There are lots of people like you who don't see a need > for the specialty lists, I am sure. But that doesn't mean that everyone else > has to agree with you;-) Never said everyone has to agree with me. Never said anyone has to agree with me. Most don't agree with me. But they do listen to me. Except pilots, most of the time they don't listen to me. The problem I see is the ole saying too many cooks in the kitchen spoil the soup. There is a large amount of seasoned parents on the established lists who have dealt with everything from heart surgery to reflux to seizure disorders and such. To name a few, Len L, Pam, , , Sandy, Bob and Bob, Kathy and yes Alot of them look forward to provide answers to new parents issues this is the way listservs are designed to work. You subscribe ask a question for support and the topic gets milled around for a few days and the person needing the support has a chance to see who is well versed in the subject and who is not. They then can have a more indepth question and answer session via private email. And you know what the next thing you know this parent who received support is now giving it on the list, using the list to learn and get support from a very experienced group of 500 plus. When you create specialized lists there is a increased chance that this person may never make it to the larger lists. Most of the experienced parents are not on these lists and do not have the time to devote 20 hours a day sifting thru 20 different lists to provide input and support. In essence you have taken two or three strong support groups and watered them down to where there is not much left to talk about except the weather and toe jam. -- Tim Casten,ZDC National Air Traffic Controllers Association 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 May 28, 2004 Report Share Posted May 28, 2004 If my child with Downs had the problem of reflux, I would want to check with a group of the regular population. Many problems that my son has need the same treatment that people without DS need. Just like if he has an ear infection, I want the doctor to consider the same antibiotics that our doctor prescribes for my other kids. I've been a ds parent for 15 years, so I am well aware that our kids need special attention. But in MOST areas of his life his needs are just like my other children. For better or worse--he is more like the rest of the family than he is different. Just my 2-cents worth. Have a good weekend everyone. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Shirley- I *do* belong to a group for Reflux among the general population. I enjoy that list because I have experiences in common with those parents. Before I started getting flamed ... I used to enjoy this list. Because I have experiences in common with the parents on this list. They are both large lists. The DSReflux list is a small group of people with MORE in common because we share two common interests instead of just one. It has been great to find a few people with so much in common ... and I love it. My advice to anyone that thinks the group is dumb would be ... don't join. But, I'm going to keep telling people about it... just in case there is someone out there that needs the help. Schulte RE: Another group If my child with Downs had the problem of reflux, I would want to check with a group of the regular population. Many problems that my son has need the same treatment that people without DS need. Just like if he has an ear infection, I want the doctor to consider the same antibiotics that our doctor prescribes for my other kids. I've been a ds parent for 15 years, so I am well aware that our kids need special attention. But in MOST areas of his life his needs are just like my other children. For better or worse--he is more like the rest of the family than he is different. Just my 2-cents worth. Have a good weekend everyone. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 LOL!! Ok, so you all who've known Tim and I for ages also know we sometimes disagree. - if having a seperate listserv to address reflux would be helpful - go for it. In the end, what makes a successful listserv is the dedication of the people who own it or stay active on it. Good Luck! And I hope you stay on here, too --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.691 / Virus Database: 452 - Release Date: 5/26/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Hello , A reminder of what Schulte typed on: Friday, May 28, 2004 at 19:04:14 GMT -0500 > Before I started getting flamed . Flamed, that was no flame, that was just me stating my opinion. Flaming is something directed at you, never happened in this case. Just my opinion. If I were to FLAME you would know it cause your monitor would be smoking, he he he But with old age and gray hair I have mellowed out. Im old theres no smoke left. he he he If anything was FLAMED it was that damn DS Hangnail List. -- Tim Casten,ZDC National Air Traffic Controllers Association Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 I just have to add one more thing.... Sometimes I wish there was a list for DS and seizure disorders because there are few of us out here who have kids with both. And other times, I wish for a list on DS and Neurobehavioral Disorders that doesn't involve autism or ASD. Again, there aren't too many of us whose children have both. I simply do not have the time or energy to run another list. I have considered running a UpsndownsBabies list for those new parents who just arent at the stage of reading about IEP's and middle childhood issues. I've been on here since was an infant and I still am connected to those other parents I met years ago whose children are close to 's age. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.691 / Virus Database: 452 - Release Date: 5/26/2004 Quote Link to comment Share on other sites More sharing options...
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