Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 What a great program. It is something that I wish would catch on to other medical schools across the country. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Behnke Sent: Wednesday, July 09, 2008 3:19 PM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Comment on Doctors I just wanted to share with you all that I was once a part of a program where future family doctors and peds where getting ready to graduate and they were required to visit with parents of children with special needs. 3 stages, 1-ground rounds where it was more like it was in ER where you have a room full of docs and some parents giving a presentation. 2- Home visit where they would come to your house and see what it was like at home. We would set up our homes in stations bathing, eating ect. so they can get a sense of what parents go through at home. 3- parent interviews where they were free to ask question for 2 hours. The reason I mention this is that they were given a chapter on special needs. Common ones like CP, CF, DS, Autism. It was a chapter of worst case scenarios. I was asked during a home visit once - how does it feel to have a child that won't walk, talk, eat, play with sibs and take attention away from other kids. Well after showing pictures of my two boys playing, I then invited my oldest to bring his brother in. He then walked to them and put his hand out to shake, gave high 5's and smiled and laughted and hugged them as they left. That doc said to me, they did not put that in the book. The purpose of this was so that the time when a mom calls to see if they see children with DS or other needs, they won't say no. I was a wonderful program and they got as much out of it as I did. B --- Priscilla wrote: > And you actually trust your ped to know anything > much about DS? Or > anything much about nutritional suppliments? My ped > told me at the > beginning that he knew I knew more than he did about > DS --He also > agreed with the statement that MD's in his day > studied DS in school > for anywhere from 5 to 15 minutes total. What > should that tell us? > Anyone who's read these lists for that amount of > time probably knows > as much if not more than they do about DS. They > also unbelievably > don't study much at all about nutrition. > > And your needs for vitamins and suppliments are much > different than a > person with DS's need --after all, they have an > extra chromosome in > every cell of their body giving them extra dosages > of many things we > don't have so you can't judge from yourself. A > better approach might > be doing as Dixie Lawrence did way back and giving > suppliments and > taking bloodtests to see what they had plenty of and > what they were > lacking in. That was the basis of Targeted > Nutritional > International. > > Everyone's genes are different making each one need > different things. > > Also even if your children don't have DS, they have > recently come out > with studies indicating we none probably get enough > nutrients from > our food. > > Priscilla K > > Re: is DS a disease > Posted by: > " Bolduc " jhunter5431@... > > jezecasmom > Wed Jul > 9, 2008 11:16 am (PDT) I > have 2 girls both > with different special needs and neither one takes > any supplements or > vitamins. I have asked the ped. if they needed any > vitamins/supplements and he said if they eat > correctly they are > getting enough. I know I also will not give them > anything that I > wouldn't want to take first myself to know what it > would do to a > person. > > > > > > Priscilla Kendrick, married 29 years to Darrel and > parents of 9 kids including Evan, 11, born with Down > Syndrome and Spina Bifida > > " My strength is made perfect in weakness. " > " My grace is sufficient. " II Corinthians 12:9 KJV > > > > > ------------------------------------ > > 1. Anything suggested on this site or opinions > offered are not intended to be medical or > pharmaceutical advice or otherwise take the place of > your physicians orders, nor to diagnose or treat > your specific health problems. > Please discuss all methods of treatment with your > practitioner. > > 2 *****WARNING: Flames and inappropriate treatment > of other members on this list will NOT be tolerated. > > 3. Our HOME page is > http://groups.yahoo.com/group/DownSyndromeInfoExchange > where all archived posts as well as photos,links, > files, articles etc. are found. You " MUST " have a > Yahoo ID and pass word to enter it. > > To contact Carol, owner & moderator > doihavtasay@... > > To contact Kathy, owner & moderator > kathy_r@... > > To contact , owner & moderator > noliptoday@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 At Louisiana State Univ in New Orleans, the first year medical students raise money and host "Tiger Camp" for a week full of activities for special needs kids. It is jam packed: Global Wildlife, Abita Quail Farm, children's museum, zoo, aquarium, IMAX, bowling, laser tag. I'm sure they see quite a lot and get an appreciation of what parents deal with. Mindy RE: [DownSyndromeInfoExchange] Comment on Doctors What a great program. It is something that I wish would catch on to other medical schools across the country. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE "The future belongs to those who believe in the beauty of their dreams."– Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of BehnkeSent: Wednesday, July 09, 2008 3:19 PMTo: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Comment on Doctors I just wanted to share with you all that I was once apart of a program where future family doctors and pedswhere getting ready to graduate and they were requiredto visit with parents of children with special needs. 3 stages, 1-ground rounds where it was more like itwas in ER where you have a room full of docs and someparents giving a presentation. 2- Home visit wherethey would come to your house and see what it was likeat home. We would set up our homes in stationsbathing, eating ect. so they can get a sense of whatparents go through at home. 3- parent interviews wherethey were free to ask question for 2 hours. The reason I mention this is that they were given achapter on special needs. Common ones like CP, CF,DS, Autism. It was a chapter of worst case scenarios.I was asked during a home visit once - how does itfeel to have a child that won't walk, talk, eat, playwith sibs and take attention away from other kids. Well after showing pictures of my two boys playing, Ithen invited my oldest to bring his brother in. Hethen walked to them and put his hand out to shake,gave high 5's and smiled and laughted and hugged themas they left. That doc said to me, they did not putthat in the book. The purpose of this was so that the time when a momcalls to see if they see children with DS or otherneeds, they won't say no. I was a wonderful programand they got as much out of it as I did. B--- Priscilla <priskend1> wrote:> And you actually trust your ped to know anything> much about DS? Or> anything much about nutritional suppliments? My ped> told me at the> beginning that he knew I knew more than he did about> DS --He also> agreed with the statement that MD's in his day> studied DS in school> for anywhere from 5 to 15 minutes total. What> should that tell us? > Anyone who's read these lists for that amount of> time probably knows> as much if not more than they do about DS. They> also unbelievably> don't study much at all about nutrition.> > And your needs for vitamins and suppliments are much> different than a> person with DS's need --after all, they have an> extra chromosome in> every cell of their body giving them extra dosages> of many things we> don't have so you can't judge from yourself. A> better approach might> be doing as Dixie Lawrence did way back and giving> suppliments and> taking bloodtests to see what they had plenty of and> what they were> lacking in. That was the basis of Targeted> Nutritional> International.> > Everyone's genes are different making each one need> different things.> > Also even if your children don't have DS, they have> recently come out> with studies indicating we none probably get enough> nutrients from> our food.> > Priscilla K > > Re: is DS a disease > Posted by: > " Bolduc" jhunter5431charter (DOT) net> > jezecasmom > Wed Jul> 9, 2008 11:16 am (PDT) I> have 2 girls both> with different special needs and neither one takes> any supplements or> vitamins. I have asked the ped. if they needed any> vitamins/supplements and he said if they eat> correctly they are> getting enough. I know I also will not give them> anything that I> wouldn't want to take first myself to know what it> would do to a> person. > > > > > > Priscilla Kendrick, married 29 years to Darrel and> parents of 9 kids including Evan, 11, born with Down> Syndrome and Spina Bifida> > "My strength is made perfect in weakness." > "My grace is sufficient." II Corinthians 12:9 KJV> > > > > ------------------------------------> > 1. Anything suggested on this site or opinions> offered are not intended to be medical or> pharmaceutical advice or otherwise take the place of> your physicians orders, nor to diagnose or treat> your specific health problems. > Please discuss all methods of treatment with your> practitioner.> > 2 *****WARNING: Flames and inappropriate treatment> of other members on this list will NOT be tolerated.> > 3. Our HOME page is>http://groups.yahoo.com/group/DownSyndromeInfoExchange> where all archived posts as well as photos,links,> files, articles etc. are found. You "MUST" have a> Yahoo ID and pass word to enter it.> > To contact Carol, owner & moderator> doihavtasaycomcast (DOT) net> > To contact Kathy, owner & moderator> kathy_rCOMCAST (DOT) NET> > To contact , owner & moderator> noliptodaybellsouth (DOT) net> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 You're right. I think what was talking about was Project DOCC (Delivery of Chronic Care) It is an awesome program. I've been part of it here in Chattanooga since was 2. We've seen some really great changes take place in the residents and their attitudes and treatment of families. There are DOCC groups in about 2 dozen hospitals around the nation. www.projectdocc.org is under construction right now and not completely functioning, but google Project DOCC and you'll get tons of websites on individual hospitals and their programs. If there's one near you, I encourage you to sign up! Your story could potentially make a difference for thousands of kids! Mattheiss, Executive DirectorLifeLine, Inc.Reaching Families of Those with Special Needs With Support, Education, and Respitewww.LifeLineFamilies.org-- " Dinkins-Borkowski" wrote: What a great program. It is something that I wish would catch on to other medical schools across the country. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE "The future belongs to those who believe in the beauty of their dreams."– Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of BehnkeSent: Wednesday, July 09, 2008 3:19 PMTo: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Comment on Doctors I just wanted to share with you all that I was once apart of a program where future family doctors and pedswhere getting ready to graduate and they were requiredto visit with parents of children with special needs. 3 stages, 1-ground rounds where it was more like itwas in ER where you have a room full of docs and someparents giving a presentation. 2- Home visit wherethey would come to your house and see what it was likeat home. We would set up our homes in stationsbathing, eating ect. so they can get a sense of whatparents go through at home. 3- parent interviews wherethey were free to ask question for 2 hours. The reason I mention this is that they were given achapter on special needs. Common ones like CP, CF,DS, Autism. It was a chapter of worst case scenarios.I was asked during a home visit once - how does itfeel to have a child that won't walk, talk, eat, playwith sibs and take attention away from other kids. Well after showing pictures of my two boys playing, Ithen invited my oldest to bring his brother in. Hethen walked to them and put his hand out to shake,gave high 5's and smiled and laughted and hugged themas they left. That doc said to me, they did not putthat in the book. The purpose of this was so that the time when a momcalls to see if they see children with DS or otherneeds, they won't say no. I was a wonderful programand they got as much out of it as I did. B--- Priscilla <priskend1> wrote:> And you actually trust your ped to know anything> much about DS? Or> anything much about nutritional suppliments? My ped> told me at the> beginning that he knew I knew more than he did about> DS --He also> agreed with the statement that MD's in his day> studied DS in school> for anywhere from 5 to 15 minutes total. What> should that tell us? > Anyone who's read these lists for that amount of> time probably knows> as much if not more than they do about DS. They> also unbelievably> don't study much at all about nutrition.> > And your needs for vitamins and suppliments are much> different than a> person with DS's need --after all, they have an> extra chromosome in> every cell of their body giving them extra dosages> of many things we> don't have so you can't judge from yourself. A> better approach might> be doing as Dixie Lawrence did way back and giving> suppliments and> taking bloodtests to see what they had plenty of and> what they were> lacking in. That was the basis of Targeted> Nutritional> International.> > Everyone's genes are different making each one need> different things.> > Also even if your children don't have DS, they have> recently come out> with studies indicating we none probably get enough> nutrients from> our food.> > Priscilla K > > Re: is DS a disease > Posted by: > " Bolduc" jhunter5431charter (DOT) net> > jezecasmom > Wed Jul> 9, 2008 11:16 am (PDT) I> have 2 girls both> with different special needs and neither one takes> any supplements or> vitamins. I have asked the ped. if they needed any> vitamins/supplements and he said if they eat> correctly they are> getting enough. I know I also will not give them> anything that I> wouldn't want to take first myself to know what it> would do to a> person. > > > > > > Priscilla Kendrick, married 29 years to Darrel and> parents of 9 kids including Evan, 11, born with Down> Syndrome and Spina Bifida> > "My strength is made perfect in weakness." > "My grace is sufficient." II Corinthians 12:9 KJV> > > > > ------------------------------------> > 1. Anything suggested on this site or opinions> offered are not intended to be medical or> pharmaceutical advice or otherwise take the place of> your physicians orders, nor to diagnose or treat> your specific health problems. > Please discuss all methods of treatment with your> practitioner.> > 2 *****WARNING: Flames and inappropriate treatment> of other members on this list will NOT be tolerated.> > 3. Our HOME page is>http://groups.yahoo.com/group/DownSyndromeInfoExchange> where all archived posts as well as photos,links,> files, articles etc. are found. You "MUST" have a> Yahoo ID and pass word to enter it.> > To contact Carol, owner & moderator> doihavtasaycomcast (DOT) net> > To contact Kathy, owner & moderator> kathy_rCOMCAST (DOT) NET> > To contact , owner & moderator> noliptodaybellsouth (DOT) net> Quote Link to comment Share on other sites More sharing options...
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