Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Well said Jenn. And IMHO I believe this is a support group not a doctor referral database. Its impossible for ISOP to know which docs to support and which not to and probably for legal reasons as well. It is up to parent to parent to provide/inform which docs are doing the proper method of casting. Leggett <jennifer.leggett@...> wrote: >From what I understand parents can add doctors to the database. I don't >think or ISOP has a posted list of doctors that ISOP recommends for >legal reasons. Here is the link to where you can add your doctor. >infantile scoliosis treatment/database?method=reportRows & tb\ l=4Please >if your doctor is trained add them to the group so others can benefit >from this information. You can also have them or their care coordinator >contact . I am pretty sure that would be more than happy to >recommend a doctor once she has SEEN that they have the correct table and >are applying the correct cur outs and have the correct anchoring on the >hips. I know she likes to confirm with them, not because she doesn't >believe CAST members or doctors on their word, but because there is SO much >misinformation out there and sometimes parents and doctors are unaware that >Mehta's techniques are not being completely followed and doesn't not >want to give out info to parents without knowing it is 100% accurate. > >Jenn >Mommy to Cole and Max > >On Tue, Nov 16, 2010 at 9:31 AM, CHRISTINA DUBY <cashawks@...> wrote: > >> >> >> Catie, >> >> You are my girl, my teacher, my best friend across the miles, I truly feel >> that. You have bene there for me the year that we've both shared smiles and >> tears over phone, email, etc. I thank you for all your words, advice, and >> sincerity to each one on this group. You DO only try to help and educate >> others, you are truly, an angel to many of us. Thank you for your support >> and helping me get support for Dr. L. I was told he would be added to the >> list, but you are right, he is not. He has been our blessing for Drue. >> >> Love you and your little men so much, Thank you from all of us!! >> >> and Jimmy >> Mommy and daddy to Grace, 10, Tryston, 5 >> Drue, 2 out of cast #2 >> 13* out of cast, down from 26*, started at 40* >> In second brace >> St. Louis Shriners Hospital >> >> >> >> >> From: Chad And Catie Diefenbaugh <chadandcatie@...> >> Subject: Cleansing >> >> infantile scoliosis treatment >> Date: Tuesday, November 16, 2010, 5:57 AM >> >> >> >> I also stand firmly behind my original post which was meant to only say >> Hey Dr. DA said this was a good casting doctor. In the original email to me >> it further said that not every family can be casted is SLC, the doctors in >> Denver are good and Dr. DA said they should be trusted. I in no way doubt >> the information provided to me by another parent to be false and still stand >> behind the original post. >> >> I am a passionate advocate for my child and all children dealing with >> this. Whether I like the parents or not I will always support the >> children. My years journey has taken me on a different path than what this >> group has to offer. I don't believe scaring new families can be hidden >> behind what Cotrel/Morel or Min Mehta pioneered. I stand behind my thoughts >> that the Growth as a Corrective force video should be easily accesible for >> new families and I am glad that Amil has made it available to families on >> YOU TUBE. You should be too. ARISE is defunct and has been since 2008. >> There is no money that can go their way anymore and having this available to >> all is in the best interest of ISOP and CAST. It is an education tool not a >> fundraiser. >> >> St. Louis is a wonderful casting center and Dr. L received hands on >> training from Dr. S in Chicago. He has casted children with great success. >> He should be embraced. Contact his office through St. Louis Children's. >> Add him to the group. You told you would months ago. >> >> You seek to educate me in every reply you send my way. I am educated. I >> have traveled this road for a year seen friends come and go from this group >> and never sought to diminish your imprint on casting. I don't need to be >> reminded your journey is greater than mine. I am living this right now. I >> understand your pain as a mother. I don't believe your sacrifice or that of >> any of us gives Carte Blanche to be dismissive or mean. I have stopped the >> posts from streaming to my inbox. If you would like to continue further >> dialogue off post, I welcome it. >> Thanks to my girls for all the support. You guys are so mother hen it made >> me smile! This is a good dialogue, cleansing. >> >> Catie,Cody(9) & 's(23mo)mom (in 5th cast 35*out of cast, 67* start @ >> 10mo) proudly at Chicago Shriners >> >> >> ------------------------------ >> *From:* " heather@... " <heather@...> >> *To:* infantile scoliosis treatment >> *Sent:* Mon, November 15, 2010 11:35:48 PM >> *Subject:* Re: Denver & Canada >> >> >> Catie, >> When did I question Dr. R specifically? I did recently have questions >> about a hosp in Denver because as far as I know, the correct windows arent >> being trimmed and a few Denver families have expressed that their block of >> casts were removed prematurely. Thanks for the CV, but to my knowledge >> this is the 1st mention of Dr. R (?) doing a partial residency at Shriners >> Intermountain and certainly the 1st time Ive heard that he casted your >> friends child. Perhaps, I missed an earlier post on this? >> Im sorry you are infuriated by my posts. I only try to make the >> differences between casting techniques and principles so families can >> properly advocate and develop the best care plan for their child, who may >> only have a small window to benefit. I have been in the OR with the >> pioneer for over 25 EDf applications and only share what I have learned >> from over 8 yrs of Et experience. I can tell you that I am happy that >> parents find solid info here on ET principles & EDF technique, but I have >> never stated to a parent that the doc they have chosen is unqualified. If >> parents ask if the doc has been trained by the pioneer or one of the core >> group of surgeons she trained I answer honestly (according to what I know >> at the time). I have seen some unbelievable casts over the years and they >> have all come from untrained centers. I have seen many children miss >> their window to grow straight due to improperly applied casts using Risser >> principles. Ive seen cast sores that are so deep the child is unable to >> tolerate a series of casts for over a year as the wound must heal. >> Leaving children with deformities they could have avoided. >> I have stated that to apply proper ET a proper frame is needed. I have >> stated that properly trimmed windows in front/back are essential to >> prevent chest wall deformities & address rotation. I have stated that >> according to the pioneer and other experienced ET docs that under arm >> jackets are most effective for curves above T-8/9. I have stated >> repeatedly that there are specific ET guidelines to be followed in order >> for the block of EDF casts to be most effective. And most recently, I >> stated that hands on training was more effective than a demonstration on a >> video monitor. ISOP learned this the hard way as we spent a lot of money >> doing this in the past and we realized that it wasnt as effective as hands >> on (because most US docs learned only risser). >> Believe me, I know exactly how scary it is to have a non EDF cast. My >> daughter had them for many years before I was able to bring the pioneer to >> SLC. >> If ISOP knows that a new hospital is applying ET, has a frame, is trimming >> correct windows, following ET principles, are experiencing positive >> results and receives rave reviews from parents, Im the 1st to congratulate >> them. If I read a parent has a child in cast with no windows, cast sores, >> no frame , no training and/or arent following ET principles/guidelines >> then Im a bit hesitant to congratulate as their child may not be getting >> the best. That's all. Plain & simple. >> There have been quite a few hospitals over the last 5yrs that have not >> embraced ET w/ EDF casting (and have been invited to multiple ETP's)and >> are now getting on board, so its only natural that I would ask families >> going to some of these hospitals very specific questions in order to help >> them....Not hurt them Catie. >> Im perplexed on why you feel CAST isnt supportive of new hospitals taking >> on ET. I strongly believe that pointing out the differences between >> techniques and principles are helpful for people beginning their ET >> journey. >> I have pointed out good questions to ask about treatment in St. Louis and >> Portland, so parents could find out for themselves. As far as Chicago is >> concerned and Dr. H.? What exactly are you referring to? Chicago is >> great and this continual dialogue about CAST not supporting Chicago is >> false. >> I hope you remain on CAST and this is resolved. If you no longer want to >> be a part of CAST, you can remove yourself by unsubscribing. >> >> > Dr. Jaren R. is a pediatric orthopedic surgeon with Rocky Mountain >> > Pediatric >> > Orthopedics. Dr. R. graduated from University of Iowa College of >> > Medicine, and >> > went on to complete his orthopedic surgery residency there as well. He >> > completed his fellowship in pediatric orthopedic surgery at Primary >> > Children's >> > Hospital/Shriners Hospital in Salt Lake City, Utah. >> > His last name rhymes with Smiley. >> > >> > This is the doctor in question. The fact that he did his fellowship >> > under Dr. >> > Da in SLC, casted one of our friends children over a year ago with Dr. DA >> > would >> > qualify him as having hands on training. It is not my intent to post >> > information like this to discount in anyway what you are doing. I do >> > however >> > find it sad and infuriating when I see parents come to this board, >> share >> > their >> > experience, get educated on the principles of ET/EDF and then be told >> that >> > their >> > doctor is not qualified to apply such casts.  Their is nothing scarier >> > that >> > thinking the person who just placed your childs cast is not qualified to >> > do >> > it. Instead of saying CONGRATULATIONS to your doctor and center for >> > taking the >> > effort to embrace this principle.  Although my original post truly >> > didn't think >> > it was this group that discouraged 2 families from casting in Denver, I >> > now see >> > I must have been sorely mistaken. It happened with a family in Portland >> > & St. >> > Louis. Dr. H in Chicago was said to have not embraced at one time. >> > Good thing >> > times have changed.  If this format is to share information and >> > experience then >> > why is everything I share chastised or picked apart with the exception of >> > some >> > trivial feel good story about my son and a football team. >> > >> > >> > I have remained on this group because I still held out hope that maybe I >> > could >> > help one family as my Chicago sisters have helped me. I stayed at the >> > request >> > of my center who felt the families I have helped traverse the Shriners >> > application process and initial cast day at our center was a benefit to >> > both our >> > surgeons and those families. After a year of participating though I can >> > honestly say I am tiring of posting and being picked apart. I have more >> > constructive things to do with my time and better ways to help the >> > families at >> > my center and other centers.  >> >  Thanks to all the friends I have made in this journey. I wish this >> > group the >> > best in their endeavors.  >> > >> >   Catie,Cody(9) & 's(23mo)mom (in 5th cast 35*out of cast, 67* >> > start @ >> > 10mo) proudly at Chicago Shriners >> > >> > >> > >> > >> > >> > ________________________________ >> > From: " heather@...<http://us.mc1146.mail./mc/compose?to=he\ ather%40infantilescoliosis.org> " >> <heather@...<http://us.mc1146.mail./mc/compose?to=he\ ather%40infantilescoliosis.org> >> > >> > To: infantile scoliosis treatment <http://us.mc1146.mail./mc/compose?t\ o=infantile scoliosis treatment%40> >> > Sent: Mon, November 15, 2010 1:52:58 PM >> > Subject: Re: Denver & Canada >> > >> >  >> > Oops. The doc in Denver that has had hands on is Dr. B. at the new Rocky >> > Mtn Childrens Hospital at PSL...(Not Dr. S.) >> > >> >> Thanks for the info, Catie. >> >> >> >> F.Y.I.- the doc in SLC held a casting " demonstration " (not hands on >> >> training)in Halifax, Nova Scotia. There were over 20 Canadian spine >> >> surgeons there, with all 10 Canadian provinces represented. Its my >> >> understanding that they were all very interested in learning the EDF >> >> casting technique, given the high complication rates that all of them >> >> have >> >> experienced with growing rods and VEPTR’s. Its FABULOUS that they are >> >> interested in learning. I hope they are also interested in receiving >> >> hands on experience. ISOP has learned that watching the EDF casting >> >> process on a video monitor is not as effective as actual hands on >> >> training. Many docs have only ever been exposed to Risser, so IMO hands >> >> on is the way to go. Hopefully, more and more surgeons will become >> >> experienced with hands on training and the early treatment principles >> >> for >> >> the treatment of progressive infantile scoliosis. >> >> The doc is SLC will be in WI. this week to give a " hands on " training >> >> tutorial on ET w/ Mehtas EDF, so WI.'s ET Program will now be on the >> >> list. >> >> Im not sure who Dr. R is...(?) I know Dr. E at Denver Childrens and can >> >> say that they are applying ET without trimming a window in back for >> >> rotation. They are also trimming a small round window in front. Nothing >> >> like the widely trimmed chest expansion windows w/ rib flaps. I can also >> >> confirm that Dr. S. at the new Rocky Mtn Childrens Hospital at PSL >> >> recently had hands on training, has a frame and will be applying >> >> appropriate windows. >> >> My goal in giving this info is help parents make the best decision on >> >> how >> >> to proceed in their childs care. Infants & children only have a window >> >> of >> >> time to grow straight gently & permanently and its best not to miss that >> >> window with an improperly applied cast. >> >> Looks like the ET Movement is growing! Way to go SLC! >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>> I just got an email from a friend of mine who's daughter was casted >> >>> last >> >>> week in SLC. She was telling me about all the wonderful doctors and >> >>> centers who have started casting after training with Dr. D in SLC. She >> >>> said they had mentioned specifically the doctor in Denver, Dr.R. She >> >>> said >> >>> that Dr. D felt somehow parents were discouraged from casting in Denver >> >>> due to lack of training which in his opinion couldn't be farther from >> >>> the >> >>> truth. She isn't a apart of this group and I told her I would be happy >> >>> to >> >>> post Dr. D's confidence in the doctors and centers in Denver. She said >> >>> that another of our friends actually had their son casted in SLC with >> >>> this >> >>> doctor almost a year ago while he was doing yet another practicum in >> >>> SLC. >> >>> I just thought this might give the families who may be on the fence >> >>> about >> >>> casting in Denver the boost in confidence they need. Dr. D also >> >>> mentioned >> >>> he trained 22 Canadian doctors in Halifax. One from each province which >> >>> is huge for our >> >>> Canadian friends. >> >>> >> >>> I don't think it was specifically this group who may have discouraged >> >>> these families, but thought it wouldn't hurt to put the positive out >> >>> there. The doctors in SLC, Rochester, & Chicago are constantly sharing >> >>> their facilities and expertise with other Orthopedic Surgeons who are >> >>> expressing an interest in these kids. This year alone I have watched >> >>> new >> >>> centers and families join this group with great stories involving these >> >>> very doctors. St. Louis, Lexington, Boston, Duke, Kansas City >> >>> Childrens >> >>> Mercy and Cincinnati just to name a few. Love to see these families >> >>> getting the care they need closer to home! >> >>> >> >>> Sent from my iPhone >> >>> >> >>> >> >>> >> >> >> >> >> >> >> > >> > >> > >> > >> > >> > >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Just add to the list. > Catie, >  >  You are my girl, my teacher, my best friend across the miles, I truly > feel that. You have bene there for me the year that we've both shared > smiles and tears over phone, email, etc. I thank you for all your words, > advice, and sincerity to each one on this group. You DO only try to help > and educate others, you are truly, an angel to many of us. Thank you for > your support and helping me get support for Dr. L. I was told he would > be added to the list, but you are right, he is not. He has been our > blessing for Drue. >  > Love you and your little men so much, Thank you from all of us!! > > and Jimmy > Mommy and daddy to Grace, 10, Tryston, 5 > Drue, 2 out of cast #2 > 13* out of cast, down from 26*, started at 40* > In second brace > St. Louis Shriners Hospital > > > > > From: Chad And Catie Diefenbaugh <chadandcatie@...> > Subject: Cleansing > infantile scoliosis treatment > Date: Tuesday, November 16, 2010, 5:57 AM > > >  > > > > > > > I also stand firmly behind my original post which was meant to only say > Hey Dr. DA said this was a good casting doctor. In the original email > to me it further said that not every family can be casted is SLC, the > doctors in Denver are good and Dr. DA said they should be trusted. I in > no way doubt the information provided to me by another parent to be false > and still stand behind the original post. >  > I am a passionate advocate for my child and all children dealing with > this. Whether I like the parents or not I will always support the > children. My years journey has taken me on a different path than what > this group has to offer. I don't believe scaring new families can be > hidden behind what Cotrel/Morel or Min Mehta pioneered. I stand behind > my thoughts that the Growth as a Corrective force video should be easily > accesible for new families and I am glad that Amil has made it available > to families on YOU TUBE.  You should be too. ARISE is defunct and has > been since 2008. There is no money that can go their way anymore > and having this available to all is in the best interest of ISOP and > CAST. It is an education tool not a fundraiser. >  > St. Louis is a wonderful casting center and Dr. L received hands on > training from Dr. S in Chicago. He has casted children with great > success. He should be embraced. Contact his office through St. Louis > Children's. Add him to the group. You told you would months > ago.    >  > You seek to educate me in every reply you send my way. I am > educated. I have traveled this road for a year seen friends come and go > from this group and never sought to diminish your imprint on casting.  I > don't need to be reminded your journey is greater than mine. I am > living this right now. I understand your pain as a mother. I don't > believe your sacrifice or that of any of us gives Carte Blanche to be > dismissive or mean. I have stopped the posts from streaming to my > inbox.  If you would like to continue further dialogue off post, I > welcome it. > > Thanks to my girls for all the support. You guys are so mother hen it > made me smile! This is a good dialogue, cleansing. >  Catie,Cody(9) & 's(23mo)mom (in 5th cast 35*out of cast, 67* start > @ 10mo) proudly at Chicago Shriners > > > > > > > From: " heather@... " <heather@...> > infantile scoliosis treatment > Sent: Mon, November 15, 2010 11:35:48 PM > Subject: Re: Denver & Canada > >  > > Catie, > When did I question Dr. R specifically? I did recently have questions > about a hosp in Denver because as far as I know, the correct windows arent > being trimmed and a few Denver families have expressed that their block of > casts were removed prematurely. Thanks for the CV, but to my knowledge > this is the 1st mention of Dr. R (?) doing a partial residency at Shriners > Intermountain and certainly the 1st time Ive heard that he casted your > friends child. Perhaps, I missed an earlier post on this? > Im sorry you are infuriated by my posts. I only try to make the > differences between casting techniques and principles so families can > properly advocate and develop the best care plan for their child, who may > only have a small window to benefit. I have been in the OR with the > pioneer for over 25 EDf applications and only share what I have learned > from over 8 yrs of Et experience. I can tell you that I am happy that > parents find solid info here on ET principles & EDF technique, but I have > never stated to a parent that the doc they have chosen is unqualified. If > parents ask if the doc has been trained by the pioneer or one of the core > group of surgeons she trained I answer honestly (according to what I know > at the time). I have seen some unbelievable casts over the years and they > have all come from untrained centers. I have seen many children miss > their window to grow straight due to improperly applied casts using Risser > principles. Ive seen cast sores that are so deep the child is unable to > tolerate a series of casts for over a year as the wound must heal. > Leaving children with deformities they could have avoided. > I have stated that to apply proper ET a proper frame is needed. I have > stated that properly trimmed windows in front/back are essential to > prevent chest wall deformities & address rotation. I have stated that > according to the pioneer and other experienced ET docs that under arm > jackets are most effective for curves above T-8/9. I have stated > repeatedly that there are specific ET guidelines to be followed in order > for the block of EDF casts to be most effective. And most recently, I > stated that hands on training was more effective than a demonstration on a > video monitor. ISOP learned this the hard way as we spent a lot of money > doing this in the past and we realized that it wasnt as effective as hands > on (because most US docs learned only risser). > Believe me, I know exactly how scary it is to have a non EDF cast. My > daughter had them for many years before I was able to bring the pioneer to > SLC. > If ISOP knows that a new hospital is applying ET, has a frame, is trimming > correct windows, following ET principles, are experiencing positive > results and receives rave reviews from parents, Im the 1st to congratulate > them. If I read a parent has a child in cast with no windows, cast sores, > no frame , no training and/or arent following ET principles/guidelines > then Im a bit hesitant to congratulate as their child may not be getting > the best. That's all. Plain & simple. > There have been quite a few hospitals over the last 5yrs that have not > embraced ET w/ EDF casting (and have been invited to multiple ETP's)and > are now getting on board, so its only natural that I would ask families > going to some of these hospitals very specific questions in order to help > them....Not hurt them Catie. > Im perplexed on why you feel CAST isnt supportive of new hospitals taking > on ET. I strongly believe that pointing out the differences between > techniques and principles are helpful for people beginning their ET > journey. > I have pointed out good questions to ask about treatment in St. Louis and > Portland, so parents could find out for themselves. As far as Chicago is > concerned and Dr. H.? What exactly are you referring to? Chicago is > great and this continual dialogue about CAST not supporting Chicago is > false. > I hope you remain on CAST and this is resolved. If you no longer want to > be a part of CAST, you can remove yourself by unsubscribing. > >> Dr. Jaren R. is a pediatric orthopedic surgeon with Rocky Mountain >> Pediatric >> Orthopedics. Dr. R. graduated from University of Iowa College of >> Medicine, and >> went on to complete his orthopedic surgery residency there as >> well. He >> completed his fellowship in pediatric orthopedic surgery at Primary >> Children's >> Hospital/Shriners Hospital in Salt Lake City, Utah. >> His last name rhymes with Smiley. >> >> This is the doctor in question. The fact that he did his >> fellowship >> under Dr. >> Da in SLC, casted one of our friends children over a year ago with Dr. >> DA >> would >> qualify him as having hands on training. It is not my intent to post >> information like this to discount in anyway what you are doing. I do >> however >> find it sad and infuriating when I see parents come to this board, >> share >> their >> experience, get educated on the principles of ET/EDF and then be told >> that >> their >> doctor is not qualified to apply such casts.  Their is nothing >> scarier >> that >> thinking the person who just placed your childs cast is not qualified >> to >> do >> it. Instead of saying CONGRATULATIONS to your doctor and center for >> taking the >> effort to embrace this principle.  Although my original post truly >> didn't think >> it was this group that discouraged 2 families from casting in Denver, I >> now see >> I must have been sorely mistaken. It happened with a family in >> Portland >> & St. >> Louis. Dr. H in Chicago was said to have not embraced at one >> time. >> Good thing >> times have changed.  If this format is to share information and >> experience then >> why is everything I share chastised or picked apart with the exception >> of >> some >> trivial feel good story about my son and a football team. >> >> >> I have remained on this group because I still held out hope that >> maybe I >> could >> help one family as my Chicago sisters have helped me. I stayed at >> the >> request >> of my center who felt the families I have helped traverse >> the Shriners >> application process and initial cast day at our center was a benefit to >> both our >> surgeons and those families. After a year of participating though I >> can >> honestly say I am tiring of posting and being picked apart. I have >> more >> constructive things to do with my time and better ways to help the >> families at >> my center and other centers.  >>  Thanks to all the friends I have made in this journey. I wish >> this >> group the >> best in their endeavors.  >> >>   Catie,Cody(9) & 's(23mo)mom (in 5th cast 35*out of cast, >> 67* >> start @ >> 10mo) proudly at Chicago Shriners >> >> >> >> >> >> ________________________________ >> From: " heather@... " <heather@...> >> infantile scoliosis treatment >> Sent: Mon, November 15, 2010 1:52:58 PM >> Subject: Re: Denver & Canada >> >>  >> Oops. The doc in Denver that has had hands on is Dr. B. at the new Rocky >> Mtn Childrens Hospital at PSL...(Not Dr. S.) >> >>> Thanks for the info, Catie. >>> >>> F.Y.I.- the doc in SLC held a casting " demonstration " (not hands on >>> training)in Halifax, Nova Scotia. There were over 20 Canadian spine >>> surgeons there, with all 10 Canadian provinces represented. Its my >>> understanding that they were all very interested in learning the EDF >>> casting technique, given the high complication rates that all of them >>> have >>> experienced with growing rods and VEPTR’s. Its FABULOUS that >>> they are >>> interested in learning. I hope they are also interested in receiving >>> hands on experience. ISOP has learned that watching the EDF casting >>> process on a video monitor is not as effective as actual hands on >>> training. Many docs have only ever been exposed to Risser, so IMO hands >>> on is the way to go. Hopefully, more and more surgeons will become >>> experienced with hands on training and the early treatment principles >>> for >>> the treatment of progressive infantile scoliosis. >>> The doc is SLC will be in WI. this week to give a " hands on " training >>> tutorial on ET w/ Mehtas EDF, so WI.'s ET Program will now be on the >>> list. >>> Im not sure who Dr. R is...(?) I know Dr. E at Denver Childrens and can >>> say that they are applying ET without trimming a window in back for >>> rotation. They are also trimming a small round window in front. Nothing >>> like the widely trimmed chest expansion windows w/ rib flaps. I can >>> also >>> confirm that Dr. S. at the new Rocky Mtn Childrens Hospital at PSL >>> recently had hands on training, has a frame and will be applying >>> appropriate windows. >>> My goal in giving this info is help parents make the best decision on >>> how >>> to proceed in their childs care. Infants & children only have a window >>> of >>> time to grow straight gently & permanently and its best not to miss >>> that >>> window with an improperly applied cast. >>> Looks like the ET Movement is growing! Way to go SLC! >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>> I just got an email from a friend of mine who's daughter was casted >>>> last >>>> week in SLC. She was telling me about all the wonderful doctors and >>>> centers who have started casting after training with Dr. D in SLC. She >>>> said they had mentioned specifically the doctor in Denver, Dr.R. She >>>> said >>>> that Dr. D felt somehow parents were discouraged from casting in >>>> Denver >>>> due to lack of training which in his opinion couldn't be farther from >>>> the >>>> truth. She isn't a apart of this group and I told her I would be happy >>>> to >>>> post Dr. D's confidence in the doctors and centers in Denver. She said >>>> that another of our friends actually had their son casted in SLC with >>>> this >>>> doctor almost a year ago while he was doing yet another practicum in >>>> SLC. >>>> I just thought this might give the families who may be on the fence >>>> about >>>> casting in Denver the boost in confidence they need. Dr. D also >>>> mentioned >>>> he trained 22 Canadian doctors in Halifax. One from each province >>>> which >>>> is huge for our >>>> Canadian friends. >>>> >>>> I don't think it was specifically this group who may have discouraged >>>> these families, but thought it wouldn't hurt to put the positive out >>>> there. The doctors in SLC, Rochester, & Chicago are constantly sharing >>>> their facilities and expertise with other Orthopedic Surgeons who are >>>> expressing an interest in these kids. This year alone I have watched >>>> new >>>> centers and families join this group with great stories involving >>>> these >>>> very doctors. St. Louis, Lexington, Boston, Duke, Kansas City >>>> Childrens >>>> Mercy and Cincinnati just to name a few. Love to see these families >>>> getting the care they need closer to home! >>>> >>>> Sent from my iPhone >>>> >>>> >>>> >>> >>> >>> >> >> >> >> >> >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Parents can add doctors to the list themselves. Its not required that does it. heather@... wrote: >Just add to the list. > >> Catie, >>  >>  You are my girl, my teacher, my best friend across the miles, I truly >> feel that. You have bene there for me the year that we've both shared >> smiles and tears over phone, email, etc. I thank you for all your words, >> advice, and sincerity to each one on this group. You DO only try to help >> and educate others, you are truly, an angel to many of us. Thank you for >> your support and helping me get support for Dr. L. I was told he would >> be added to the list, but you are right, he is not. He has been our >> blessing for Drue. >>  >> Love you and your little men so much, Thank you from all of us!! >> >> and Jimmy >> Mommy and daddy to Grace, 10, Tryston, 5 >> Drue, 2 out of cast #2 >> 13* out of cast, down from 26*, started at 40* >> In second brace >> St. Louis Shriners Hospital >> >> >> >> >> From: Chad And Catie Diefenbaugh <chadandcatie@...> >> Subject: Cleansing >> infantile scoliosis treatment >> Date: Tuesday, November 16, 2010, 5:57 AM >> >> >>  >> >> >> >> >> >> >> I also stand firmly behind my original post which was meant to only say >> Hey Dr. DA said this was a good casting doctor. In the original email >> to me it further said that not every family can be casted is SLC, the >> doctors in Denver are good and Dr. DA said they should be trusted. I in >> no way doubt the information provided to me by another parent to be false >> and still stand behind the original post. >>  >> I am a passionate advocate for my child and all children dealing with >> this. Whether I like the parents or not I will always support the >> children. My years journey has taken me on a different path than what >> this group has to offer. I don't believe scaring new families can be >> hidden behind what Cotrel/Morel or Min Mehta pioneered. I stand behind >> my thoughts that the Growth as a Corrective force video should be easily >> accesible for new families and I am glad that Amil has made it available >> to families on YOU TUBE.  You should be too. ARISE is defunct and has >> been since 2008. There is no money that can go their way anymore >> and having this available to all is in the best interest of ISOP and >> CAST. It is an education tool not a fundraiser. >>  >> St. Louis is a wonderful casting center and Dr. L received hands on >> training from Dr. S in Chicago. He has casted children with great >> success. He should be embraced. Contact his office through St. Louis >> Children's. Add him to the group. You told you would months >> ago.    >>  >> You seek to educate me in every reply you send my way. I am >> educated. I have traveled this road for a year seen friends come and go >> from this group and never sought to diminish your imprint on casting.  I >> don't need to be reminded your journey is greater than mine. I am >> living this right now. I understand your pain as a mother. I don't >> believe your sacrifice or that of any of us gives Carte Blanche to be >> dismissive or mean. I have stopped the posts from streaming to my >> inbox.  If you would like to continue further dialogue off post, I >> welcome it. >> >> Thanks to my girls for all the support. You guys are so mother hen it >> made me smile! This is a good dialogue, cleansing. >>  Catie,Cody(9) & 's(23mo)mom (in 5th cast 35*out of cast, 67* start >> @ 10mo) proudly at Chicago Shriners >> >> >> >> >> >> >> From: " heather@... " <heather@...> >> infantile scoliosis treatment >> Sent: Mon, November 15, 2010 11:35:48 PM >> Subject: Re: Denver & Canada >> >>  >> >> Catie, >> When did I question Dr. R specifically? I did recently have questions >> about a hosp in Denver because as far as I know, the correct windows arent >> being trimmed and a few Denver families have expressed that their block of >> casts were removed prematurely. Thanks for the CV, but to my knowledge >> this is the 1st mention of Dr. R (?) doing a partial residency at Shriners >> Intermountain and certainly the 1st time Ive heard that he casted your >> friends child. Perhaps, I missed an earlier post on this? >> Im sorry you are infuriated by my posts. I only try to make the >> differences between casting techniques and principles so families can >> properly advocate and develop the best care plan for their child, who may >> only have a small window to benefit. I have been in the OR with the >> pioneer for over 25 EDf applications and only share what I have learned >> from over 8 yrs of Et experience. I can tell you that I am happy that >> parents find solid info here on ET principles & EDF technique, but I have >> never stated to a parent that the doc they have chosen is unqualified. If >> parents ask if the doc has been trained by the pioneer or one of the core >> group of surgeons she trained I answer honestly (according to what I know >> at the time). I have seen some unbelievable casts over the years and they >> have all come from untrained centers. I have seen many children miss >> their window to grow straight due to improperly applied casts using Risser >> principles. Ive seen cast sores that are so deep the child is unable to >> tolerate a series of casts for over a year as the wound must heal. >> Leaving children with deformities they could have avoided. >> I have stated that to apply proper ET a proper frame is needed. I have >> stated that properly trimmed windows in front/back are essential to >> prevent chest wall deformities & address rotation. I have stated that >> according to the pioneer and other experienced ET docs that under arm >> jackets are most effective for curves above T-8/9. I have stated >> repeatedly that there are specific ET guidelines to be followed in order >> for the block of EDF casts to be most effective. And most recently, I >> stated that hands on training was more effective than a demonstration on a >> video monitor. ISOP learned this the hard way as we spent a lot of money >> doing this in the past and we realized that it wasnt as effective as hands >> on (because most US docs learned only risser). >> Believe me, I know exactly how scary it is to have a non EDF cast. My >> daughter had them for many years before I was able to bring the pioneer to >> SLC. >> If ISOP knows that a new hospital is applying ET, has a frame, is trimming >> correct windows, following ET principles, are experiencing positive >> results and receives rave reviews from parents, Im the 1st to congratulate >> them. If I read a parent has a child in cast with no windows, cast sores, >> no frame , no training and/or arent following ET principles/guidelines >> then Im a bit hesitant to congratulate as their child may not be getting >> the best. That's all. Plain & simple. >> There have been quite a few hospitals over the last 5yrs that have not >> embraced ET w/ EDF casting (and have been invited to multiple ETP's)and >> are now getting on board, so its only natural that I would ask families >> going to some of these hospitals very specific questions in order to help >> them....Not hurt them Catie. >> Im perplexed on why you feel CAST isnt supportive of new hospitals taking >> on ET. I strongly believe that pointing out the differences between >> techniques and principles are helpful for people beginning their ET >> journey. >> I have pointed out good questions to ask about treatment in St. Louis and >> Portland, so parents could find out for themselves. As far as Chicago is >> concerned and Dr. H.? What exactly are you referring to? Chicago is >> great and this continual dialogue about CAST not supporting Chicago is >> false. >> I hope you remain on CAST and this is resolved. If you no longer want to >> be a part of CAST, you can remove yourself by unsubscribing. >> >>> Dr. Jaren R. is a pediatric orthopedic surgeon with Rocky Mountain >>> Pediatric >>> Orthopedics. Dr. R. graduated from University of Iowa College of >>> Medicine, and >>> went on to complete his orthopedic surgery residency there as >>> well. He >>> completed his fellowship in pediatric orthopedic surgery at Primary >>> Children's >>> Hospital/Shriners Hospital in Salt Lake City, Utah. >>> His last name rhymes with Smiley. >>> >>> This is the doctor in question. The fact that he did his >>> fellowship >>> under Dr. >>> Da in SLC, casted one of our friends children over a year ago with Dr. >>> DA >>> would >>> qualify him as having hands on training. It is not my intent to post >>> information like this to discount in anyway what you are doing. I do >>> however >>> find it sad and infuriating when I see parents come to this board, >>> share >>> their >>> experience, get educated on the principles of ET/EDF and then be told >>> that >>> their >>> doctor is not qualified to apply such casts.  Their is nothing >>> scarier >>> that >>> thinking the person who just placed your childs cast is not qualified >>> to >>> do >>> it. Instead of saying CONGRATULATIONS to your doctor and center for >>> taking the >>> effort to embrace this principle.  Although my original post truly >>> didn't think >>> it was this group that discouraged 2 families from casting in Denver, I >>> now see >>> I must have been sorely mistaken. It happened with a family in >>> Portland >>> & St. >>> Louis. Dr. H in Chicago was said to have not embraced at one >>> time. >>> Good thing >>> times have changed.  If this format is to share information and >>> experience then >>> why is everything I share chastised or picked apart with the exception >>> of >>> some >>> trivial feel good story about my son and a football team. >>> >>> >>> I have remained on this group because I still held out hope that >>> maybe I >>> could >>> help one family as my Chicago sisters have helped me. I stayed at >>> the >>> request >>> of my center who felt the families I have helped traverse >>> the Shriners >>> application process and initial cast day at our center was a benefit to >>> both our >>> surgeons and those families. After a year of participating though I >>> can >>> honestly say I am tiring of posting and being picked apart. I have >>> more >>> constructive things to do with my time and better ways to help the >>> families at >>> my center and other centers.  >>>  Thanks to all the friends I have made in this journey. I wish >>> this >>> group the >>> best in their endeavors.  >>> >>>   Catie,Cody(9) & 's(23mo)mom (in 5th cast 35*out of cast, >>> 67* >>> start @ >>> 10mo) proudly at Chicago Shriners >>> >>> >>> >>> >>> >>> ________________________________ >>> From: " heather@... " <heather@...> >>> infantile scoliosis treatment >>> Sent: Mon, November 15, 2010 1:52:58 PM >>> Subject: Re: Denver & Canada >>> >>>  >>> Oops. The doc in Denver that has had hands on is Dr. B. at the new Rocky >>> Mtn Childrens Hospital at PSL...(Not Dr. S.) >>> >>>> Thanks for the info, Catie. >>>> >>>> F.Y.I.- the doc in SLC held a casting " demonstration " (not hands on >>>> training)in Halifax, Nova Scotia. There were over 20 Canadian spine >>>> surgeons there, with all 10 Canadian provinces represented. Its my >>>> understanding that they were all very interested in learning the EDF >>>> casting technique, given the high complication rates that all of them >>>> have >>>> experienced with growing rods and VEPTR’s. Its FABULOUS that >>>> they are >>>> interested in learning. I hope they are also interested in receiving >>>> hands on experience. ISOP has learned that watching the EDF casting >>>> process on a video monitor is not as effective as actual hands on >>>> training. Many docs have only ever been exposed to Risser, so IMO hands >>>> on is the way to go. Hopefully, more and more surgeons will become >>>> experienced with hands on training and the early treatment principles >>>> for >>>> the treatment of progressive infantile scoliosis. >>>> The doc is SLC will be in WI. this week to give a " hands on " training >>>> tutorial on ET w/ Mehtas EDF, so WI.'s ET Program will now be on the >>>> list. >>>> Im not sure who Dr. R is...(?) I know Dr. E at Denver Childrens and can >>>> say that they are applying ET without trimming a window in back for >>>> rotation. They are also trimming a small round window in front. Nothing >>>> like the widely trimmed chest expansion windows w/ rib flaps. I can >>>> also >>>> confirm that Dr. S. at the new Rocky Mtn Childrens Hospital at PSL >>>> recently had hands on training, has a frame and will be applying >>>> appropriate windows. >>>> My goal in giving this info is help parents make the best decision on >>>> how >>>> to proceed in their childs care. Infants & children only have a window >>>> of >>>> time to grow straight gently & permanently and its best not to miss >>>> that >>>> window with an improperly applied cast. >>>> Looks like the ET Movement is growing! Way to go SLC! >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>>> I just got an email from a friend of mine who's daughter was casted >>>>> last >>>>> week in SLC. She was telling me about all the wonderful doctors and >>>>> centers who have started casting after training with Dr. D in SLC. She >>>>> said they had mentioned specifically the doctor in Denver, Dr.R. She >>>>> said >>>>> that Dr. D felt somehow parents were discouraged from casting in >>>>> Denver >>>>> due to lack of training which in his opinion couldn't be farther from >>>>> the >>>>> truth. She isn't a apart of this group and I told her I would be happy >>>>> to >>>>> post Dr. D's confidence in the doctors and centers in Denver. She said >>>>> that another of our friends actually had their son casted in SLC with >>>>> this >>>>> doctor almost a year ago while he was doing yet another practicum in >>>>> SLC. >>>>> I just thought this might give the families who may be on the fence >>>>> about >>>>> casting in Denver the boost in confidence they need. Dr. D also >>>>> mentioned >>>>> he trained 22 Canadian doctors in Halifax. One from each province >>>>> which >>>>> is huge for our >>>>> Canadian friends. >>>>> >>>>> I don't think it was specifically this group who may have discouraged >>>>> these families, but thought it wouldn't hurt to put the positive out >>>>> there. The doctors in SLC, Rochester, & Chicago are constantly sharing >>>>> their facilities and expertise with other Orthopedic Surgeons who are >>>>> expressing an interest in these kids. This year alone I have watched >>>>> new >>>>> centers and families join this group with great stories involving >>>>> these >>>>> very doctors. St. Louis, Lexington, Boston, Duke, Kansas City >>>>> Childrens >>>>> Mercy and Cincinnati just to name a few. Love to see these families >>>>> getting the care they need closer to home! >>>>> >>>>> Sent from my iPhone >>>>> >>>>> >>>>> >>>> >>>> >>>> >>> >>> >>> >>> >>> >>> >> >> >> >> >> >> >> >> >> >> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 I'm learning more and more through the posts that come through here but I was hoping someone had some links to some studies about what really happens during cleanses? I know the curezone forums has the debates about cleanses but I'm a parent and don't have the time to go searching through threads and validating the information in each one. Anyone can publish a book these days, so I'm hesitant to give my money to something that isn't medically proven. I'm not trying to start a debate. I just need to figure out the best path to follow for my gallbladder issues. Had my first one while 6 weeks pregnant with my son (about 15 months ago) and had another one 2 months ago. I was eating a lot of animal fats and dairy (it was Christmastime, after all ) so I figure diet has something to do with it. I'm trying to learn the best way to eat to manage this. I'm not doing a cleanse right now as I'm breastfeeding and will probably do so for the next 2 years if not more, but I want to learn more about it so that if/when I am ready I am as knowledgeable as I can be about it. I just keep thinking back to the Penn & Teller Bullshit episode about colon cleansing so I'm skeptical. Janelle Quote Link to comment Share on other sites More sharing options...
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