Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 I am definitely not stating that any of these types of doctors are involved in early treatment. In fact, I suspect most if not all of them are the opposite and are kind-hearted and sincerely want what is best for our kids and grandkids, and are willing to do whatever it takes to get it done. ***You are so right on this, Shara. The docs that are treating our kids early only have the best intentions for our little ones. That’s why they have embraced ET, when most have ignored it and/or have put forth no effort to even learn about it. These ET docs deserve a lot of credit and support. HRH Re: doc's names Hi all --- I wasn't going to say anything since I am only " grammy " to Devyn and not mom -- but I feel I must say something. Although I understand why some parents have stated they are unhappy about not naming the docs here, I hope you can understand it from the other side. I am a medical transcriptionist and have worked directly with a number of doctors in all different fields of medicine for many years. Doctors as a whole are fine human beings, but there are also doctors out there who have huge egos who think they are " God's gift to everyone. " If they even THINK someone has said " anything " out of line about them, they take great offense, even if its true!! Over the years I have seen many office and hospital employees severely reprimanded or fired if anything is said against the docs. -- And I do realize some of you may take these comments as bashing which is definitely NOT my intention -- but we all know some of these doctors (after all they are just human beings like the rest of us and some have personality issues just like the rest of us). If you haven't run into any of them yet, your're lucky. And I am definitely not stating that any of these types of doctors are involved in early treatment. In fact, I suspect most if not all of them are the opposite and are kind-hearted and sincerely want what is best for our kids and grandkids, and are willing to do whatever it takes to get it done. The list of hospitals and doctors is on the ISOP site and if you want specific information or referrals you can privately email the parents whose kids are being treated at specific hospitals, or ask that anyone going to specific hospitals email you with more information. I really do understand that you want to know which doctors are the best and if they are definitely following the Mehta method for early treatment or doing it somewhat on their own. The best advise I can give you is to order the DVD, watch it, become educated about it, and then question the facility or doctor you are considering going to and ask specific questions. The more educated you are the better you will be able to ensure your kids are getting the very best of care. At this stage of the game YOU are the one who will ultimately decide what is best for YOUR child - not anyone else including the doctors!!!! You absolutely need to learn as much as you can. Some doctors may take offense to this, and I can't speak for anyone else, but personally I WOULD NOT WANT a doctor treating my grandson who did not want my family to be educated about his condition and who would be offended if we asked a lot of " why questions. " Like I said, please understand where is coming from on this. I have seen how some doctors react to such things and some of them are just plain being childish and some have those huge egos to feed. Many times over the years some docs I have just had to treat with kid gloves and basically " bow at their feet. " Fortunately there are a lot of docs out there that wouldn't care at all about this but we have to take care with the docs that do. All it would take is one doctor that is upset to cause some major problems for ISOP and early treatment and this certainly would not be good for any of our kids. I hate to think of where Devyn would be now had he not gotten a great doc and had we not found ISOP. Please, please stop all this bickering back and forth. There is a way to work through this and still have the support that is so desperately needed for these very special kiddos and their families!!! Shara, Grammy to Devyn, 2 years old. > > Well said Steph. > Ditto for me. > ((Hug)) ((Hug)) to everyone! > > doc's names > > > Hi All.... > > > > I'm jumping into this conversation a little late in the game.... And with tears in my eyes. I've been a member about a year now and have found tremendous support here. It saddens me that we are talking about " unsubscribing " and " removing " members and it seems like we are starting to attack each other. I think we are all concerned moms in a similar boat looking, sometimes in desperation, for some guidance. I think we found it here. I wish we also could mention names freely and I believe that said in a previous post that we could provide new moms with the names and contact info for Mehta docs in their area in order to save them time. I don't think it has ever been said that we could not vent/complain/make negative comments about our experiences. For example, many of you know that I take Noelle to Rochester for casting.... I could say something like, " Noelle's doc at Rochester really upset me this time because..... " without saying his name. Many of us already know who those docs are and anyone who also sees a doc at that facility could e-mail me off-line for more details if they wanted to know. I agree that we need to agree to disagree.... And, as we become more established, perhaps these rules will change. While it may take me an extra minute or two right now to remember to revise the way I write my posts, I think in a few days/weeks it will become second nature. I also don't think that if a member is speaking very positivley about their experience and a mom asks simply " Who do you see? " And we supply the contact info. again... Well, I doubt that anyone would be kicked off for that. I count on all of you for support and guidance. I read every post, even if I don't respond to them all. I have prayed for all of you and have been prayed for. I have laughed at some of your stories and shed tears over others. When I come to this group, I find hope... It has been some days since I have felt that. I just wanted to say that regardless of our differences about the rules that are currently in place, I hope that we can respect them and get back to what this group is really about.... I really miss it!!!! > > With Hope, Steph > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 And believe me --- news (especially unfavorable news) travels very quickly in the medical community!!!! **You got that right! HRH Re: Re: doc's names Ethelyn -- I would hope the docs would not quit using the Mehta method, especially those that have been doing it and seeing such good results -- however -- some docs are an odd lot and many absolutely don't want to participate in any kind of new treatment, etc. They believe the old way is the best and only way to do it which unfortunately does not help most of our kids with scoli. That is why we have to treat them so carefully!!! We cannot afford to offend any of the perspective docs that might be interested in helping our kids with the Mehta method. And believe me --- news (especially unfavorable news) travels very quickly in the medical community!!!! Shara [infantile_scoliosi s] doc's names > > > Hi All.... > > > > I'm jumping into this conversation a little late in the game.... And with tears in my eyes. I've been a member about a year now and have found tremendous support here. It saddens me that we are talking about " unsubscribing " and " removing " members and it seems like we are starting to attack each other. I think we are all concerned moms in a similar boat looking, sometimes in desperation, for some guidance. I think we found it here. I wish we also could mention names freely and I believe that said in a previous post that we could provide new moms with the names and contact info for Mehta docs in their area in order to save them time. I don't think it has ever been said that we could not vent/complain/ make negative comments about our experiences. For example, many of you know that I take Noelle to Rochester for casting.... I could say something like, " Noelle's doc at Rochester really upset me this time because..... " without saying his name. Many of us already know who those docs are and anyone who also sees a doc at that facility could e-mail me off-line for more details if they wanted to know. I agree that we need to agree to disagree.... And, as we become more established, perhaps these rules will change. While it may take me an extra minute or two right now to remember to revise the way I write my posts, I think in a few days/weeks it will become second nature. I also don't think that if a member is speaking very positivley about their experience and a mom asks simply " Who do you see? " And we supply the contact info. again... Well, I doubt that anyone would be kicked off for that. I count on all of you for support and guidance. I read every post, even if I don't respond to them all. I have prayed for all of you and have been prayed for. I have laughed at some of your stories and shed tears over others. When I come to this group, I find hope... It has been some days since I have felt that. I just wanted to say that regardless of our differences about the rules that are currently in place, I hope that we can respect them and get back to what this group is really about.... I really miss it!!!! > > With Hope, Steph > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 Thanks, Shara! I’ll try and keep you all updated with Livs progress while we are gone. Send us your strength on the 2nd. HRH Re: Eiddelyn update -- We will definitely be thinking of you both!! Tell Liv we said hi!!! I am going to be in Denver on Sep 5 & 6 for a dollhouse show so we'll miss each other but I'll be thinking of you. Let us know if we can do anything. Hugs Shara [infantile_scoliosi s] Need advice on when to cast Just got a call from the same day surgery scheduler to let us know when Hadley's next casting apt will take place. She was casted last July 1st with her 2nd cast. So, i figured in Sept. would be the next one. Turns out our Hosp. will be closed Nov and December so they want to cast everybody in Oct so they will hopefully make it till Jan. until the hospital opens. Makes sense, but it will be 3 months in the cast if we wait until Oct 1st! Her first cast, she went 2 1/2 months in cast. The scheduler had her down for Sept. 16th for getting her 3rd cast. But i said, theres no way she'll make it till January if we cast her in September. Then she informed me that is why they plan on recasting her again Oct. 21st. That would mean she would only be in her cast about 1 month until we have to change it. I was a little worried about that so she said we could try and see if we can wait till Oct 21st. But then that would mean she will be in this cast for 3 1/2 months. Is that possible? Seems long to me. She needs to know at the end of the wk because she is holding the dates for us. We dont know what to do. I dont think Hadley will be able to make it that long, but i dont like the idea of her getting casted so soon after they put the 3rd cast on her. Im worried about loss of correction since its such a short time in the cast before they take it off and also, I dont want Hadley to have to go through that twice so soon. Any advice? What would you all do? Has any of your children made it 3 1/2 months in a cast? Anything would be great! Thanks and sorry for the long explanation! Shauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 Thanks, Shara. Yes, that would be great. We need to provide ET info to the rural areas, as well....... Have a nice day with your family. HRH > This sounds great, !! I'll compile a list (after we get back next > week) of peds here and in some of the outlying areas. Let me know if there > is anything else I can do from this end. > > Shara > Pediatrician Awareness Program > > > Morning! > ISOP would like to begin our Pediatrician Awareness/Outreach Program in > 2009. As you know, pediatricians are key in diagnosing and referring > young patients with prog. scoliosis, early for treatment. Our idea is to > send the pediatric community a packet of ET info, which will include a > simple, ET Resource Manual with infantile scoliosis diagnostic tools > (what > to look for, etc...), a list of qualified ET Centers, an awareness > poster, > published articles, DVD, brochures, etc.....And, the link to the > Physicians Only Forum that we are in the midst of developing..... > If you know of pediatricians in your area that should receive an ET > awareness packet and be included on our ETP invitation list for 2009, > please provide to me their contact details at > heather@... , so we can get this program rolling! > Also, if you have any ideas regarding the Pediatrician Awareness Program > and how to make it most effective, please let me know. > Thanks! > HRH > > > > Quote Link to comment Share on other sites More sharing options...
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