Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Kathy, good ideas. I am trying for the metabolic unit -Dr. Steiner, at OHSU and I would like for some papers to be written (or find them if they have) on the fresh muscle biopsy issue. Also, couldn't these mito specialists everyone wants to see share their information, expertise with whole groups of Dr.s (is that what the seminars have been about?) in other areas of the country so we wouldn't all have to try and get to just a few special Dr.s? Would getting our hands on the seminars papers and videos help us to share the " how-tos " with our Dr. s so we could do at least all preliminary testing at home or close to it? If this is now known to be such a common disorder I hope the medical community will get with it and give everyone more help. S. Doctors > > >Think we can begin to " grow " a few more sites? I'm thinking that Chicago, >Texas (Dallas or Houston?), Portland or Seattle, LA, Boston would be good >($180 round trip flights!). Have there been any papers written regarding >the prevalence of correct diagnosis using fresh vs. frozen samples? Perhaps >there should be so that the average MD and pediatrician would know how >important it is. > >Talk to the researchers and ask them to write one!! > >Kathy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Kathy, good ideas. I am trying for the metabolic unit -Dr. Steiner, at OHSU and I would like for some papers to be written (or find them if they have) on the fresh muscle biopsy issue. Also, couldn't these mito specialists everyone wants to see share their information, expertise with whole groups of Dr.s (is that what the seminars have been about?) in other areas of the country so we wouldn't all have to try and get to just a few special Dr.s? Would getting our hands on the seminars papers and videos help us to share the " how-tos " with our Dr. s so we could do at least all preliminary testing at home or close to it? If this is now known to be such a common disorder I hope the medical community will get with it and give everyone more help. S. Doctors > > >Think we can begin to " grow " a few more sites? I'm thinking that Chicago, >Texas (Dallas or Houston?), Portland or Seattle, LA, Boston would be good >($180 round trip flights!). Have there been any papers written regarding >the prevalence of correct diagnosis using fresh vs. frozen samples? Perhaps >there should be so that the average MD and pediatrician would know how >important it is. > >Talk to the researchers and ask them to write one!! > >Kathy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Kathy, good ideas. I am trying for the metabolic unit -Dr. Steiner, at OHSU and I would like for some papers to be written (or find them if they have) on the fresh muscle biopsy issue. Also, couldn't these mito specialists everyone wants to see share their information, expertise with whole groups of Dr.s (is that what the seminars have been about?) in other areas of the country so we wouldn't all have to try and get to just a few special Dr.s? Would getting our hands on the seminars papers and videos help us to share the " how-tos " with our Dr. s so we could do at least all preliminary testing at home or close to it? If this is now known to be such a common disorder I hope the medical community will get with it and give everyone more help. S. Doctors > > >Think we can begin to " grow " a few more sites? I'm thinking that Chicago, >Texas (Dallas or Houston?), Portland or Seattle, LA, Boston would be good >($180 round trip flights!). Have there been any papers written regarding >the prevalence of correct diagnosis using fresh vs. frozen samples? Perhaps >there should be so that the average MD and pediatrician would know how >important it is. > >Talk to the researchers and ask them to write one!! > >Kathy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 and Kathy- All of these mito specialists write articles for journals. There is a great deal of information available. It is my understanding that there is a full day of talks scheduled for doctors at the UMDF conference next summer. The problem seems to be getting the docs to read the stuff or go to the conferences. They are all busy, but I think there are things we can do to help. The UMDF website has a huge list of articles and the information needed to look them up in a medical library or send for them. I sent for many of these articles and have printed many abstracts of articles for my own use. I had these copied and have put together six notebooks for my MDA neuro, so it will be easier for him to find the kind of information he is seeking. Each notebook contains info on one thing, such as mito genetics and everything in it is a certain color. This way when I give him additional material, he knows what notebook to put it in by the color. He was thrilled with them. Laurie > Kathy, good ideas. I am trying for the metabolic unit -Dr. Steiner, at OHSU > and I would like for some papers to be written (or find them if they have) > on the fresh muscle biopsy issue. Also, couldn't these mito specialists > everyone wants to see share their information, expertise with whole groups > of Dr.s (is that what the seminars have been about?) in other areas of the > country so we wouldn't all have to try and get to just a few special Dr.s? > Would getting our hands on the seminars papers and videos help us to share > the " how-tos " with our Dr. s so we could do at least all preliminary testing > at home or close to it? If this is now known to be such a common disorder I > hope the medical community will get with it and give everyone more help. > S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 and Kathy- All of these mito specialists write articles for journals. There is a great deal of information available. It is my understanding that there is a full day of talks scheduled for doctors at the UMDF conference next summer. The problem seems to be getting the docs to read the stuff or go to the conferences. They are all busy, but I think there are things we can do to help. The UMDF website has a huge list of articles and the information needed to look them up in a medical library or send for them. I sent for many of these articles and have printed many abstracts of articles for my own use. I had these copied and have put together six notebooks for my MDA neuro, so it will be easier for him to find the kind of information he is seeking. Each notebook contains info on one thing, such as mito genetics and everything in it is a certain color. This way when I give him additional material, he knows what notebook to put it in by the color. He was thrilled with them. Laurie > Kathy, good ideas. I am trying for the metabolic unit -Dr. Steiner, at OHSU > and I would like for some papers to be written (or find them if they have) > on the fresh muscle biopsy issue. Also, couldn't these mito specialists > everyone wants to see share their information, expertise with whole groups > of Dr.s (is that what the seminars have been about?) in other areas of the > country so we wouldn't all have to try and get to just a few special Dr.s? > Would getting our hands on the seminars papers and videos help us to share > the " how-tos " with our Dr. s so we could do at least all preliminary testing > at home or close to it? If this is now known to be such a common disorder I > hope the medical community will get with it and give everyone more help. > S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 and Kathy- All of these mito specialists write articles for journals. There is a great deal of information available. It is my understanding that there is a full day of talks scheduled for doctors at the UMDF conference next summer. The problem seems to be getting the docs to read the stuff or go to the conferences. They are all busy, but I think there are things we can do to help. The UMDF website has a huge list of articles and the information needed to look them up in a medical library or send for them. I sent for many of these articles and have printed many abstracts of articles for my own use. I had these copied and have put together six notebooks for my MDA neuro, so it will be easier for him to find the kind of information he is seeking. Each notebook contains info on one thing, such as mito genetics and everything in it is a certain color. This way when I give him additional material, he knows what notebook to put it in by the color. He was thrilled with them. Laurie > Kathy, good ideas. I am trying for the metabolic unit -Dr. Steiner, at OHSU > and I would like for some papers to be written (or find them if they have) > on the fresh muscle biopsy issue. Also, couldn't these mito specialists > everyone wants to see share their information, expertise with whole groups > of Dr.s (is that what the seminars have been about?) in other areas of the > country so we wouldn't all have to try and get to just a few special Dr.s? > Would getting our hands on the seminars papers and videos help us to share > the " how-tos " with our Dr. s so we could do at least all preliminary testing > at home or close to it? If this is now known to be such a common disorder I > hope the medical community will get with it and give everyone more help. > S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Hey, Laurie, wonderful! I will try to follow suit. How smart of you. I will also inform my Dr. of the UMDF conferance and hope he can attend. S. Re: Doctors > > > and Kathy- > >All of these mito specialists write articles for journals. There is a great deal of information >available. It is my understanding that there is a full day of talks scheduled for doctors at the UMDF >conference next summer. The problem seems to be getting the docs to read the stuff or go to the >conferences. They are all busy, but I think there are things we can do to help. The UMDF website has a >huge list of articles and the information needed to look them up in a medical library or send for them. I >sent for many of these articles and have printed many abstracts of articles for my own use. I had these >copied and have put together six notebooks for my MDA neuro, so it will be easier for him to find the >kind of information he is seeking. Each notebook contains info on one thing, such as mito genetics and >everything in it is a certain color. This way when I give him additional material, he knows what notebook >to put it in by the color. He was thrilled with them. > >Laurie > >> Kathy, good ideas. I am trying for the metabolic unit -Dr. Steiner, at OHSU >> and I would like for some papers to be written (or find them if they have) >> on the fresh muscle biopsy issue. Also, couldn't these mito specialists >> everyone wants to see share their information, expertise with whole groups >> of Dr.s (is that what the seminars have been about?) in other areas of the >> country so we wouldn't all have to try and get to just a few special Dr.s? >> Would getting our hands on the seminars papers and videos help us to share >> the " how-tos " with our Dr. s so we could do at least all preliminary testing >> at home or close to it? If this is now known to be such a common disorder I >> hope the medical community will get with it and give everyone more help. >> S. > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Laurie, What an excellent idea! We have a wonderful, caring, fantastic, devoted (can you tell I like him!) pediatrician. He has a genetics background but the world of mitochondrial disease is pretty much unexplored waters to him. He has *always* been SO receptive to anything I've asked or shared with him (I could ask him if we could try swamp root for and his comment would be " Bring me the documentation on it " ...) so I know he would love anything I could give him. I just wonder how I might present something as " big " as a notebook (as opposed to an abstract here and there). I just wouldn't want to insinuate that I don't think he knows *anything* about it. How did you do it? Again, I am so impressed - what a fantastic idea! If you can think of any tips on getting started (what sections you set up, etc), I would love to hear them as I'm certain others would too! Did you make notebooks for yourself as well? Thanks for sharing this! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Laurie, What an excellent idea! We have a wonderful, caring, fantastic, devoted (can you tell I like him!) pediatrician. He has a genetics background but the world of mitochondrial disease is pretty much unexplored waters to him. He has *always* been SO receptive to anything I've asked or shared with him (I could ask him if we could try swamp root for and his comment would be " Bring me the documentation on it " ...) so I know he would love anything I could give him. I just wonder how I might present something as " big " as a notebook (as opposed to an abstract here and there). I just wouldn't want to insinuate that I don't think he knows *anything* about it. How did you do it? Again, I am so impressed - what a fantastic idea! If you can think of any tips on getting started (what sections you set up, etc), I would love to hear them as I'm certain others would too! Did you make notebooks for yourself as well? Thanks for sharing this! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Laurie, Where do you find the stuff for these folders? That is a great idea! I wish I'd thought of it a few months ago, it would have saved the trouble of telling numerous Drs the same story over and over and over...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Hi List! Somehow I did not recieve or deleted the post about notebooks or folders for Mito Kids. Subject was: (MITO) DOCTORS Could someone send me the post? It sounded like everyone felt this was a wonderful idea and I would love to read what that mom is doing! Thanks! Shirley Ped. nurse to Calley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 In a message dated 07/28/1999 4:02:15 PM Eastern Daylight Time, lfitzger@... writes: > The UMDF website has a > huge list of articles and the information needed to look them up in a > medical library or send for them. I > sent for many of these articles and have printed many abstracts of articles > for my own use. And speaking of UMDF, has anyone seen the latest (Summer 1999) issue of the Mitochondrial News? The cover story has to do with the hoops that we often have to jump (referrals, insurance woes, etc.) on the path to a biopsy. I haven't read it all yet, and probably won't try to read the whoe thing till after my surgery on Friday, as any reading except for on-screen is very difficult now. Sheryl Cohen wrote the article, and thanks Janice West for helping her get the info. together, so it should be a pretty balanced effort by any standard! the Elder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 In a message dated 07/28/1999 4:02:15 PM Eastern Daylight Time, lfitzger@... writes: > The UMDF website has a > huge list of articles and the information needed to look them up in a > medical library or send for them. I > sent for many of these articles and have printed many abstracts of articles > for my own use. And speaking of UMDF, has anyone seen the latest (Summer 1999) issue of the Mitochondrial News? The cover story has to do with the hoops that we often have to jump (referrals, insurance woes, etc.) on the path to a biopsy. I haven't read it all yet, and probably won't try to read the whoe thing till after my surgery on Friday, as any reading except for on-screen is very difficult now. Sheryl Cohen wrote the article, and thanks Janice West for helping her get the info. together, so it should be a pretty balanced effort by any standard! the Elder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 In a message dated 07/28/1999 4:02:15 PM Eastern Daylight Time, lfitzger@... writes: > The UMDF website has a > huge list of articles and the information needed to look them up in a > medical library or send for them. I > sent for many of these articles and have printed many abstracts of articles > for my own use. And speaking of UMDF, has anyone seen the latest (Summer 1999) issue of the Mitochondrial News? The cover story has to do with the hoops that we often have to jump (referrals, insurance woes, etc.) on the path to a biopsy. I haven't read it all yet, and probably won't try to read the whoe thing till after my surgery on Friday, as any reading except for on-screen is very difficult now. Sheryl Cohen wrote the article, and thanks Janice West for helping her get the info. together, so it should be a pretty balanced effort by any standard! the Elder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Just wanted to let everybody know that we had a doctor here in Michigan at the University who was seeing mito kids and trying to develop a noninvasive test for mito. When I last called for an appt. I was told he was no longer seeing mito folks--he needed help because he was too busy and couldn't find any other doctors to come to this area who were interested in the field. Then I heard he retired. Personally I think his test didn't work so he gave up. So we see Dr. Cohen for the first time next month. Only a 3 hour drive for us. Anyway, I think the need is there for more doctors, I'm just not sure the incentive is as great. Tho' I can't understand why they wouldn't want to treat the cutest kids in the world!! , Mom to Adelaine -- The 's Ann Arbor, MI j-cooper@... http://www.mich.com/~jaj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Just wanted to let everybody know that we had a doctor here in Michigan at the University who was seeing mito kids and trying to develop a noninvasive test for mito. When I last called for an appt. I was told he was no longer seeing mito folks--he needed help because he was too busy and couldn't find any other doctors to come to this area who were interested in the field. Then I heard he retired. Personally I think his test didn't work so he gave up. So we see Dr. Cohen for the first time next month. Only a 3 hour drive for us. Anyway, I think the need is there for more doctors, I'm just not sure the incentive is as great. Tho' I can't understand why they wouldn't want to treat the cutest kids in the world!! , Mom to Adelaine -- The 's Ann Arbor, MI j-cooper@... http://www.mich.com/~jaj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Just wanted to let everybody know that we had a doctor here in Michigan at the University who was seeing mito kids and trying to develop a noninvasive test for mito. When I last called for an appt. I was told he was no longer seeing mito folks--he needed help because he was too busy and couldn't find any other doctors to come to this area who were interested in the field. Then I heard he retired. Personally I think his test didn't work so he gave up. So we see Dr. Cohen for the first time next month. Only a 3 hour drive for us. Anyway, I think the need is there for more doctors, I'm just not sure the incentive is as great. Tho' I can't understand why they wouldn't want to treat the cutest kids in the world!! , Mom to Adelaine -- The 's Ann Arbor, MI j-cooper@... http://www.mich.com/~jaj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 , When is your appt with Dr Cohen? We will be coming in from Florida to Cleveland on August 10th--seeing the doc on the 11th and having the biopsy on the 12th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 , When is your appt with Dr Cohen? We will be coming in from Florida to Cleveland on August 10th--seeing the doc on the 11th and having the biopsy on the 12th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 In a message dated 7/28/99 11:34:24 PM Eastern Daylight Time, j-cooper@... writes: > Tho' I can't understand why they wouldn't want to treat the > cutest kids in the world!! > I'll second THAT! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 , Another thing that we do is keep a notebook on Caitlin with all the important stuff. I include recent significant test results as well as evaluations. I also include any summaries that have been written about her including out of date ones, because it gives an excellent history. I keep a time line of symptoms that makes our own history which our docs have grown to rely on. That way all this info is right at hand when needed. You can request copies of all evals, tests results, lab, etc and they are legally yours for the asking. In the future, you can request that they copy you each time they send results to the doc. It may take getting his approval in some circumstances but it is possible. Good luck, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 I have to agree with the idea of the notebook, as it has " saved our bacon " more than once. I keep a list of all the nurse's notes, meetings wwith previous Dr's, current meds, and once a month I update our little(NOT) file to include things like milestones (when she sat up, etc), progress notes from therapy, IFSP goals, my parent rights & all that insurance stuff, and I always write out specific questions ahead of time so that when I go in to see any of Lexi's docs, I am (hopefully) coming across as well-informed and knowledgable. As we are working with a team of 10 specialists (cardiology, apnea, OT, PT, infant stim specialist, pediatrician, pediatric neurologist, & gastro-intestinal specialists, 20+ hours/week of nursing), I often feel like none of the other team members know what the other is doing, saying, recommending, etc. It's sort of like we're on a run-away train that no-one is in control of. So, by having the book at the ready, I can sort of pull all of the pieces together. The Dr's LOVE it in the ER as it saves soooo much time when every second counts. I have one more experience to share and am wondering if anyone has had a similar one. When Lexi was very young (like maybe 6 weeks old) and we were right in the thick of things--multiple hospitalizations, EEG, MRI, EKG, desaturations down to 60%, the whole enchilada-- I had a Dr accuse me of Munchausen's by proxy. Like I had nothing beter to do than to FAKE a life threatening illness for my kid?!?!?! God knows I wouldn't wish this disability on anyone, but it was crushing to have a supposed professional level such a charge. Needless to say, I felt some small degree of comfort when 2 weeks later they discovered her lactate, pyruvate, and carnitine levels were off. Is that sad that I was relieved that I wasn't going crazy and imagining all of this??? Sometimes I wish it were so........................ ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 I have to agree with the idea of the notebook, as it has " saved our bacon " more than once. I keep a list of all the nurse's notes, meetings wwith previous Dr's, current meds, and once a month I update our little(NOT) file to include things like milestones (when she sat up, etc), progress notes from therapy, IFSP goals, my parent rights & all that insurance stuff, and I always write out specific questions ahead of time so that when I go in to see any of Lexi's docs, I am (hopefully) coming across as well-informed and knowledgable. As we are working with a team of 10 specialists (cardiology, apnea, OT, PT, infant stim specialist, pediatrician, pediatric neurologist, & gastro-intestinal specialists, 20+ hours/week of nursing), I often feel like none of the other team members know what the other is doing, saying, recommending, etc. It's sort of like we're on a run-away train that no-one is in control of. So, by having the book at the ready, I can sort of pull all of the pieces together. The Dr's LOVE it in the ER as it saves soooo much time when every second counts. I have one more experience to share and am wondering if anyone has had a similar one. When Lexi was very young (like maybe 6 weeks old) and we were right in the thick of things--multiple hospitalizations, EEG, MRI, EKG, desaturations down to 60%, the whole enchilada-- I had a Dr accuse me of Munchausen's by proxy. Like I had nothing beter to do than to FAKE a life threatening illness for my kid?!?!?! God knows I wouldn't wish this disability on anyone, but it was crushing to have a supposed professional level such a charge. Needless to say, I felt some small degree of comfort when 2 weeks later they discovered her lactate, pyruvate, and carnitine levels were off. Is that sad that I was relieved that I wasn't going crazy and imagining all of this??? Sometimes I wish it were so........................ ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 , Our appointment with Dr. Cohen is September 13. Sorry we'll miss you! -- The 's Ann Arbor, MI j-cooper@... http://www.mich.com/~jaj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 , Our appointment with Dr. Cohen is September 13. Sorry we'll miss you! -- The 's Ann Arbor, MI j-cooper@... http://www.mich.com/~jaj Quote Link to comment Share on other sites More sharing options...
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