Comments on: Closed-Loop Progress Report http://www.diabetesmine.com/2008/01/closed-loop-pro.html A gold mine of straight talk and encouragement for people living with diabetes Mon, 13 Feb 2012 01:28:10 +0000 hourly 1 http://wordpress.org/?v= By: Peter http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-427419 Peter Fri, 13 Nov 2009 20:24:56 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-427419 I would like to speak to those who have chosen to not have children because they may pass on their diabetes. I have type 1 diabetes and have had it for 13 years. None of my family has diabetes and no records of any of my extended family with diabetes. I will choose to have children and hope for the best possible health for my child as I would with any child if I had diabetes or not. I don't think because I have diabetes my children will immediately be diagnosed with it, just my opinion. Peter I would like to speak to those who have chosen to not have children because they may pass on their diabetes. I have type 1 diabetes and have had it for 13 years. None of my family has diabetes and no records of any of my extended family with diabetes. I will choose to have children and hope for the best possible health for my child as I would with any child if I had diabetes or not. I don’t think because I have diabetes my children will immediately be diagnosed with it, just my opinion.
Peter

]]> By: Alan Marcus http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-243710 Alan Marcus Sat, 21 Feb 2009 23:55:52 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-243710 I am very intrigued by the responses to the what a major corporation in the area of diabetes technology had in mind for their product future. The success of their products is definitely linked to economic well being but that creates a competitive atmosphere that hopeful drives improvement in the tools available to provide care. A company that fails to meet the needs of its customers is a company that ceases to exist. Since I have returned to clinical care I realize how much I depend on others (patients and corporations and health care providers of all types) to provide me with the tools that allow me to assist in hoping to approach achieving improved care for those who pay me the highest complement of trusting me to be part of their life. It is impossible to have a one size fits all answer to the needs of people in dealing with a disease that although common genetically in so many ways is individualized in its expression ultimately requiring each patient to be managed with the focus on the n of one rather than by group think. Alan I am very intrigued by the responses to the what a major corporation in the area of diabetes technology had in mind for their product future.
The success of their products is definitely linked to economic well being but that creates a competitive atmosphere that hopeful drives improvement in the tools available to provide care.
A company that fails to meet the needs of its customers is a company that ceases to exist.
Since I have returned to clinical care I realize how much I depend on others (patients and corporations and health care providers of all types) to provide me with the tools that allow me to assist in hoping to approach achieving improved care for those who pay me the highest complement of trusting me to be part of their life.
It is impossible to have a one size fits all answer to the needs of people in dealing with a disease that although common genetically in so many ways is individualized in its expression ultimately requiring each patient to be managed with the focus on the n of one rather than by group think.
Alan

]]> By: Diane http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-42501 Diane Mon, 16 Jun 2008 17:32:09 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-42501 I have had type 1 for 35 years, I now have 3 children of which 2 have type 1. My children are full of love and life and for those of you who say you would adopt or not have kids for the fear of passing it on, I myself and my children ask you this, would you have prefered not to be born. ask yourself the question, if I had the choice hmmm diabetes or not be here I think I would prefer to be here and have the chance to love life than never experience. I have not had it easy with the eye prdobs and that but I still love being alive, and so do my children. Regards Di I have had type 1 for 35 years, I now have 3 children of which 2 have type 1. My children are full of love and life and for those of you who say you would adopt or not have kids for the fear of passing it on, I myself and my children ask you this, would you have prefered not to be born. ask yourself the question, if I had the choice hmmm diabetes or not be here I think I would prefer to be here and have the chance to love life than never experience. I have not had it easy with the eye prdobs and that but I still love being alive, and so do my children. Regards Di

]]> By: Chuck http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-39774 Chuck Mon, 21 Apr 2008 18:21:27 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-39774 I'm interested in hearing more people's opinions about LCT's breakthroughs and how Big Pharma is going to react. I'm a type 1 that's had diabetes for 26 years. For something that is safe as LCT's product, why can't this be taken to market faster. I'm sure that there are a lot of factors. It seems as if LCT is the only company out there that is actively trying to make diabetecs lives easier rather than just treat it with new products that do the same things as the old ones. I’m interested in hearing more people’s opinions about LCT’s breakthroughs and how Big Pharma is going to react. I’m a type 1 that’s had diabetes for 26 years. For something that is safe as LCT’s product, why can’t this be taken to market faster. I’m sure that there are a lot of factors. It seems as if LCT is the only company out there that is actively trying to make diabetecs lives easier rather than just treat it with new products that do the same things as the old ones.

]]> By: Jan http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-39773 Jan Mon, 14 Jan 2008 04:55:34 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-39773 Upon second glance, it DOES look like an older teen's tush.... my apologies! She just had her third sensor insertion (minilink) in the arm today, with EMLA, and no complaints. She is ten with very, very little fat, in fact, none. The other two sites look very clean, more tape residue than anything else. No scars. Once the sensor is in, she does not notice it. I know come summer, she may protest about the arm site but for now sensor site is covered by a long sleeve shirt. I am very glad there will be competition in the cgms field, the more choices the better for us. I DO read your blog and read about your experiences with the Dexcom with much interest. xenotransplantation, smart insulins, even the closed loop most likely are years away, as in TEN. Our only choice is to work with what we've got, warts and all. I also believe part time use of cgms can be very beneficial if it proves too difficult or awkward to wear it all the time. P.S. Whatever happened to the promised Nano-pump Animas was supposed to be bringing out? Upon second glance, it DOES look like an older teen’s tush…. my apologies! She just had her third sensor insertion (minilink) in the arm today, with EMLA, and no complaints. She is ten with very, very little fat, in fact, none. The other two sites look very clean, more tape residue than anything else. No scars. Once the sensor is in, she does not notice it. I know come summer, she may protest about the arm site but for now sensor site is covered by a long sleeve shirt. I am very glad there will be competition in the cgms field, the more choices the better for us. I DO read your blog and read about your experiences with the Dexcom with much interest. xenotransplantation, smart insulins, even the closed loop most likely are years away, as in TEN. Our only choice is to work with what we’ve got, warts and all. I also believe part time use of cgms can be very beneficial if it proves too difficult or awkward to wear it all the time. P.S. Whatever happened to the promised Nano-pump Animas was supposed to be bringing out?

]]> By: AmyT http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-39772 AmyT Sun, 13 Jan 2008 16:21:03 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-39772 Hi Jan, I didn't believe the photo to be a child's tush at all, or I wouldn't have run it. It looks like a young man to me -- aged 18 or 20ish? Also, I was simply pointing out that the sites don't look too comfortable. I'm not knocking the technology, believe me! (which you'll know if you read this blog regularly). Thanks, AmyT Hi Jan,

I didn’t believe the photo to be a child’s tush at all, or I wouldn’t have run it. It looks like a young man to me — aged 18 or 20ish?

Also, I was simply pointing out that the sites don’t look too comfortable. I’m not knocking the technology, believe me! (which you’ll know if you read this blog regularly).

Thanks,
AmyT

]]> By: Jan http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-39771 Jan Sun, 13 Jan 2008 13:16:01 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-39771 Amy, as an avid reader of your blog, which IMHO has the most current, up-to-date info. available in an easy-to-read format, I would like to voice an objection to the flip comment "Oooh, no thanks, if it looks like that, I'm willing to wait" along with the accompanying picture of a young child's tush area. Firstly, I believe some of the child's tush area should have been covered, exposing only the area around the site. (I realize you are probably just reproducing a picture already taken and distributed). Secondly, we are dealing with a ten year old in puberty with the accompanying crazy, fluctuating blood sugars, due to growth and other hormones. Who TF CARES what the minilink LOOKS like! Appearance is not the reason we are using it! We have used ours since Dec. 18th and had to disconnect on January 5th due to a pump problem (MM sent us a brand new pump promptly). We had an endo appointment on Jan. 7th and during that short time her A1c had dropped from 6.9 to 6.5. We had an A1c drawn 6 weeks ago when we were at endo anyway for another appointment. And we had not changed any basals yet, as we wanted the info before changing. This technology will allow us to get her A1c WAY down; more importantly, will allow us to control the constant BS fluctuations. That is why we use it. By the time she is 18, she will have had Type 1 for 10 years. Puberty and teen years being the most difficult to control Type 1 diabetes, without it, she may very well have complications after those ten years are up -- at 18! The scars on the tush area are most likely from the sets to the child's insulin pump. We use sils and we have pimples upon removal of the site, which do heal. We have worn our minilink in the arm. We used the first one for 10 days straight. Second one a little less. She had a slight mark which is no longer evident. Minilink looks like a seashell, and is relatively small. I am aware that the Dexcom is smaller. My huge complaint about the minilink is the ridiculously large introducer needle. Minimed needs to get on the ball here. Wait two more years to start cgms until Animas and Dexcom and/or Omnipod and Dexcom get their act together? I don't think so. P.S. We still have our Animas pump under warranty so if Dexcom and Animas start communicating, we could reconsider and use the Dexcom. The Minilink has been accurate for us. It does not catch quick rises or quick drops accurately, i.e., you may get a high alarm at 180 with an arrow up and she's 240, but at the point of the alarm we check BS by fingerstick and correct. Or alarm at 90 and she's 60. Low alarm we pushed up to 100 to avoid this problem. Too many alarms so we may push low alarms back down again. I AM THRILLED WITH THIS TECHNOLOGY. THRILLED BEYOND BELIEF. Two more years of roller-coaster blood sugars? Who knows how much damage can occur in two years time? We do not have the luxury of being willing to wait. Amy, as an avid reader of your blog, which IMHO has the most current, up-to-date info. available in an easy-to-read format, I would like to voice an objection to the flip comment “Oooh, no thanks, if it looks like that, I’m willing to wait” along with the accompanying picture of a young child’s tush area. Firstly, I believe some of the child’s tush area should have been covered, exposing only the area around the site. (I realize you are probably just reproducing a picture already taken and distributed). Secondly, we are dealing with a ten year old in puberty with the accompanying crazy, fluctuating blood sugars, due to growth and other hormones. Who TF CARES what the minilink LOOKS like! Appearance is not the reason we are using it! We have used ours since Dec. 18th and had to disconnect on January 5th due to a pump problem (MM sent us a brand new pump promptly). We had an endo appointment on Jan. 7th and during that short time her A1c had dropped from 6.9 to 6.5. We had an A1c drawn 6 weeks ago when we were at endo anyway for another appointment. And we had not changed any basals yet, as we wanted the info before changing. This technology will allow us to get her A1c WAY down; more importantly, will allow us to control the constant BS fluctuations. That is why we use it. By the time she is 18, she will have had Type 1 for 10 years. Puberty and teen years being the most difficult to control Type 1 diabetes, without it, she may very well have complications after those ten years are up — at 18! The scars on the tush area are most likely from the sets to the child’s insulin pump. We use sils and we have pimples upon removal of the site, which do heal. We have worn our minilink in the arm. We used the first one for 10 days straight. Second one a little less. She had a slight mark which is no longer evident. Minilink looks like a seashell, and is relatively small. I am aware that the Dexcom is smaller. My huge complaint about the minilink is the ridiculously large introducer needle. Minimed needs to get on the ball here. Wait two more years to start cgms until Animas and Dexcom and/or Omnipod and Dexcom get their act together? I don’t think so. P.S. We still have our Animas pump under warranty so if Dexcom and Animas start communicating, we could reconsider and use the Dexcom. The Minilink has been accurate for us. It does not catch quick rises or quick drops accurately, i.e., you may get a high alarm at 180 with an arrow up and she’s 240, but at the point of the alarm we check BS by fingerstick and correct. Or alarm at 90 and she’s 60. Low alarm we pushed up to 100 to avoid this problem. Too many alarms so we may push low alarms back down again. I AM THRILLED WITH THIS TECHNOLOGY. THRILLED BEYOND BELIEF. Two more years of roller-coaster blood sugars? Who knows how much damage can occur in two years time? We do not have the luxury of being willing to wait.

]]> By: Karen http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-39770 Karen Sat, 12 Jan 2008 20:13:15 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-39770 Lauren and Amy, I have been Type 1 for 41 years and I chose not to have kids because I did not want to pass on this awful disease. Lauren, I understand your thought process. I love my nieces and nephews to death, but the thought of them getting this disease is something I don't think I could endure, so I know I made the right choice. Lauren and Amy,

I have been Type 1 for 41 years and I chose not to have kids because I did not want to pass on this awful disease. Lauren, I understand your thought process. I love my nieces and nephews to death, but the thought of them getting this disease is something I don’t think I could endure, so I know I made the right choice.

]]> By: Lauren http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-39769 Lauren Sat, 12 Jan 2008 01:24:26 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-39769 I'm not sure that because I don't want to pass on my disease, it logically follows that I'm suicidal. My life is a fait accompli, but when it comes to having kids, there's choice involved. Surely I'm not the first person to avoid biological reproduction because of a strong genetic component to my illness. My type 1 aunt did exactly that. I hear a lot about the "heartbreak" of having sick kids, the guilt of passing something on. I'd want a better life for my kids. I'd like to stop the type 1 gene in its tracks. I’m not sure that because I don’t want to pass on my disease, it logically follows that I’m suicidal. My life is a fait accompli, but when it comes to having kids, there’s choice involved.

Surely I’m not the first person to avoid biological reproduction because of a strong genetic component to my illness. My type 1 aunt did exactly that. I hear a lot about the “heartbreak” of having sick kids, the guilt of passing something on. I’d want a better life for my kids. I’d like to stop the type 1 gene in its tracks.

]]> By: AmyT http://www.diabetesmine.com/2008/01/closed-loop-pro.html/comment-page-1#comment-39768 AmyT Fri, 11 Jan 2008 20:43:11 +0000 http://diabetesmine.dreamhosters.com/2008/01/08/closed-loop-progress-report/#comment-39768 Wow, Lauren, that's quite a story. I'm surprised that you feel like your parents made a mistake in having you. Isn't life worth living, even with the diabetes? Wow, Lauren, that’s quite a story. I’m surprised that you feel like your parents made a mistake in having you. Isn’t life worth living, even with the diabetes?

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