Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Believe me, I am not trifling with it. Vanco was the antibiotic that " cured " me of Cdiff & in case you don't know what Cdiff is, it is also not something to be trifled with. People die from Cdiff. People can have Cdiff for years altho most doctors deny that. You can google it if you want to but take my word for it, it is awful. Vanco has the huge advantage for me in that it IS a Lyme antibiotic but it won't or certainly shouldn't cause a recurrence of the Cdiff. ly I don't know what is worse. Chronic Cdiff or chronic Lyme. Pam alrightguy123 wrote: > > Vanco is an antibiotic of last resort, not something at all to be > trifled with. I've read one other post from a largely self treated > Lyme patient who was using Vanco. Somehow the guy has two or three > physicians writing his scripts for him. > > Hearing use of the Vanco sort of scares me that we might be > contributing to " super bugs " . Once the super bugs get stronger, then > we are really up the proverbial creek! > > > > > > ....... After much discussion, we decided to put me on Vancomycin. > This has the > > advanrtage of being a good Lyme drug but also a drug that I used when I > > had Cdiff to combat that. So I SHOULD be ok re any recurrence of the > > Cdiff, but t shall still take a number of probiotics along with it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 Hi Pam. Can you tell us what Cdiff is and how did you find out that you had this? Your knowledge may help many others still suffering. Thank you. Penni Re: [ ] Re: New Believe me, I am not trifling with it. Vanco was the antibiotic that " cured " me of Cdiff & in case you don't know what Cdiff is, it is also not something to be trifled with. People die from Cdiff. People can have Cdiff for years altho most doctors deny that. You can google it if you want to but take my word for it, it is awful. Vanco has the huge advantage for me in that it IS a Lyme antibiotic but it won't or certainly shouldn't cause a recurrence of the Cdiff. ly I don't know what is worse. Chronic Cdiff or chronic Lyme. Pam alrightguy123 wrote: > > Vanco is an antibiotic of last resort, not something at all to be > trifled with. I've read one other post from a largely self treated > Lyme patient who was using Vanco. Somehow the guy has two or three > physicians writing his scripts for him. > > Hearing use of the Vanco sort of scares me that we might be > contributing to " super bugs " . Once the super bugs get stronger, then > we are really up the proverbial creek! > > > > > > ....... After much discussion, we decided to put me on Vancomycin. > This has the > > advanrtage of being a good Lyme drug but also a drug that I used when I > > had Cdiff to combat that. So I SHOULD be ok re any recurrence of the > > Cdiff, but t shall still take a number of probiotics along with it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 Penni, Cdiff is Clostridium Difficile. It's a bacteria that is just about everywhere. The problem occurs in humans when the normal intestinal flora is wiped out by antibiotics & the Cdiff bacteria is allowed to grow unchecked. Lots of people take abx without difficulty - certainly I did over the years - but this time my immune systems was down following a year of severe stress. After I took a course of Augmentin for a cat bite in October of 2005, I came down with Cdiff - dreadful unrelenting diarrhea, cold chills, fever. I ended up in the ER where I needed two bags of fluids to get me rehydrated. In the next 3 months, I lost 30 pounds & was in the ER once again. What food I could eat was limited to boiled potatoes, brown rice, applesauce, avocadoes, boiled or baked chicken, baked fish, & millet bread. My local doctor said the longest case he had ever seen was 12 weeks. It took me a year. Normally one starts out with Flagyl (metronidazole) & aside from the side effects from that, I started feeling better after about 6 weeks. So I started eating a bit of other things & then I weaned off the Flagyl in December. Within 3 days I was back in the ER. I won't even go in to the physical symptoms. I was referred to the GI clinic at U of WI in Madison, WI, & they switched me to Vancomycin. Initially it took me 500 mg 4 times a day to get the diarrhea stopped again. I was on Vanco 275 mg 4 times daily until end of February & then I took 4 more months to wean myself off it. My last Vanco was end of June 2006 & I've been fine since. Cdiff is everywhere. On surfaces it can live for 7 months. In hospitals & nursing homes it is all o ver the place. If you have Cdiff in a hospital, they isolate you just as they would for MRSA. The normal disinfectants don't kill it, only bleach. Now whenever I am in a public restroom, I wash my hands & then open the door with a paper towel. But it's almost impossible to protect against it. It can be on door handles anywhere, on the handles of the shopping carts in the markets, basically ANYTHING you touch ANYWHERE! There is no accurate figure on how many cases of Cdiff there are in the country but it is rising all the time. Same with the figures for deaths, but the estimate is at least 5000. In Canada it is higher than that. They are keeping figures for some hospitals in Canada & it is appalling. I joined a Cdiff forum online which like all of our email support groups was a godsend. There I learned about probiotics - my doctor just told me to eat yogurt! Sheesh. Y ou can't EAT enough yogurt to get enough probiotics to make any difference. But some people on that forum have had Cdiff for years. Every time they go off the drug, it recurs. So even tho it took me a year, I was a lucky one. Vanco is indeed a drug of last resort & there are people on the Cdiff forum who have had to go the next step in the process of looking for a cure & I am not even going to go into what that is. If anyone wants to know, they can email me privately. I was terrified that I was going to have to do that but I had it lined up just in case. Cdiff takes over your life, much as Lyme does. It is debilitating, demoralizing, disgusting & it brings your whole system down. A severe inflammation of the GI tract affects all parts of the body & it takes a long long time for things to get anywhere near back to normal. Even when I was eating normally again, I knew that my colon was still not normal & I was eating carefully & taking good supplements under the care of a good nutritionist. So anyone who takes broad spectrum abx should be on a good regimen of probiotics. I am not at all happy about taking Vanco again but at least the drug that treats Lyme also is the drug that treats Cdiff so that all of those lethal spores that are probably still there should not have a chance to proliferate even when the Vanco wipes out all the good flora. If anyone wants to know more about this, feel free to email. Too many doctors dismiss this as " oh, you'll be fine in a month or so. " NOT! Pam Penni Morton wrote: > > Hi Pam. Can you tell us what Cdiff is and how did you find out that > you had this? Your knowledge may help many others still suffering. > Thank you. Penni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 Pam, My Dr. told me recently that I have chronic H-Pylori. It sounds slightly similar to what you're discussing. Have you heard of this? It's a bacterial stomach infection and most people don't know they even have it. Penni Re: [ ] New Penni, Cdiff is Clostridium Difficile. It's a bacteria that is just about everywhere. The problem occurs in humans when the normal intestinal flora is wiped out by antibiotics & the Cdiff bacteria is allowed to grow unchecked. Lots of people take abx without difficulty - certainly I did over the years - but this time my immune systems was down following a year of severe stress. After I took a course of Augmentin for a cat bite in October of 2005, I came down with Cdiff - dreadful unrelenting diarrhea, cold chills, fever. I ended up in the ER where I needed two bags of fluids to get me rehydrated. In the next 3 months, I lost 30 pounds & was in the ER once again. What food I could eat was limited to boiled potatoes, brown rice, applesauce, avocadoes, boiled or baked chicken, baked fish, & millet bread. My local doctor said the longest case he had ever seen was 12 weeks. It took me a year. Normally one starts out with Flagyl (metronidazole) & aside from the side effects from that, I started feeling better after about 6 weeks. So I started eating a bit of other things & then I weaned off the Flagyl in December. Within 3 days I was back in the ER. I won't even go in to the physical symptoms. I was referred to the GI clinic at U of WI in Madison, WI, & they switched me to Vancomycin. Initially it took me 500 mg 4 times a day to get the diarrhea stopped again. I was on Vanco 275 mg 4 times daily until end of February & then I took 4 more months to wean myself off it. My last Vanco was end of June 2006 & I've been fine since. Cdiff is everywhere. On surfaces it can live for 7 months. In hospitals & nursing homes it is all o ver the place. If you have Cdiff in a hospital, they isolate you just as they would for MRSA. The normal disinfectants don't kill it, only bleach. Now whenever I am in a public restroom, I wash my hands & then open the door with a paper towel. But it's almost impossible to protect against it. It can be on door handles anywhere, on the handles of the shopping carts in the markets, basically ANYTHING you touch ANYWHERE! There is no accurate figure on how many cases of Cdiff there are in the country but it is rising all the time. Same with the figures for deaths, but the estimate is at least 5000. In Canada it is higher than that. They are keeping figures for some hospitals in Canada & it is appalling. I joined a Cdiff forum online which like all of our email support groups was a godsend. There I learned about probiotics - my doctor just told me to eat yogurt! Sheesh. Y ou can't EAT enough yogurt to get enough probiotics to make any difference. But some people on that forum have had Cdiff for years. Every time they go off the drug, it recurs. So even tho it took me a year, I was a lucky one. Vanco is indeed a drug of last resort & there are people on the Cdiff forum who have had to go the next step in the process of looking for a cure & I am not even going to go into what that is. If anyone wants to know, they can email me privately. I was terrified that I was going to have to do that but I had it lined up just in case. Cdiff takes over your life, much as Lyme does. It is debilitating, demoralizing, disgusting & it brings your whole system down. A severe inflammation of the GI tract affects all parts of the body & it takes a long long time for things to get anywhere near back to normal. Even when I was eating normally again, I knew that my colon was still not normal & I was eating carefully & taking good supplements under the care of a good nutritionist. So anyone who takes broad spectrum abx should be on a good regimen of probiotics. I am not at all happy about taking Vanco again but at least the drug that treats Lyme also is the drug that treats Cdiff so that all of those lethal spores that are probably still there should not have a chance to proliferate even when the Vanco wipes out all the good flora. If anyone wants to know more about this, feel free to email. Too many doctors dismiss this as " oh, you'll be fine in a month or so. " NOT! Pam Penni Morton wrote: > > Hi Pam. Can you tell us what Cdiff is and how did you find out that > you had this? Your knowledge may help many others still suffering. > Thank you. Penni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 Penni, Usually H pylori can be eradicated with several antibiotics for about 2 weeks. How has your doctor treated you? On Sun, Sep 7, 2008 at 8:07 PM, Penni Morton <penni49@...> wrote: > Pam, My Dr. told me recently that I have chronic H-Pylori. It sounds > slightly similar to what you're discussing. Have you heard of this? It's a > bacterial stomach infection and most people don't know they even have it. > Penni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 I have heard of it but don't know much about it. Cdiff takes place in the intestinal tract & believe me, if you have it, you KNOW! There is absolutely no way you could have Cdiff & be unaware of it! Pam Penni Morton wrote: > > Pam, My Dr. told me recently that I have chronic H-Pylori. It sounds > slightly similar to what you're discussing. Have you heard of this? > It's a bacterial stomach infection and most people don't know they > even have it. Penni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 Interesting you are " scared " taking anything but abx. I would personally be more scared taking the abx, from MY experience through the years. Funny how we become trained by the powers that be, eh? Interesting to say the least. By all means get the book and don't just read it, study it. Then take what you need from it and USE it. IT WORKS! Believe me, it does. Take care, Jim. ### > > Thanks, Jim for your history and the recommendation. I am scared to try > anything except antibiotics (which I assume the LLMD will give me when I > see him), but I will get the book and become more informed. I appreciate > the information. > > Maureen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 Hi Pam: Welcome, I remember you from another group. I agree with you that many will not totally erradicate Lyme with just herbs alone. However, I firmly believe that we can say the exact same thing about antibiotics. You can possibly get it into remission with either/or, but I do NOT believe it is EVER cured. THat being said, for me at least, I have had much more positive results with Herbs ONLY, as compared to Antibiotics ONLY, OR with herba and ABX together. For ME, there were just WAY TOO MANY side effects from the abx. AND I had lost my colon to abx back in 1994, long before I got my Lyme. Probiotics, Acidophilus; and Red Root tincture, and Milk Thistle are super important with Lyme, especially if you take abx. Sarsaparilla is also so very important as it is a great blood cleanser. So many people INCLUDING doctors don't take into consideration all the destroying of our natural eco systems that we interrupt when treating any kind of disease, especially Lyme, and overtax the liver and the rest of the Lymph system without doing anything to help it. THAT is more important than killing Spirochetes. Take care, Jim. ### > > Hi all, > > I'm new here. I was diagnosed with Lyme via Igenex a year ago & have > been going to a LLMD here in WI. Yesterday I went to a different one who > I liked much better. But a bit of history first. > > I had Cdiff in 2006/7 so I have to stay away from broad spectrum abx. So > that has complicated my treatment considerably. I have been fortunate > enough not to have what I would consider to be obvious symptoms & two > naturopaths have said that the " Lyme load " in my body is about 20%. So > I've been lucky so far. I've been treated for a year with herbs - > primarily Prima Una de Gato - but I know that this is only keeping the > Lyme at bay & one day down the line, I may be in trouble. Thus the trip > to the doctor yesterday. > > After much discussion, we decided to put me on Vancomycin. This has the > advanrtage of being a good Lyme drug but also a drug that I used when I > had Cdiff to combat that. So I SHOULD be ok re any recurrence of the > Cdiff, but t shall still take a number of probiotics along with it. > > I also have glaucoma & I was diagnosed with that at the same time as the > Lyme, one year ago. So I take some pretty strong drops for that. I hate > taking all these drugs but I know that with the glaucoma I'll probably > be taking them forever. > > I am really glad to be here. I have read the Buhner book, which I find > very interesting & very useful & I know that he has written that book > both for those who want to combine herbs with abx or to go it alone with > herbs. I just don't think one can really beat Lyme completely with just > the herbs. > > Look forward to hearing from you, > > Pam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 Sorry Phyliss, but I can't agree with you at all on THIS one. I am living PROOF that treating yourself, WITH proper knowledge and help from Buhner and to some degree these groups is not only possible, but it is the ONLY alternative to either dying, or at leasdt suffering the rest of whatever your life is. What is really important is that you take charge of YOUR life. YOU are the only one who gets to live in your body. Take care of it. And trust a lot more of what you feel, rather than what is supposed to work for everybody. because it doesn't. What works for one, may not work for another. But we have to keep plugging along and see what is best for US! By all means don't treat yourself IF you have no knowledge and/or confidence in your own decisions. But, I have found from years of experience, not only mine, but others; that OUR main job is to GET INFORMED, and then WORK at your own healing. Search, find knowledge. Knowledge is power. Take care of yourself, and keep us informed WHAT works for you. Jim. ### I went from a 30 to 40% life style to now at 98 to 99% lifestyle. AND enjoying life again which I thought would NEVER happen again, much less be alive to tell about it. > > I'm not afraid of alternatives, at least not all of them, but the ones I > have tried have not worked as well for me as antibiotics. I do think > people who self-treat are more at risk for making bad decisions - > whatever you choose, work with a healthcare professional, don't treat > yourself. > -- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 I agree totally. Antibiotics wrecked my bowels and they will never be the same. Concentrated nutrition and some herbs have kept my symptoms at bay and its a different idea then killing stuff, its working on the terrain of the body. Its like a healthy organic garden, when done right there are no bugs and no need for the heavy pesticides. Jim wrote: > > Hi Pam: > Welcome, I remember you from another group. > > I agree with you that many will not totally erradicate Lyme with > just herbs alone. However, I firmly believe that we can say the > exact same thing about antibiotics. You can possibly get it into > remission with either/or, but I do NOT believe it is EVER cured. > > THat being said, for me at least, I have had much more positive > results with Herbs ONLY, as compared to Antibiotics ONLY, OR with > herba and ABX together. For ME, there were just WAY TOO MANY side > effects from the abx. AND I had lost my colon to abx back in 1994, > long before I got my Lyme. > > Probiotics, Acidophilus; and Red Root tincture, and Milk Thistle > are super important with Lyme, especially if you take abx. > Sarsaparilla is also so very important as it is a great blood > cleanser. So many people INCLUDING doctors don't take into > consideration all the destroying of our natural eco systems that we > interrupt when treating any kind of disease, especially Lyme, and > overtax the liver and the rest of the Lymph system without doing > anything to help it. THAT is more important than killing Spirochetes. > > Take care, > Jim. > ### > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 Thank you, Jim. I've already ordered the book. And yes, under the care of a LLMD, I am using two alternative-type remedies to help my digestive problems, so I'm trying to be open minded at this point. I also just went to a Lyme support group meeting in my community yesterday, and they all seem to use a blend of ABX and alternative remedies with some on both ends of the spectrum. Clearly there is more to learn for me and I appreciate your comments. Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 : Sorry you too had to experience such harsh affects of antibiotics. They are killers all right. My duck said I was the first patient of his to lose my colon to Cipro. But two others, women, lost theirs too, after me, to the Cipro. Yet, when I got Lyme a few years later, he gave me Cipro again. His reasoning: I had already lost my Colon, so it will probably work to get rid of the Lyme. Some thinking eh? Well, it DID make the Lyme symptoms better, actually non existant for about 9 months. Then slowly it cam back over the next three or four years till it got so bad I thought I would die for sure. AND he wouldn't do a thing about it. He said everyone is cured after 21 days of abx and he had given me 24 days worth. THerefore I had to go on my own in search for a cure, or at least remission. Which I did. And now I am up to 98% or so and enjoying life again. Heck, I am 67, and in about 40 minutes I will be heading to town about 10 miles away, on my motorcycle that I bought last year. I had to sell my better one three years ago, as I thought I would never ride again. I thank God, Buhner,and the herbs every day for having another chance at life. And yes, when we are not TRYING to do things OUR way, and thinking we can improve on God's natural way of doing things, we can thrive wonderfully. Jim. ### > > I agree totally. Antibiotics wrecked my bowels and they will never be > the same. Concentrated nutrition and some herbs have kept my symptoms at > bay and its a different idea then killing stuff, its working on the > terrain of the body. Its like a healthy organic garden, when done right > there are no bugs and no need for the heavy pesticides. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2008 Report Share Posted September 20, 2008 what do you mean LOST your colon? do mean they surgically removed it because you took cipro? cathleen Jim wrote: > > : > Sorry you too had to experience such harsh affects of antibiotics. > > They are killers all right. My duck said I was the first patient > of his to lose my colon to Cipro. But two others, women, lost theirs > too, after me, to the Cipro. Yet, when I got Lyme a few years later, > he gave me Cipro again. His reasoning: I had already lost my Colon, > so it will probably work to get rid of the Lyme. Some thinking eh? > > Well, it DID make the Lyme symptoms better, actually non existant > for about 9 months. Then slowly it cam back over the next three or > four years till it got so bad I thought I would die for sure. AND he > wouldn't do a thing about it. He said everyone is cured after 21 > days of abx and he had given me 24 days worth. > > THerefore I had to go on my own in search for a cure, or at least > remission. Which I did. And now I am up to 98% or so and enjoying > life again. Heck, I am 67, and in about 40 minutes I will be heading > to town about 10 miles away, on my motorcycle that I bought last > year. I had to sell my better one three years ago, as I thought I > would never ride again. I thank God, Buhner,and the herbs > every day for having another chance at life. > > And yes, when we are not TRYING to do things OUR way, and thinking > we can improve on God's natural way of doing things, we can thrive > wonderfully. > > Jim. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi , welcome to the journey... I was banded by Dr. Kuri on May 27th of this year... I just hit my 50 pound mini goal. Good for you and the weight loss so far! I go to Kitty up in Arlington, WA.... Fill Management NW... she is great... I have only had 2 fills, not sure it I will get another one...maybe. My husband and parents were banded at the same time. Good luck on your journey and let us know if you have any further questions, there are a lot of people here to help.  Kammi in Everett, WA DOB 5/27/08 335+/285/175 Dr. Kuri - TJ Mexico self pay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2008 Report Share Posted September 27, 2008 Patti, I know of another lady who has adopted a girl from China...also deaf...just got her second CI! If you would like to contact me off the list I would love to tell you about her...I just don't know if I should share that information here! (sweetpea1971@...) Bilateral AB user, 11/07 and 8/08 On Sat, Sep 27, 2008 at 6:11 PM, Patti <kelly6@...> wrote: > I just joined this group today. We recently adopted a little girl from > China who is 8 and deaf. We are looking at possible CI's for her and > I'm trying to gather more information about them. So much of the > research seems to say that they may not work well for her because she > getting them so late in childhood. Does anyone here have experience > with this? She is pre-lingually deaf and has just started to use sign > language. She is learning sign language very quickly though and is > very eager to communicate. > > I'm glad to have found this group and look forward to learning from > your experiences. > > Patti > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Patti, there is a group called learn2hear learn2hear/ that will be glad to help you with listening activities and language builders for your child. Both of my kids wear ci's implanted around age 3. The learn2hear group puts up weekly lessons and such. Also, I knew a child who was implanted around age 5. She always did better w/sign since that ua what they did in school but family....not so much. At home she gestured tried to learn speech...but basically she was implanted and no follow up recommended. When I met her, she was beyond frustrated, so was the family, they had never heard of AVT (auditory verbal therapy), so I began " working " with her along side my two that were already used to living the auditory verbal life. I showed them how to work on her listening skills and wouldn't you know it, they informed the school w/an IEP meeting that they wanted some of this type training for their daughter....long story short, she's nine now and I still see her a couple of times a year. She's fluent in sign and I understood almost every word that she spoke. It basically helped w/frustrastions all the way around for everyone. She went from almost failing (she may have actually failed but not sure) to making much better grades, since she got some therapy! Hope this helps. If I were you (and I'm a huge AVT fan), I'd continue w/both sign and speech. If she's eight, I'd work on those learning to listen exercises and speech will follow after she learns how to hear. sounds like you guys are going to have a lot fun, and eager mind is a great sign she'll progress well. Val www.deafkidscanhear.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Hey, Patti - congratulations on your adoption and wonderful motherhood. Many people get the CI later in life, including those born deaf (or pre-lingual). I'm sure many will post and let you know how well things are going for them. Kids are amazingly resiliant and many adapt beautifully to the CI - and yes - hear and understand speech. It's definately worth persueing. Keep us posted and all the best. ) Jackie **************Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Patti: I don't think you should give up on CIs just because of her age. There is a advantage, yes, in implanting early but many of us on this board are testaments of having been implanted later in life. Eight is still pretty young, sompared to us middle-aged folks. However, I strongly, strongly encourage you to continue having her learn sign language, even if you pursue the CI and it is wildly successful. Some parents do not pursue sign as a first or second language for their deaf children, and speaking as someone who desperately wished that my own family would have signed when I was growing up (and even now that I have a successful CI), I would say that it would have made all the difference between me feeling connected to my family or finding it a burden to attend family functions now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Hi, Patti,  Welcome to the CIhear, and Congrats on adopting a little girl from China, She must be a delight. Regarding your worries, I was born deaf (profound) and 30 years later I got my CI! I am doing really well.. So I am living proof (and there's many many others) that CI can happen to any age as long they meet the candadicy, keep learning. I would keep signing for now and get AVT for her so she can also have chance to learn to speak aswell.  Good luck....  Have you tried CIcircle it's group for parents of deaf children who's implanted/going to be implanted.  Charlotte New I just joined this group today. We recently adopted a little girl from China who is 8 and deaf. We are looking at possible CI's for her and I'm trying to gather more information about them. So much of the research seems to say that they may not work well for her because she getting them so late in childhood. Does anyone here have experience with this? She is pre-lingually deaf and has just started to use sign language. She is learning sign language very quickly though and is very eager to communicate. I'm glad to have found this group and look forward to learning from your experiences. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Charlotte - Thank you for your very optimistic post! I needed it! I am also in the CI group for children, but some of the information there is different because so many of those kids received their implants very early in life. We are sort of caught in between - not an adult, but not under four years old. So, I know the results of Emma's CI will be different than those of the other kids in the group. We are definitely using lots of sign now. She is learning it pretty quickly and we will continue with ASL. Again, thanks to everyone for the warm welcome and hopeful responses. I am trying to learn as much as I can right now. Patti > > Hi, Patti, >  > Welcome to the CIhear, and Congrats on adopting a little girl from China, She must be a delight. > Regarding your worries, I was born deaf (profound) and 30 years later I got my CI! I am doing really well.. > So I am living proof (and there's many many others) that CI can happen to any age as long they meet the candadicy, keep learning. > I would keep signing for now and get AVT for her so she can also have chance to learn to speak aswell. >  > Good luck.... >  > Have you tried CIcircle it's group for parents of deaf children who's implanted/going to be implanted. >  > Charlotte > > > > New > > > I just joined this group today. We recently adopted a little girl from > China who is 8 and deaf. We are looking at possible CI's for her and > I'm trying to gather more information about them. So much of the > research seems to say that they may not work well for her because she > getting them so late in childhood. Does anyone here have experience > with this? She is pre-lingually deaf and has just started to use sign > language. She is learning sign language very quickly though and is > very eager to communicate. > > I'm glad to have found this group and look forward to learning from > your experiences. > > Patti > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Hi Patti, I don't recall how much hearing loss she has in your previous post. I wore hearing aid most of my life and didn't learn sign language until I was 20 while in college. Learning sign language was the best thing that has happened to me. I am glad she is motivated. I went from moderate to severe as I age, I was implanted last month at the age 43. For your case, it seemed like as long as there is no communication barrier, there is no rush. Has she tried a hearing aid? How did she feel about it? Something I would encourage to try first. I know many friends with hearing aids who has severe hearing loss do fine as long as they help - some with severe hearing loss do not hear well with hearing aid but do fine in life. Keeping up with education is most important. Check with your local schools and see what support they have for student with hearing loss whether with hearing aids, CI or nothing. Everyone is different. I decided to have CI later in life and realized how much I have missed out. At one point as a young girl I didn't want to go for CI because I was fine the way hearing aid helped. CI was my best option at this time because of my increased hearing loss. I wanted to go back the way I heard with hearing aids, participate in conversations, listening to music and talking on the phone, etc. Hope this helps and good luck, Suey ________________________________ > > From: kelly6@... > Date: Sun, 28 Sep 2008 18:44:09 +0000 > Subject: Re: New > > > Charlotte - Thank you for your very optimistic post! I needed it! I > am also in the CI group for children, but some of the information > there is different because so many of those kids received their > implants very early in life. We are sort of caught in between - not > an adult, but not under four years old. So, I know the results of > Emma's CI will be different than those of the other kids in the > group. > > We are definitely using lots of sign now. She is learning it pretty > quickly and we will continue with ASL. > > Again, thanks to everyone for the warm welcome and hopeful > responses. I am trying to learn as much as I can right now. > > Patti > > >> >> Hi, Patti, >> >> Welcome to the CIhear, and Congrats on adopting a little girl from > China, She must be a delight. >> Regarding your worries, I was born deaf (profound) and 30 years > later I got my CI! I am doing really well.. >> So I am living proof (and there's many many others) that CI can > happen to any age as long they meet the candadicy, keep learning. >> I would keep signing for now and get AVT for her so she can also > have chance to learn to speak aswell. >> >> Good luck.... >> >> Have you tried CIcircle it's group for parents of deaf > children who's implanted/going to be implanted. >> >> Charlotte >> >> >> >> New >> >> >> I just joined this group today. We recently adopted a little girl > from >> China who is 8 and deaf. We are looking at possible CI's for her > and >> I'm trying to gather more information about them. So much of the >> research seems to say that they may not work well for her because > she >> getting them so late in childhood. Does anyone here have experience >> with this? She is pre-lingually deaf and has just started to use > sign >> language. She is learning sign language very quickly though and is >> very eager to communicate. >> >> I'm glad to have found this group and look forward to learning from >> your experiences. >> >> Patti >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2008 Report Share Posted September 29, 2008 Yes, I'm another that was born profoundly deaf and had gotten an implant in the " middle age " . Dan > > Patti: > > I don't think you should give up on CIs just because of her age. There is a > advantage, yes, in implanting early but many of us on this board are > testaments of having been implanted later in life. Eight is still pretty > young, sompared to us middle-aged folks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Hi Dave, welcome to the site, It is a bit fidderly to get used to, but hang on in here and you will be pleased you did. This is a very active forum and up to 2000 posts a month. If there were any replies to your post they will be linked under your original post. For example, if you click on the post I am responding to and look beneath, you will find this post and then any more added to it. It also appears in the order in which it was posted. There are many experienced people here who will hopefully be able to guide and support you. You will read some positive posts also of people who have been able to get their life back, one step at a time. One things that is for sure - you are not alone anymore............You may also be comforted to know that there are some other males on the forum as well. jennyfreeman > > I posted my history on here recently. No idea how to use the site. I > havent had any feedback. > > Dave > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Hi Look under the subject heading ( - New to Group). 25614 - new to group .... the right hand column under TPA-UK News, scroll down until you find his clinics ... read the other letters on this page too ) Questions: My rheumatologist treats ... solely of patients using T3. Only two groups of our patients use T3. One group ... Sheila sheilaturner@.... campaigner77 Nov 10, 2008 9:00 am 25610 Re: new to group Hi and welcome I am sure you will get all the help and support you are looking for here, it is a great group of people, all sharing. Have you had any recent tests you would like to post? How are you doing on the Armour, improvements ... blondiethefirstuk whitbywitchuk@... blondiethefi... Nov 10, 2008 5:12 am 25602 new to group .... stuff on Thyroid Adrenal interface. Despite my medical background I am quite new to these ideas and I havent fully grasped it. I have had a few years of problems ... a lack of relaxed calm in my circumstances. All help/direction appreciated. monsiergentil monsiergentil@... monsiergentil Nov 9, 2008 11:43 pm I posted my history on here recently. No idea how to use the site. I havent had any feedback. Dave .._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Hi Dave Glad you found us. You are certainly in the right place now. You'll see that a lot of us have had very similar problems to the ones you describe. It takes a while but we DO get better. Sadly, GPs etc have little or no understanding of our condition. Consequently they often resort to treating our symptoms rather than the underlying cause. You will find lots of advice and support on this group and I'm sure with your medical experience you will be a great asset! Pen x Quote Link to comment Share on other sites More sharing options...
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