Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 >"This is fabulous!" one of the many marte's wanted to say and then >another of 'em remembered how often some of 'em winced at people >speaking -- as some good-natured (but need I mention also, of course >_erudite_) ?jungians? used to put this: "ex cathedra". [:-( :-)]. Hi Marte, Glad you enjoyed the article. While it does in some ways seem to explain things like empathy and transference/countertransference, etc, it seems to come for the POV of materialism which, maybe not unexpectedly, I don't necessarily subscribe to. I think. Maybe that's because I don't really understand some of the terminology. :>D Anyway, since I believe consciousness exists independently of the brain (and of the human organism for that matter) and because I see the brain less as a generator of consciousness and as more of an interface between the energy/consciousness of spirit/Universal Consciousness and the finite consciousness/energy of the body, I could theorize the bases of such feelingnesses in a totally different way. But I thought I'd post the piece and see if anybody saluted it. >For starters, Sam (and anyone else around this "camp fire" or others >sending smoke signals one to another), to explore starting a new >list. I know you said reply offline but since I'm here, I'm just gonna include a reply. I probably wouldn't be able to participate in another list. I'm already on several and it's not uncommon for me to find 60 or more emails waiting when I sign on in the mornings. Not sure I could handle another one. Blissings, Sam Don't believe everything you think. ~ Bumper StickerMany of the truths we cling to depend greatly on our point of view. ~ Obi-Wan Kenobi Choose your illusion carefully. ~ UnknownWho looks outside, dreams; who looks inside, awakes. ~ C.G. Jung Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 is she still having the reflux??????/--- graham andrews wrote: > Hello to everyone from The United Kingdom. > My name is Graham and I have a 6 year old daughter > who has Bronchiectasis but she also has > Gastro-esophageal Reflux, Spasmodic Croup and very > bad Asthma. She was given a PH study back in 2000 > but she pulled the tube out after 2 hours so they > never got a result. Unbeknown to my wife and I, they > had put the result down as negative result when in > fact they should have given a fail for the test. So > that means that for the first 4 years of her life > she was refluxing 15% of her stomach acid back into > her lungs. I know that it is not documented as to > where and how Bronchiectasis is contracted but I'm > sure that she wouldn't be having the problems that > she is today if they had only done the test again. > I'm not blaming anyone but I am angry by what has > happened. now has home oxygen and the use of a > wheelchair. She wears a Sats monitor whilst at > school so they can keep a close eye on her oxygen > levels. Her consultant at the Royal Brompton > Hospital in London has sent blood test and > lung biopsy's to the Hopkins Medical Centre in > land to see if there is anything that they have > missed. He has told us that her Lung Biopsy results > have come back as abnormal but they cannot tell us > why my daughter keeps having the problems that she > is. There are no help groups that I know off in > England that we can turn to for help. We have sought > a second opinion for my daughters illness and I was > hoping that someone out there might be able to point > us in the right direction. If anyone knows of a > specialist that I can e-mail who would be willing to > help us then I and my wife would be so grateful. > > > Yours hopefully > > > Graham > > > > > --------------------------------- > To help you stay safe and secure online, we've > developed the all new Yahoo! Security Centre. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Hi y. She has medication for the reflux. They have not repeated the PH study as yet but I'm sure that they will. She has Erythomycin as a profalatic to help pass her food more quickly. She is on many medications now. She has just been given AZOTHROPRINE and a reducing amount of PREDNISOLONE after spending the last 4 months on it after a 6 week intensive coarse of IV METHOLE PREDNISOLONE. Her Oxygen levels at night use to average only 88% in air. She has home oxygen but since starting her new coarse of drugs she is averaging about 92-93% in air.scotty wrote: is she still having the reflux??????/--- grahamandrews wrote:> Hello to everyone from The United Kingdom.> My name is Graham and I have a 6 year old daughter> who has Bronchiectasis but she also has> Gastro-esophageal Reflux, Spasmodic Croup and very> bad Asthma. She was given a PH study back in 2000> but she pulled the tube out after 2 hours so they> never got a result. Unbeknown to my wife and I, they> had put the result down as negative result when in> fact they should have given a fail for the test. So> that means that for the first 4 years of her life> she was refluxing 15% of her stomach acid back into> her lungs. I know that it is not documented as to> where and how Bronchiectasis is contracted but I'm> sure that she wouldn't be having the problems that> she is today if they had only done the test again.> I'm not blaming anyone but I am angry by what has> happened. now has home oxygen and the use of a> wheelchair. She wears a Sats monitor whilst at> school so they can keep a close eye on her oxygen> levels. Her consultant at the Royal Brompton> Hospital in London has sent blood test and> lung biopsy's to the Hopkins Medical Centre in> land to see if there is anything that they have> missed. He has told us that her Lung Biopsy results> have come back as abnormal but they cannot tell us> why my daughter keeps having the problems that she> is. There are no help groups that I know off in> England that we can turn to for help. We have sought> a second opinion for my daughters illness and I was> hoping that someone out there might be able to point> us in the right direction. If anyone knows of a> specialist that I can e-mail who would be willing to> help us then I and my wife would be so grateful. > > > Yours hopefully> > > Graham> > > > > ---------------------------------> To help you stay safe and secure online, we've> developed the all new Yahoo! Security Centre.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Hi Graham, Sorry to hear about your daughter, , and the problems she is having. I'm from Australia, so I can't really offer any help with names of specialists, etc. I have heard that the Royal Brompton U.K. is one of the best hospitals, so I'm surprised that you are not getting answers and better treatment. Do you know if your daughter's " bronch " is localised to one area? Has she been tested for CF? Perhaps she will do better when her asthma is under control. Most of us with bronch also suffer with reflux (GERD) and take medication for it. In my case, I developed bronch following whooping cough at 2 years' old. The reflux problem did not occur until later in life. I have heard that the National Jewish Hospital in Denver, U.S.A. is an excellent lung hospital. They have a website, and you can call the registered lung nurses or email to ask questions. http://www.njc.org/ Meantime, I hope you will hear from someone in the U.K. who can point you in the right direction. My best wishes to . Bunny ------------------------------------------------------- Hello to everyone from The United Kingdom. My name is Graham and I have a 6 year old daughter who has Bronchiectasis but she also has Gastro-esophageal Reflux, Spasmodic Croup and very bad Asthma. She was given a PH study back in 2000 but she pulled the tube out after 2 hours so they never got a result. Unbeknown to my wife and I, they had put the result down as negative result when in fact they should have given a fail for the test. So that means that for the first 4 years of her life she was refluxing 15% of her stomach acid back into her lungs. I know that it is not documented as to where and how Bronchiectasis is contracted but I'm sure that she wouldn't be having the problems that she is today if they had only done the test again. I'm not blaming anyone but I am angry by what has happened. now has home oxygen and the use of a wheelchair. She wears a Sats monitor whilst at school so they can keep a close eye on her oxygen levels. Her consultant at the Royal Brompton Hospital in London has sent blood test and lung biopsy's to the Hopkins Medical Centre in land to see if there is anything that they have missed. He has told us that her Lung Biopsy results have come back as abnormal but they cannot tell us why my daughter keeps having the problems that she is. There are no help groups that I know off in England that we can turn to for help. We have sought a second opinion for my daughters illness and I was hoping that someone out there might be able to point us in the right direction. If anyone knows of a specialist that I can e-mail who would be willing to help us then I and my wife would be so grateful. Yours hopefully Graham Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Hi Bunny, Thank you for your reply to my letter. You are correct about the Royal Brompton being one of, or even the best hospital for respiratory diseases in the world. 's consultant Dr Mark Rosenthal is also one of the best paediatric consultants I have ever come across. When we first found out that Meg had bronchiectasis we were told that it was confined to her right middle lobe. Unfortunately, since then she has had an open lung biopsy and we have now been told that it has spread. They also found abnormalities all over her lungs so it is not confined. She had 6 sweat tests which all failed so they did a genetics test on her blood but thankfully CF was not diagnosed. Everyone who asks what's wrong with Meg has never ever heard of bronchiectasis. They all think it's bronchitis. It was her consultant at our local hospital who suggested we try for a second opinion. She said that there might be someone out there somewhere who can put there finger on the problem that Meg has. We have been told that the biopsy results should not be as they are. They have been checked and double checked and they are so abnormal that nobody has seen anything like it before. They cannot put a full name to my daughters condition and that is all that we want. An answer, that's all. Thank you for taking the time to respond to my message. Many many thanks Graham.....Bunny & Bob wrote: Hi Graham,Sorry to hear about your daughter, , and the problems she is having.I'm from Australia, so I can't really offer any help with names ofspecialists, etc. I have heard that the Royal Brompton U.K. is one of thebest hospitals, so I'm surprised that you are not getting answers and bettertreatment. Do you know if your daughter's "bronch" is localised to onearea? Has she been tested for CF? Perhaps she will do better when herasthma is under control. Most of us with bronch also suffer with reflux(GERD) and take medication for it. In my case, I developed bronch followingwhooping cough at 2 years' old. The reflux problem did not occur untillater in life. I have heard that the National Jewish Hospital in Denver,U.S.A. is an excellent lung hospital. They have a website, and you can callthe registered lung nurses or email to ask questions.http://www.njc.org/Meantime, I hope you will hear from someone in the U.K. who can point you inthe right direction.My best wishes to .Bunny------------------------------------------------------- Hello to everyone from The United Kingdom.My name is Graham and I have a 6 year old daughter who hasBronchiectasis but she also has Gastro-esophageal Reflux, Spasmodic Croupand very bad Asthma. She was given a PH study back in 2000 but she pulledthe tube out after 2 hours so they never got a result. Unbeknown to my wifeand I, they had put the result down as negative result when in fact theyshould have given a fail for the test. So that means that for the first 4years of her life she was refluxing 15% of her stomach acid back into herlungs. I know that it is not documented as to where and how Bronchiectasisis contracted but I'm sure that she wouldn't be having the problems that sheis today if they had only done the test again. I'm not blaming anyone but Iam angry by what has happened. now has home oxygen and the use of awheelchair. She wears a Sats monitor whilst at school so they can keep aclose eye on her oxygen levels. Her consultant at the Royal BromptonHospital in London has sent blood test and lung biopsy's to the HopkinsMedical Centre in land to see if there is anything that they havemissed. He has told us that her Lung Biopsy results have come back asabnormal but they cannot tell us why my daughter keeps having the problemsthat she is. There are no help groups that I know off in England that we canturn to for help. We have sought a second opinion for my daughters illnessand I was hoping that someone out there might be able to point us in theright direction. If anyone knows of a specialist that I can e-mail who wouldbe willing to help us then I and my wife would be so grateful. YourshopefullyGraham Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hiya Hon, I just wanted to let you know that I have all the sames things that you are talking about, but the tethered cord is probably related to the fact the you maybe and probably have spina bifida which also coincides with chiari and EDS, if you have not yet been diagnosed with spina bifida than i urge you to have this checked out because with spina bifida you have more issues to address. I dont mean to scare and and am sorry if I did, I just want you to be aware for your own health. Also, if you do have spina bifida with all of this than you would have Arnold chiari malformation type 2 instead of just chiari. please let me know what you find out and if you have any other questions please feel free to email me anytime. Hope you have many pain-free days my friend. Sincerely, Tracey Neag ACM2 11mm Spina Bifida Tethered Cord-Detethered Nov. 2, 2005 EDS Fibromyalgia Von Willebrand Disease --------------------------------- Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hiya Hon, I just wanted to let you know that I have all the sames things that you are talking about, but the tethered cord is probably related to the fact the you maybe and probably have spina bifida which also coincides with chiari and EDS, if you have not yet been diagnosed with spina bifida than i urge you to have this checked out because with spina bifida you have more issues to address. I dont mean to scare and and am sorry if I did, I just want you to be aware for your own health. Also, if you do have spina bifida with all of this than you would have Arnold chiari malformation type 2 instead of just chiari. please let me know what you find out and if you have any other questions please feel free to email me anytime. Hope you have many pain-free days my friend. Sincerely, Tracey Neag Tracey Neag ACM2 11mm Spina Bifida Tethered Cord-Detethered Nov. 2, 2005 EDS Fibromyalgia Von Willebrand Disease __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi, If I had spina bifida, they would see this on the MRI's, right? None of the neurosurgeons can see a tethering through the back, and I never had any open wounds on my spine at birth. Is there something I don't know about. Re: (unknown) Hiya Hon, I just wanted to let you know that I have all the sames things that you are talking about, but the tethered cord is probably related to the fact the you maybe and probably have spina bifida which also coincides with chiari and EDS, if you have not yet been diagnosed with spina bifida than i urge you to have this checked out because with spina bifida you have more issues to address. I dont mean to scare and and am sorry if I did, I just want you to be aware for your own health. Also, if you do have spina bifida with all of this than you would have Arnold chiari malformation type 2 instead of just chiari. please let me know what you find out and if you have any other questions please feel free to email me anytime. Hope you have many pain-free days my friend. Sincerely, Tracey Neag ACM2 11mm Spina Bifida Tethered Cord-Detethered Nov. 2, 2005 EDS Fibromyalgia Von Willebrand Disease --------------------------------- Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Thanks for your suggestion. No, you didn't scare me. I kinda think that myself because of how my MRI reports were worded. What would be the factor that would mean I have spina bifida? Is it the fact I have an extra lumbar vertabrae? My MRI reports addressed the deformity in my lumbar area and also one in my cervical area -- two vertabrae being smaller than the others. But in my Thoracic MRI they actually stated that there was " no spina bifida " . Is that because I have it in the Cervical and Lumbar and just not in the middle of my back? If I have Chiari II, what else would be my issues? Thanks for your suggestions. Tracey Neag wrote: Hiya Hon, I just wanted to let you know that I have all the sames things that you are talking about, but the tethered cord is probably related to the fact the you maybe and probably have spina bifida which also coincides with chiari and EDS, if you have not yet been diagnosed with spina bifida than i urge you to have this checked out because with spina bifida you have more issues to address. I dont mean to scare and and am sorry if I did, I just want you to be aware for your own health. Also, if you do have spina bifida with all of this than you would have Arnold chiari malformation type 2 instead of just chiari. please let me know what you find out and if you have any other questions please feel free to email me anytime. Hope you have many pain-free days my friend. Sincerely, Tracey Neag ACM2 11mm Spina Bifida Tethered Cord-Detethered Nov. 2, 2005 EDS Fibromyalgia Von Willebrand Disease --------------------------------- Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 , Once when I was flying I saw a man get on with an oxygen hookup for the plane. I don't believe they let him use his own O tank. Anyway, this might be an idea for you the next time you have to fly. Frisco Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Lovely, Bruce! One can just visualize it........... gratefully ao Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Hello Lorraine, I have used musinex and it really helpswith the sinus stuff. I also know there is a Musinex D which is anexpectorant. It may be worth checking out also. Robbs, L & D Admin. ▪T▪ ▪ ▪Mobile ▪ Meridian Call Center Desk: Mobile: Fax: e-mail: .Robbs@... From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of L H ROTERINGSent: Tuesday, September 05, 200612:11 PMTo: bronchiectasis Subject: (unknown) Lorraine - Ihaven't lost my voice but my throat (and other body parts) stay pretty sorefrom coughing. Over the years my voice has changed from chroniccoughing. Tried something new last week to see if it was 'the magicanswer' which i'm always looking for to decrease the cough - tried musinex, the12 hr 600 mg but it didn't make any difference. Don't know if one has totake it a while to see a difference - I'm going to finish the bottle and see., Portland,ORReply-To: bronchiectasis To: bronchiectasis Subject: RE: Re: book " Breathing Free " Date: Tue, 5 Sep 2006 08:07:11 -0700 (PDT)Hi , My dad has this very dry cough that is so aggravating...hehas even lost his voice. The docs are telling him he has laryngitis now. Hasthat ever happened to you? I'm just curious because I have read thatpeople with chronic coughs may develop other issues with their voice box. L H ROTERING wrote:thanks, Janet. Think I'll try the book. I'm oneof those people who cough my brains out all of the time but don't coughanything up. I don' have an asthma dx either - have a MAC dx ascontinuing cause for my bronch and coughing. But I notice that if I'maround someone who has been smoking, certain perfumes, etc etc I startcoughing. That never used to happen until I got this infection lastNovember which is still hanging on. Most infection sx are gone but thecough is persistent. Nothing seems to help that. Dry and irritating andaggravating.Even started acupuncuture 3 weeks ago in an attempt to tryANYTHING that might help. had my 3rd tx yesterday but no change inbreathing or coughing. Planned to try acupuncutre and chiropractic workfor the first time but she said I'm " too frail and fragile " to do thechiropracty and she thought she'd break my bones. So, using teeny tinyneedles to try to help instead. Asked her to find some research onacupuncture and breathing problems but she can't find much., Portland,OR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Thanks ! I'll try and get some for my dad! "Robbs, " wrote: Hello Lorraine, I have used musinex and it really helps with the sinus stuff. I also know there is a Musinex D which is an expectorant. It may be worth checking out also. Robbs, L & D Admin. ▪T▪ ▪ ▪Mobile ▪ Meridian Call Center Desk: Mobile: Fax: e-mail: .Robbst-mobile From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of L H ROTERINGSent: Tuesday, September 05, 2006 12:11 PMTo: bronchiectasis Subject: (unknown) Lorraine - I haven't lost my voice but my throat (and other body parts) stay pretty sore from coughing. Over the years my voice has changed from chronic coughing. Tried something new last week to see if it was 'the magic answer' which i'm always looking for to decrease the cough - tried musinex, the 12 hr 600 mg but it didn't make any difference. Don't know if one has to take it a while to see a difference - I'm going to finish the bottle and see. , Portland, OR From: Lorraine Figueroa <lfigueroa1026>Reply-To: bronchiectasis To: bronchiectasis Subject: RE: Re: book "Breathing Free"Date: Tue, 5 Sep 2006 08:07:11 -0700 (PDT) Hi , My dad has this very dry cough that is so aggravating...he has even lost his voice. The docs are telling him he has laryngitis now. Has that ever happened to you? I'm just curious because I have read that people with chronic coughs may develop other issues with their voice box. L H ROTERING <roteringlmsn> wrote: thanks, Janet. Think I'll try the book. I'm one of those people who cough my brains out all of the time but don't cough anything up. I don' have an asthma dx either - have a MAC dx as continuing cause for my bronch and coughing. But I notice that if I'm around someone who has been smoking, certain perfumes, etc etc I start coughing. That never used to happen until I got this infection last November which is still hanging on. Most infection sx are gone but the cough is persistent. Nothing seems to help that. Dry and irritating and aggravating. Even started acupuncuture 3 weeks ago in an attempt to try ANYTHING that might help. had my 3rd tx yesterday but no change in breathing or coughing. Planned to try acupuncutre and chiropractic work for the first time but she said I'm "too frail and fragile" to do the chiropracty and she thought she'd break my bones. So, using teeny tiny needles to try to help instead. Asked her to find some research on acupuncture and breathing problems but she can't find much. , Portland, OR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 That is terrible that she was not given advice. I do not know anything about Yellow Nail but do know about bronchiectasis. It took me a year to get it diagnosed but now that it is, I feel it is under control. Of course, I don't know the extent to which her illness affects her lungs but speaking for myself, I do " postural drainage " once a day and get up a lot of phlegm that way. I also take two, low dose antibiotics, 3 days per week one week, then 3 days per week of the other one for one week and back to the first one and so on. This is done, as the doctor said, a a prophylactic to prevent bacteria that collects in the phlegm from developing into an infection/pneumonia. I had pneumonia 3 times last winter before I was diagnosed. If you go to GOOGLE and type in postural drainage, you can find out how to do it. My doctor simply told me to hang over the side of the bed from my arm pits to my head and take deep breaths and cough. It brings up lots of mucous and phlegm in about 30 minutes. I take a magazine and put it on the floor to help pass the time. And I always feel like a million bucks when I'm done. I hope this helps. Good luck to you and your mom. Marsha/NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 ---Thank you so much for your input..My mom isn't very good with computers, but I'll try to get her up and running on this, but in the meantime, I wanted to get any advice from anyone who has this.... She can barely sleep at night because she is coughing so much. I know they've given her medication to try to help this and some nights I guess are better than others....Do you have any advise for this? She has been on antibiotics a lot, to fight off any infections. She has been loosing a lot of weight too because every time she eats she coughs so much that it makes her throw up. I've read about the technique of laying over the bed, and I'm not sure if she's tried this. They have given her a machine, which she uses to try to get her to cough a lot of the phelm up, but once again that makes her throw up...I will share your input with her and thanks again. Rochester, NY In bronchiectasis , marsha granville wrote: > > That is terrible that she was not given advice. I do not know anything > about Yellow Nail but do know about bronchiectasis. It took me a year to > get it diagnosed but now that it is, I feel it is under control. Of course, > I don't know the extent to which her illness affects her lungs but speaking > for myself, I do " postural drainage " once a day and get up a lot of phlegm > that way. I also take two, low dose antibiotics, 3 days per week one week, > then 3 days per week of the other one for one week and back to the first one > and so on. This is done, as the doctor said, a a prophylactic to prevent > bacteria that collects in the phlegm from developing into an > infection/pneumonia. I had pneumonia 3 times last winter before I was > diagnosed. > > If you go to GOOGLE and type in postural drainage, you can find out how to > do it. My doctor simply told me to hang over the side of the bed from my > arm pits to my head and take deep breaths and cough. It brings up lots of > mucous and phlegm in about 30 minutes. I take a magazine and put it on the > floor to help pass the time. And I always feel like a million bucks when > I'm done. > > I hope this helps. Good luck to you and your mom. > > Marsha/NYC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 She can barely sleep at night because she is coughing so much. I know they've given her medication to try to help this and some nights I guess are better than others....Do you have any advise for this? She has been on antibiotics a lot, to fight off any infections. She has been loosing a lot of weight too because every time she eats she coughs so much that it makes her throw up. I've read about the technique of laying over the bed, and I'm not sure if she's tried this. They have given her a machine, which she uses to try to get her to cough a lot of the phelm up, but once again that makes her throw up...I will share your input with her and thanks again. Hi I'm Sandie. I'm 56. I was dx'd w/Alpha1 Antitrypsin Deficiency in 98. I've been on disability since 2000. Secondary and symptomatic to my A1ATD is Bronchiactasis. I empathize with your mother. This is a terrible disease. I, too, live on anti's nearly most of the month. My infections are so frequent we cant' keep me off of them long enough to begin some sort of maintenance program to manage the bronchiactasis. It really sux a fat wet toe. I cough frequently and it's pretty productive. We're all different in the way and time we cough. I've talked to a few gals, on the list, who have their spasms in the afternoon. Mine are usually when I first wake. It's violent..this cough is violent ..sometimes I worry about coughing so hard cause I'm afraid I'll collapse an already frail weak lung. You say she coughs to the point of throwing up. Is her cough productive? I've had moments where my cough, especially during an infection, was so nonstop I thought I wouldn't have a moment to come up to take a breath. It's scarey, to say the least. The machine you're talking about. Is that the Vest? I have a vest too. I dont use it very often..I've found it doesn't do much good, for me. Does it help her with a productive cough? The postural drip is an old, well known method for bringing up that terrible, sticky mucous. Does she have someone to do the percussion (pounding) on her back while she's lying over the side of the bed? That's necessary to help dislodge the sticky mucous that clings to the inside of our bronchi like sticky tape. Also, while she's doing this, she should drink water. Lemon water's good. It helps to loosen this garbage so it comes up a bit easier. As already mentioned, once we get that stuff out of our lungs, we breathe a little easier..if only for a little while. Best Wishes and welcome to the list group Sandie A1ATD/ZZ MD Never Look Down on SomeoneUnless You're Gonna Help Them Up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Hi Gloria Welcome! I tried Lyrica a couple of years ago, and like the other drugs in this family, it made my head very woozy and made it so when I stood up, I felt like I would pass out. I never noticed any help with the pain/buzzing/burning, but to be honest, I never stayed on any of these drugs (anti-seizure) for more than six-seven days. Kathy (unknown) Hi to all, I had been on Cymbalta without much effect and my primary MD asked to try a week of Lyrica. It helps cut down on the nerve pains I have in my legs BUT I don't like the way it makes my head feels woozy, slow thought response etc. Has anyone else been on this med or has tried it in the past. I also take Elavil, no more Cymbalta, Oxycontin low dose 3X day. One good thing I have done was to stop working back in Jan 07. I still have pain just don't have to fight the pains at work anymore. Take care to all, gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2007 Report Share Posted July 13, 2007 I walk pretty well most of the time, but I also have the problem you are describing with your daughter. When I walk for too long, my legs get weak and shaky and I pay for the trouble with days of pain. Getting groceries just kills me. I don't use a wheelchair. I try to not be in situations where I have to walk too far. Your daughter really doesn't have the same choice - when you go shopping, she has to go with you. If I really had no choice, I would get a wheelchair or scooter for far distance mobility. Your daughter wouldn't necessarily need it for school, would she? If she doesn't have to walk very far at school, that is? Of course, what I think of as " too far to walk " might be much farther than what someone else is capable of. I'm so sorry you have this added worry. --- Lani Mcrae wrote: > Hi all, > I'm in a bit of a situation where i need to talk > to you guys as a sounding board as well to hear from > others who are facing similar struggles and may have > advice for me. > > It is almost a year since my 4 1/2 year old > daughter, Ella was detethered. If she is walking > short distances, Ella appears fine and on looking at > her you wouldn't believe she has a worry in the > world. She walks, she runs and we feel blessed! > However, if she needs to walk for any length of time > or distance her legs become very weak and she just > can't do it. > > Her neurologist has explained to us that the nerve > messages to her legs have been affected and this > causes the problems. Up to now we have used her > jogger pram in these situations and this has helped > her heaps. But now she is too big for her pram and > feels way too old for it! Like i said she is by no > means affected to the point where she needs a > wheelchair all of the time and we feel very lucky. > But, today after another difficult shopping trip of > trying to carry my 20kg daughter or find a shopping > trolley that i can put her in that will see us > through the distance between the shops i feel sad > and confronted by something that i have obviously > been trying to avoid. > > Her physiotherapist has suggested we order a > wheelchair for these times. She starts school next > year and i worry so much for her. My question is... > are there many of you out there who appear to walk > fine, even run and yet need a wheelchair sometimes? > Or any of you with kids in a similar situation? I am > feeling at a bit of a loss at the moment and it > would mean alot to hear from you. > > Thanks again, > Lani > > > --------------------------------- > Yahoo!7 Mail has just got even bigger and better > with unlimited storage on all webmail accounts. Find > out more. > > [Non-text portions of this message have been > removed] > > --Artificial Intelligence is no match for Natural Stupidity Check out my blog: http://princessmatildalovestostamp.blogspot.com ________________________________________________________________________________\ ____ Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search http://search.yahoo.com/search?fr=oni_on_mail & p=graduation+gifts & cs=bz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2007 Report Share Posted July 13, 2007 Hi Lani Both me and my 4 year old have a similar situation for different reasons (TSC for me, Chiari/Syringomyelia for him) where we are fine for short distances but get in trouble for a longer distance. I've been working all year at improving my strength and endurance, it is very slow b/c like says if you do too much it might be days of painful, shakey, weak legs. I try to go to the gym regularly. HAving said that, in 12/05 I could barely make it down the supermarket aisle and now I can handle a reasonable supermarket trip. I say reasonable b/c the big Costco visit (gigantic store here in US for those abroad) just kills me and I have barely touched the malls in 2 years. I ordered groceries on line for a long time. My 4 year old rides in the shopping cart alot, that is one thing that brought my attention and added to our concern when we were trying to figure out what was wrong. Ever since his surgery he has started to walk more in the stores. I try to go on walks and bike rides regularly and I have him in swimming too. He has made a lot of progress but still wouldn't be able to tolerate the same distance as the other kids. His surgery was 3/07 so I am hoping that he will continue to make progress. I'm thinking that our little 4 year olds have better chances of recovering nerve/muscle function because they are so young but remember that it can take 1-2 years. At my one year mark since surgery I felt kind of down about not being able to be more active but over the last few months I have made some more progress. Best wishes > >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: (unknown) >Date: Fri, 13 Jul 2007 14:54:32 +1000 (EST) > >Hi all, > I'm in a bit of a situation where i need to talk to you guys as a >sounding board as well to hear from others who are facing similar struggles >and may have advice for me. > > It is almost a year since my 4 1/2 year old daughter, Ella was >detethered. If she is walking short distances, Ella appears fine and on >looking at her you wouldn't believe she has a worry in the world. She >walks, she runs and we feel blessed! However, if she needs to walk for any >length of time or distance her legs become very weak and she just can't do >it. > > Her neurologist has explained to us that the nerve messages to her legs >have been affected and this causes the problems. Up to now we have used her >jogger pram in these situations and this has helped her heaps. But now she >is too big for her pram and feels way too old for it! Like i said she is >by no means affected to the point where she needs a wheelchair all of the >time and we feel very lucky. But, today after another difficult shopping >trip of trying to carry my 20kg daughter or find a shopping trolley that i >can put her in that will see us through the distance between the shops i >feel sad and confronted by something that i have obviously been trying to >avoid. > > Her physiotherapist has suggested we order a wheelchair for these times. >She starts school next year and i worry so much for her. My question is... >are there many of you out there who appear to walk fine, even run and yet >need a wheelchair sometimes? Or any of you with kids in a similar >situation? I am feeling at a bit of a loss at the moment and it would mean >alot to hear from you. > > Thanks again, > Lani > > >--------------------------------- >Yahoo!7 Mail has just got even bigger and better with unlimited storage on >all webmail accounts. Find out more. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2007 Report Share Posted July 13, 2007 Hi Lani....After my daughter developed this the NSG thought she should have surgery again. She has had a total of three but she does still on rare occasions have that feeling that her legs won't carry her and she will have to sit down in the mall or not rise from her chair at school until she knows her legs will hold her. My understanding is that it isn't any sort of muscle weakness but as someone posted, mixed up signals among brain and spinal cord and muscles due to the cord injury. Hopefully, it won't be too much of an issue at school since they don't do long distances very much. A meeting with you and your daughter and the school counselor and nurse might be the way to go. As young as she is, it might be best to include her in these discussions. If you are matter of fact about it, I would guess she will understand that this is just an issue that she has to address. If it progresses, your NSG may suggest a second surgery. Many hugs from a mom to a mom...Randee --- Lani Mcrae wrote: > Hi all, > I'm in a bit of a situation where i need to talk > to you guys as a sounding board as well to hear from > others who are facing similar struggles and may have > advice for me. > > It is almost a year since my 4 1/2 year old > daughter, Ella was detethered. If she is walking > short distances, Ella appears fine and on looking at > her you wouldn't believe she has a worry in the > world. She walks, she runs and we feel blessed! > However, if she needs to walk for any length of time > or distance her legs become very weak and she just > can't do it. > > Her neurologist has explained to us that the nerve > messages to her legs have been affected and this > causes the problems. Up to now we have used her > jogger pram in these situations and this has helped > her heaps. But now she is too big for her pram and > feels way too old for it! Like i said she is by no > means affected to the point where she needs a > wheelchair all of the time and we feel very lucky. > But, today after another difficult shopping trip of > trying to carry my 20kg daughter or find a shopping > trolley that i can put her in that will see us > through the distance between the shops i feel sad > and confronted by something that i have obviously > been trying to avoid. > > Her physiotherapist has suggested we order a > wheelchair for these times. She starts school next > year and i worry so much for her. My question is... > are there many of you out there who appear to walk > fine, even run and yet need a wheelchair sometimes? > Or any of you with kids in a similar situation? I am > feeling at a bit of a loss at the moment and it > would mean alot to hear from you. > > Thanks again, > Lani > > > --------------------------------- > Yahoo!7 Mail has just got even bigger and better > with unlimited storage on all webmail accounts. Find > out more. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. http://new.toolbar.yahoo.com/toolbar/features/mail/index.php Quote Link to comment Share on other sites More sharing options...
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