Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 I'm sane and have the documentation to prove it. on the other hand... Lenny Yourth Hubby to Daddy to Elissa (6), LJ (5), (Almost 4), and (15 months) is our Liss Kid. She can walk, run, and even slow down and turn as well as stop. She can also hop, knows her ABC's and feeds herself about as neatly as the lionesses on National Geographic. Our AIM/YAHOO screen name is Yourthclan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 I'm sane and have the documentation to prove it. on the other hand... Lenny Yourth Hubby to Daddy to Elissa (6), LJ (5), (Almost 4), and (15 months) is our Liss Kid. She can walk, run, and even slow down and turn as well as stop. She can also hop, knows her ABC's and feeds herself about as neatly as the lionesses on National Geographic. Our AIM/YAHOO screen name is Yourthclan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Hi , welcome to the group. Our third child Hannah has diffuse, bilateral PMG, CP, CVI, intractable seizures, and is also on the ketogenic diet. She is totally tube fed. She is also gorgeous with long brown curly hair. Has an awsome smile and a naughty giggle, but is not filled with energy. She is non mobile and non verbal, and a delight to have around. Have I seen your emails at the ketogenic diet list at Yahoo, or am I just imagining it? Hannah has been on the diet for 21 months so far. How about ? Has it helped? Hannah wont ever be sz free, but the diet helped her more than anyof the 6 drugs we've tried. We even managed to totally wean one of her drugs. Hope to hear more about soon. (Hannah's mum, Australia) ----- Original Message ----- From: rfsweetpea@... ne, 's Mom. is five with Lissencephaly (sbh), microcephaly, cortical visual impairment and seizures. She is on the ketogenic diet. is gorgeous with long, blonde curly hair. Has an awesome laugh & is filled with energy. She's a real joy to know. We live in New Jersey & I'm a single Mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Hi , welcome to the group. Our third child Hannah has diffuse, bilateral PMG, CP, CVI, intractable seizures, and is also on the ketogenic diet. She is totally tube fed. She is also gorgeous with long brown curly hair. Has an awsome smile and a naughty giggle, but is not filled with energy. She is non mobile and non verbal, and a delight to have around. Have I seen your emails at the ketogenic diet list at Yahoo, or am I just imagining it? Hannah has been on the diet for 21 months so far. How about ? Has it helped? Hannah wont ever be sz free, but the diet helped her more than anyof the 6 drugs we've tried. We even managed to totally wean one of her drugs. Hope to hear more about soon. (Hannah's mum, Australia) ----- Original Message ----- From: rfsweetpea@... ne, 's Mom. is five with Lissencephaly (sbh), microcephaly, cortical visual impairment and seizures. She is on the ketogenic diet. is gorgeous with long, blonde curly hair. Has an awesome laugh & is filled with energy. She's a real joy to know. We live in New Jersey & I'm a single Mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Hi , welcome to the group. Our third child Hannah has diffuse, bilateral PMG, CP, CVI, intractable seizures, and is also on the ketogenic diet. She is totally tube fed. She is also gorgeous with long brown curly hair. Has an awsome smile and a naughty giggle, but is not filled with energy. She is non mobile and non verbal, and a delight to have around. Have I seen your emails at the ketogenic diet list at Yahoo, or am I just imagining it? Hannah has been on the diet for 21 months so far. How about ? Has it helped? Hannah wont ever be sz free, but the diet helped her more than anyof the 6 drugs we've tried. We even managed to totally wean one of her drugs. Hope to hear more about soon. (Hannah's mum, Australia) ----- Original Message ----- From: rfsweetpea@... ne, 's Mom. is five with Lissencephaly (sbh), microcephaly, cortical visual impairment and seizures. She is on the ketogenic diet. is gorgeous with long, blonde curly hair. Has an awesome laugh & is filled with energy. She's a real joy to know. We live in New Jersey & I'm a single Mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 In a message dated 6/6/02 2:24:09 AM Central Daylight Time, suvi.sairanen@... writes: > My name is Suvi, my husband is Jari and we have a lovely 4 year old daughter > Suvi, Welcome to the group! I'm so glad that Salla is doing so very well! I can't imagine your trying time going thru that surgery with Salla. <hugs> So glad you found the group.. You'll meet some of the finest people in the world right here. K. Father to Cody Colton PBNH & Polymicrogyria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 In a message dated 6/6/02 2:24:09 AM Central Daylight Time, suvi.sairanen@... writes: > My name is Suvi, my husband is Jari and we have a lovely 4 year old daughter > Suvi, Welcome to the group! I'm so glad that Salla is doing so very well! I can't imagine your trying time going thru that surgery with Salla. <hugs> So glad you found the group.. You'll meet some of the finest people in the world right here. K. Father to Cody Colton PBNH & Polymicrogyria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Welsome to our group. You'll find us a very informative and supportive group. in Houston, Texas USA --- Suvi Sairanen wrote: > Hi All, > > In searching the web under polymicrogyria, I > discovered Your Yahoo-group. In my short message to > Your moderators I promised to introduce us more > properly... > > My name is Suvi, my husband is Jari and we have a > lovely 4 year old daughter named Salla. We live in > Finland ( Scandinavia ). Salla was diagnosed with > Congenital Bilateral Perisylvian Syndrome ( on a MRI > ) at the age of 1,5 years. In CBPS the PMG patches > are bilateral and in the region inside and > surrounding the Sylvian fissures. > > CBPS causes for Salla also left sided hemiparesis. > She walkes assisted, but mostly she moves by her > bum. Epilepsy started when she was 2 years old and > that turned to be the biggest problem during the > last winter, all her skills started to go downhill. > We spent weeks and weeks at the hospital, tried all > possible medicines, but it turned out that her > epilepsy seemed to be refractory to all medicines. > She had only atypical absence seizures ( petit mal ) > lasting few seconds, but she had them several tens > per hour. So at the end of January she had the > Corpus Callosotomy operation. I was terrified, but > everything went well and she recovered splendidly. > Now she has been seizurefree ever since and she has > only one medicine ( Deprakine, valproate ). > > After the operation she has been progressing very > quickly in all her skills. She is having PT two > times a week, OT and speech therapy once a week. She > communicates with eyes, smiles, laughter, sounds, > shakes head for no, sign language ( at the moment 20 > signs ), she has three words: " aiti " - mom, " hei " - > hello and " ei " - no. She is getting better and better > in eating. It's very messy, but she is learning to > use the spoon and to chew her food. I still chop up > difficult food, but we are progressing... > > Salla loves water, we joined a swimming group for > disabled children, now she is diving and enjoying > the swimming assisted. She loves also music, > video's, especially signed musicv. and familyvideos, > playing in the sandbox, tricycle riding ( assisted > ), boating... > > She gives You so much , even though the life is > sometimes quite stressing, I must say that she > develops us parents mentally more than we can ever > raise her. We do owe her a lot! > > Pls, do correct me if I say something funny, > expressing my thoughts in english, ain't always so > easy. > > Love to You all... > > Suvi, mom to Salla. > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Welsome to our group. You'll find us a very informative and supportive group. in Houston, Texas USA --- Suvi Sairanen wrote: > Hi All, > > In searching the web under polymicrogyria, I > discovered Your Yahoo-group. In my short message to > Your moderators I promised to introduce us more > properly... > > My name is Suvi, my husband is Jari and we have a > lovely 4 year old daughter named Salla. We live in > Finland ( Scandinavia ). Salla was diagnosed with > Congenital Bilateral Perisylvian Syndrome ( on a MRI > ) at the age of 1,5 years. In CBPS the PMG patches > are bilateral and in the region inside and > surrounding the Sylvian fissures. > > CBPS causes for Salla also left sided hemiparesis. > She walkes assisted, but mostly she moves by her > bum. Epilepsy started when she was 2 years old and > that turned to be the biggest problem during the > last winter, all her skills started to go downhill. > We spent weeks and weeks at the hospital, tried all > possible medicines, but it turned out that her > epilepsy seemed to be refractory to all medicines. > She had only atypical absence seizures ( petit mal ) > lasting few seconds, but she had them several tens > per hour. So at the end of January she had the > Corpus Callosotomy operation. I was terrified, but > everything went well and she recovered splendidly. > Now she has been seizurefree ever since and she has > only one medicine ( Deprakine, valproate ). > > After the operation she has been progressing very > quickly in all her skills. She is having PT two > times a week, OT and speech therapy once a week. She > communicates with eyes, smiles, laughter, sounds, > shakes head for no, sign language ( at the moment 20 > signs ), she has three words: " aiti " - mom, " hei " - > hello and " ei " - no. She is getting better and better > in eating. It's very messy, but she is learning to > use the spoon and to chew her food. I still chop up > difficult food, but we are progressing... > > Salla loves water, we joined a swimming group for > disabled children, now she is diving and enjoying > the swimming assisted. She loves also music, > video's, especially signed musicv. and familyvideos, > playing in the sandbox, tricycle riding ( assisted > ), boating... > > She gives You so much , even though the life is > sometimes quite stressing, I must say that she > develops us parents mentally more than we can ever > raise her. We do owe her a lot! > > Pls, do correct me if I say something funny, > expressing my thoughts in english, ain't always so > easy. > > Love to You all... > > Suvi, mom to Salla. > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Welcome-it sounds as if Salla is doing very well. My son Izaiah is 9 mths old and has diffuse PMG as well as many other things. He is developmantally dealyed. I was wondering-what is the surgery you were talking about? Was it to help w/ seizures? Izaiah's Corpus Callosum is underdeveloped anyway-but he has been known to have myclonic seizures at times. I was just wondering. By the way-you have excellent English!!! http://izaiahnc.tripod.com/ Jen and Izaiah-9 mths w/ mihf HPE, diffuse PMG, CVI, cleft palate, myclonic seizures (not for over a mth) -- In polymicrogyria@y..., " Suvi Sairanen " <suvi.sairanen@e...> wrote: > Hi All, > > In searching the web under polymicrogyria, I discovered Your Yahoo- group. In my short message to Your moderators I promised to introduce us more properly... > > My name is Suvi, my husband is Jari and we have a lovely 4 year old daughter named Salla. We live in Finland ( Scandinavia ). Salla was diagnosed with Congenital Bilateral Perisylvian Syndrome ( on a MRI ) at the age of 1,5 years. In CBPS the PMG patches are bilateral and in the region inside and surrounding the Sylvian fissures. > > CBPS causes for Salla also left sided hemiparesis. She walkes assisted, but mostly she moves by her bum. Epilepsy started when she was 2 years old and that turned to be the biggest problem during the last winter, all her skills started to go downhill. We spent weeks and weeks at the hospital, tried all possible medicines, but it turned out that her epilepsy seemed to be refractory to all medicines. She had only atypical absence seizures ( petit mal ) lasting few seconds, but she had them several tens per hour. So at the end of January she had the Corpus Callosotomy operation. I was terrified, but everything went well and she recovered splendidly. Now she has been seizurefree ever since and she has only one medicine ( Deprakine, valproate ). > > After the operation she has been progressing very quickly in all her skills. She is having PT two times a week, OT and speech therapy once a week. She communicates with eyes, smiles, laughter, sounds, shakes head for no, sign language ( at the moment 20 signs ), she has three words: " aiti " - mom, " hei " - hello and " ei " - no. She is getting better and better in eating. It's very messy, but she is learning to use the spoon and to chew her food. I still chop up difficult food, but we are progressing... > > Salla loves water, we joined a swimming group for disabled children, now she is diving and enjoying the swimming assisted. She loves also music, video's, especially signed musicv. and familyvideos, playing in the sandbox, tricycle riding ( assisted ), boating... > > She gives You so much , even though the life is sometimes quite stressing, I must say that she develops us parents mentally more than we can ever raise her. We do owe her a lot! > > Pls, do correct me if I say something funny, expressing my thoughts in english, ain't always so easy. > > Love to You all... > > Suvi, mom to Salla. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Welcome-it sounds as if Salla is doing very well. My son Izaiah is 9 mths old and has diffuse PMG as well as many other things. He is developmantally dealyed. I was wondering-what is the surgery you were talking about? Was it to help w/ seizures? Izaiah's Corpus Callosum is underdeveloped anyway-but he has been known to have myclonic seizures at times. I was just wondering. By the way-you have excellent English!!! http://izaiahnc.tripod.com/ Jen and Izaiah-9 mths w/ mihf HPE, diffuse PMG, CVI, cleft palate, myclonic seizures (not for over a mth) -- In polymicrogyria@y..., " Suvi Sairanen " <suvi.sairanen@e...> wrote: > Hi All, > > In searching the web under polymicrogyria, I discovered Your Yahoo- group. In my short message to Your moderators I promised to introduce us more properly... > > My name is Suvi, my husband is Jari and we have a lovely 4 year old daughter named Salla. We live in Finland ( Scandinavia ). Salla was diagnosed with Congenital Bilateral Perisylvian Syndrome ( on a MRI ) at the age of 1,5 years. In CBPS the PMG patches are bilateral and in the region inside and surrounding the Sylvian fissures. > > CBPS causes for Salla also left sided hemiparesis. She walkes assisted, but mostly she moves by her bum. Epilepsy started when she was 2 years old and that turned to be the biggest problem during the last winter, all her skills started to go downhill. We spent weeks and weeks at the hospital, tried all possible medicines, but it turned out that her epilepsy seemed to be refractory to all medicines. She had only atypical absence seizures ( petit mal ) lasting few seconds, but she had them several tens per hour. So at the end of January she had the Corpus Callosotomy operation. I was terrified, but everything went well and she recovered splendidly. Now she has been seizurefree ever since and she has only one medicine ( Deprakine, valproate ). > > After the operation she has been progressing very quickly in all her skills. She is having PT two times a week, OT and speech therapy once a week. She communicates with eyes, smiles, laughter, sounds, shakes head for no, sign language ( at the moment 20 signs ), she has three words: " aiti " - mom, " hei " - hello and " ei " - no. She is getting better and better in eating. It's very messy, but she is learning to use the spoon and to chew her food. I still chop up difficult food, but we are progressing... > > Salla loves water, we joined a swimming group for disabled children, now she is diving and enjoying the swimming assisted. She loves also music, video's, especially signed musicv. and familyvideos, playing in the sandbox, tricycle riding ( assisted ), boating... > > She gives You so much , even though the life is sometimes quite stressing, I must say that she develops us parents mentally more than we can ever raise her. We do owe her a lot! > > Pls, do correct me if I say something funny, expressing my thoughts in english, ain't always so easy. > > Love to You all... > > Suvi, mom to Salla. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Hi Suvi, Welcome to the group and, may I say, there is nothing at all wrong with your english. In fact you express yourself extremely well, and I particularly identified with your statement " She gives You so much , even though the life is sometimes quite stressing, I must say that she develops us parents mentally more than we can ever raise her. We do owe her a lot! " That was profound! It seems as though you have well and truly come to terms with Salla's diagnosis, although like all of us I am sure you have your bad moments. How wonderful that her seizures have improved so well since the surgery, and I hope that her motor skills and communication continue to progress. With all the assistance you give her I am sure she will have the best possible chance to grow and develop to her full potential. Looking forward to hearing more about your family, and about Salla in particular. Regards - from Melbourne, Australia; mum to Hannah, (5yo; polymicrogyria, variety of seizure types, ketogenic diet since 6/00 which has reduced seizures, spastic quad.CP and orthopedic issues that go with it, non-mobile, cortical vision impairment, possible conductive hearing loss, swallowing and respiratory issues, non-verbal, global dev. delays, 100% gtube fed by Bard button, and a brilliant smile) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Hi Suvi, Welcome to the group and, may I say, there is nothing at all wrong with your english. In fact you express yourself extremely well, and I particularly identified with your statement " She gives You so much , even though the life is sometimes quite stressing, I must say that she develops us parents mentally more than we can ever raise her. We do owe her a lot! " That was profound! It seems as though you have well and truly come to terms with Salla's diagnosis, although like all of us I am sure you have your bad moments. How wonderful that her seizures have improved so well since the surgery, and I hope that her motor skills and communication continue to progress. With all the assistance you give her I am sure she will have the best possible chance to grow and develop to her full potential. Looking forward to hearing more about your family, and about Salla in particular. Regards - from Melbourne, Australia; mum to Hannah, (5yo; polymicrogyria, variety of seizure types, ketogenic diet since 6/00 which has reduced seizures, spastic quad.CP and orthopedic issues that go with it, non-mobile, cortical vision impairment, possible conductive hearing loss, swallowing and respiratory issues, non-verbal, global dev. delays, 100% gtube fed by Bard button, and a brilliant smile) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Judy, Welcome to the group that no one wants to be in. If you go to the homepage and click on the archives you will learn a great deal about Lewybody Disease and the day to day experiences our loved ones suffer with. We are a group of caregivers that share our own experiences with one another. You will find that having people to share this with is a great source of comfort. This disease is so complex and so fuucuating, changeing from day to day and hour to hour.One day they can seem like they are improving and getting better and a few days later you wouldn't think they have much time left. There are many types of medications with diffrent results for diffrent patients. You really have to keep a close eye on these because some of them can have a devastating affect. There are also some links that lead to medical diaganosis of Lewybody. I am sure by the end of the day you will receive many posts sharing many experiences. I am not really all that good at explaining things but a lot of members are. Just keep reading and if you can tell us how long your dad has been having problems we can give you and idea of what to expect. Just hond on tight, you are in for quite a ride. Good luck, Shirley > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: introduction >Date: Thu, 07 Nov 2002 16:04:51 -0000 > >Hi, my name is Judy, I joined this group last night after spending >the day with my parents. We made a trip to the neurologist and were >told that Dad had " probable " LBD. a sleep study report was not in at >the time, but the Dr. seemed pretty sure. I had never heard of this, >so I came home and got on the computer. disapointed that i found not >much more info than the Dr. gave, i joined this group in hopes of >gaining understanding. addmittedly i was very tired and did not spend >a lot of time looking. will continue searching today. Any info >anyone can relate will be appreciated. Thanks, Judy > _________________________________________________________________ The new MSN 8: advanced junk mail protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 Hi Judy, welcome to the group. I also joined this group a short time ago in search of answers and knowledge and found so much more than I ever imagined. The wisdom, knowledge, experiences, and friendships are real, and I hope you find what you are looking for, I did. You can ask anything, and learn everything about every aspect of Lewybody from the caregivers side to the patients. Welcome aboard, Dennis introduction Hi, my name is Judy, I joined this group last night after spending the day with my parents. We made a trip to the neurologist and were told that Dad had " probable " LBD. a sleep study report was not in at the time, but the Dr. seemed pretty sure. I had never heard of this, so I came home and got on the computer. disapointed that i found not much more info than the Dr. gave, i joined this group in hopes of gaining understanding. addmittedly i was very tired and did not spend a lot of time looking. will continue searching today. Any info anyone can relate will be appreciated. Thanks, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 Judy, Welcome and what do you want to know? This disease has so many twists and turns, you will need some info at times and at other times you'll need other info. You can go to group past postings and get just about any answer you need. We know you are probably feeling a bit overwhelmed. It will continue that way until the end and I am still overwhelmed. The more specific answer you ask for, the less over whelmed you will feel with the answers. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Day, Welcome. Sorry to hear you are severe with this disease. I would start by going through the archives of this group and also checking out asthmastory.com as you have not had asthma since birth apparently. Good luck and ask any questions. Sue. > Hello everyone.I am a 24 year old woman who has dealt with asthma > for the last 8 years.My asthma is severe, and I use a nebulizer > several times a day.I use the medicines severent, pulmicort > respules, accolate, nexium(reflux affects my asthma), zyrtec for > allergies, combivent, albuterol, and I'm supposed to use > theophylline, but after 4 days I stopped.I look forward to learning > more about each of you, and also how to manage my illness. > Day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Yeouch that is a bunch, just for asthma. Why both Combivent and Albuterol? Albuterol is already in the Combivent. Why did you stop the theophylline? Have you discussed that with your doctors? ;-> Introduction ;-> ;-> ;-> Hello everyone.I am a 24 year old woman who has dealt ;-> with asthma ;-> for the last 8 years.My asthma is severe, and I use a nebulizer ;-> several times a day.I use the medicines severent, pulmicort ;-> respules, accolate, nexium(reflux affects my asthma), zyrtec for ;-> allergies, combivent, albuterol, and I'm supposed to use ;-> theophylline, but after 4 days I stopped.I look forward to learning ;-> more about each of you, and also how to manage my illness. ;-> Day ;-> ;-> ;-> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Yeouch that is a bunch, just for asthma. Why both Combivent and Albuterol? Albuterol is already in the Combivent. Why did you stop the theophylline? Have you discussed that with your doctors? ;-> Introduction ;-> ;-> ;-> Hello everyone.I am a 24 year old woman who has dealt ;-> with asthma ;-> for the last 8 years.My asthma is severe, and I use a nebulizer ;-> several times a day.I use the medicines severent, pulmicort ;-> respules, accolate, nexium(reflux affects my asthma), zyrtec for ;-> allergies, combivent, albuterol, and I'm supposed to use ;-> theophylline, but after 4 days I stopped.I look forward to learning ;-> more about each of you, and also how to manage my illness. ;-> Day ;-> ;-> ;-> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 --hi how are you doing. what dose of pulmicort are you taking, and how often are you using your svn machine. are you seeing an asthma specialist. matt- In asthma , " daystarlounge " <daystarlounge@y...> wrote: > Hello everyone.I am a 24 year old woman who has dealt with asthma > for the last 8 years.My asthma is severe, and I use a nebulizer > several times a day.I use the medicines severent, pulmicort > respules, accolate, nexium(reflux affects my asthma), zyrtec for > allergies, combivent, albuterol, and I'm supposed to use > theophylline, but after 4 days I stopped.I look forward to learning > more about each of you, and also how to manage my illness. > Day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 --hi how are you doing. what dose of pulmicort are you taking, and how often are you using your svn machine. are you seeing an asthma specialist. matt- In asthma , " daystarlounge " <daystarlounge@y...> wrote: > Hello everyone.I am a 24 year old woman who has dealt with asthma > for the last 8 years.My asthma is severe, and I use a nebulizer > several times a day.I use the medicines severent, pulmicort > respules, accolate, nexium(reflux affects my asthma), zyrtec for > allergies, combivent, albuterol, and I'm supposed to use > theophylline, but after 4 days I stopped.I look forward to learning > more about each of you, and also how to manage my illness. > Day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 The combivent is my rescue inhaler(which sometimes does not work), and the albuterol goes in my nebulizer.I too think I am on way too much medicine.I only listed the ones for asthma hehe.I went off the theophylline, as after 4 days, it was having no affect, and was making me jittery all the time.I haven't told my doctor yet.I also tend to get too many antibiotics, I think.I just finished a course this week, and I feel sick as a dog.Ear ache, body aches, weird stuff coming out the nose, sorry for the graph.Yet I know in another month, I will be back on more antibiotics.Thats and prednisone has been my stay out of the hospital free cards hehe, when it gets real bad. Day > Yeouch that is a bunch, just for asthma. Why both Combivent and > Albuterol? Albuterol is already in the Combivent. Why did you stop the > theophylline? Have you discussed that with your doctors? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 The combivent is my rescue inhaler(which sometimes does not work), and the albuterol goes in my nebulizer.I too think I am on way too much medicine.I only listed the ones for asthma hehe.I went off the theophylline, as after 4 days, it was having no affect, and was making me jittery all the time.I haven't told my doctor yet.I also tend to get too many antibiotics, I think.I just finished a course this week, and I feel sick as a dog.Ear ache, body aches, weird stuff coming out the nose, sorry for the graph.Yet I know in another month, I will be back on more antibiotics.Thats and prednisone has been my stay out of the hospital free cards hehe, when it gets real bad. Day > Yeouch that is a bunch, just for asthma. Why both Combivent and > Albuterol? Albuterol is already in the Combivent. Why did you stop the > theophylline? Have you discussed that with your doctors? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Hello Matt, I am on .5 mg/2 ml of pulmicort respules every 12 hours, via nebulizer.My old doc told me to use my machine every 2-3 hours(it gets that bad).However I do have some days where's its more spaced out to every 4-6 hours.My doctor gave me a referral, and I will be making an appointment soon.My last visit with an asthma specialist was about 3 years ago.I learned that I have some lung damage, etc. Daystar > --hi > how are you doing. what dose of pulmicort are you taking, and how > often are you using your svn machine. > are you seeing an asthma specialist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Hello Matt, I am on .5 mg/2 ml of pulmicort respules every 12 hours, via nebulizer.My old doc told me to use my machine every 2-3 hours(it gets that bad).However I do have some days where's its more spaced out to every 4-6 hours.My doctor gave me a referral, and I will be making an appointment soon.My last visit with an asthma specialist was about 3 years ago.I learned that I have some lung damage, etc. Daystar > --hi > how are you doing. what dose of pulmicort are you taking, and how > often are you using your svn machine. > are you seeing an asthma specialist. Quote Link to comment Share on other sites More sharing options...
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