Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Wait, I thought this was a self help group :)Great to see all the new e-faces round here!There will be donuts and coffee after the meeting, right?Best to all,GarretSent from my iPhone Hi..me name is . (doesn't that sound like the begining of some sort of self-help or AA meeting?) I live in Oregon and have been drinking raw milk for a few months now and love it. There is a lovely farm here that sells eggs, milk, chickens, stock, cheese making things, etc. I am here to see what you all are doing and loving with the raw milk. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Hi ! Where abouts in Oregon are you? Where is that farm?? Robin Introduction Hi..me name is . (doesn't that sound like the begining of some sort of self-help or AA meeting?)I live in Oregon and have been drinking raw milk for a few months now and love it. There is a lovely farm here that sells eggs, milk, chickens, stock, cheese making things, etc. I am here to see what you all are doing and loving with the raw milk. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2009 Report Share Posted June 11, 2009 Hey there Robin... I live in West Linn and work in Sherwood. The farm I go to is out in Yamhill and is called Kookoolan Farms. Here is their website... http://www.kookoolanfarms.com/ . They are wonderful. > > Hi ! Where abouts in Oregon are you? Where is that farm?? > > Robin > > > Introduction > > > > > > Hi..me name is . (doesn't that sound like the begining of some sort of self-help or AA meeting?) > I live in Oregon and have been drinking raw milk for a few months now and love it. There is a lovely farm here that sells eggs, milk, chickens, stock, cheese making things, etc. I am here to see what you all are doing and loving with the raw milk. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Hi Barbara & Welcome! It's good to have you on our journey! ________________________________ From: BlueRose <Gatorgranny@...> weightloss Sent: Friday, July 17, 2009 11:44:19 AM Subject: Introduction Hello Everyone, I am Barbara from Florida. I am almost 61 yrs old. I have struggled with overeating, undereating, compulsive eating, ever since I was around 11yrs old. That is when I started putting on weight. I have been on most every diet known, starting with Mom putting me on the Adys candies to curb my appetite when I was 11. I have lost a 100 pounds many times over to just go right back to eating again and gaining it right back. I used to starve myself then binge eat, then starve myself again only to do it all over again. Things started taking on a different role when I joined OA (overeaters anonymous) over 12 yrs ago. I went through all the steps and learned a lot, yet the weight has not budged. I have pretty much maintained the same weight give or take 5 pounds for the last 6 yrs. Emotionally, and Spiritually the OA program has helped me. There was still something missing. I got online and found IOWL and downloaded the podcasts to my MP3 player. I have been soaking each podcast up for the last 12 days. I have found a new freedom with food already. I have learned to take care of myself and I have been given the desire to do so since listening and doing what suggested on the podcasts. I have a lot more practicing to do and applying the suggestions from IOWL but I feel like I am on my way to wellness and better health. Thank you and everyone here I am grateful to have joined this support group, and I look forward to hearing about everyone else's journey to wellness. Barbara in Fl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Thank you Colleen. ) Good to be here! Hi Barbara & Welcome! It's good to have you on our journey! ________________________________ From: BlueRose <Gatorgranny@...> weightloss Sent: Friday, July 17, 2009 11:44:19 AM Subject: Introduction Hello Everyone, I am Barbara from Florida. I am almost 61 yrs old. I have struggled with overeating, undereating, compulsive eating, ever since I was around 11yrs old. That is when I started putting on weight. I have been on most every diet known, starting with Mom putting me on the Adys candies to curb my appetite when I was 11. I have lost a 100 pounds many times over to just go right back to eating again and gaining it right back. I used to starve myself then binge eat, then starve myself again only to do it all over again. Things started taking on a different role when I joined OA (overeaters anonymous) over 12 yrs ago. I went through all the steps and learned a lot, yet the weight has not budged. I have pretty much maintained the same weight give or take 5 pounds for the last 6 yrs. Emotionally, and Spiritually the OA program has helped me. There was still something missing. I got online and found IOWL and downloaded the podcasts to my MP3 player. I have been soaking each podcast up for the last 12 days. I have found a new freedom with food already. I have learned to take care of myself and I have been given the desire to do so since listening and doing what suggested on the podcasts. I have a lot more practicing to do and applying the suggestions from IOWL but I feel like I am on my way to wellness and better health. Thank you and everyone here I am grateful to have joined this support group, and I look forward to hearing about everyone else's journey to wellness. Barbara in Fl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2009 Report Share Posted October 28, 2009 Hi roro1568 - and everyone... roro1568 I dont know if I can giv eyou any advice but I can say that I am in the exact same place as you are. I never had to watch my weight as a younger person and my weight gain didnt come until after I had kids. I have four children and after the 3rd i had lost the weight (thru vigilant exercise and eating right) and was loving my body and life, after my 4th child (she is 4 now) my body has never been the same. I am 41 years old also. I am a binger and overeater also. I do my eating during the day when my husband isnt home and my kids are at school (so I hide it) and it has caught up to me. I am about 25 pounds overweight and gaining and gaining. I am hoping that my plan of listening to the podcasts while I exercise will push me in the right direction. I started yesterday with walking on a treadmill while listening to 2 podcasts. My resolve is to start with little steps 1. listen to 2 podcasts per day - starting from #1 and 2. walk everyday until I can get the resolve to exercise harder. The food overeating/compulsion Im hoping I can tackle as I go. I dont want to count points although I have figured that watching (counting) calories might be part of the battle. > > Hi all! I just started listining to the podcasts a few weeks ago and I'm loving it! I never stuggled with my weight when i was a teen - 103 pounds until i got married at 24. Was able to eat anything i wanted and overindulged alot. Now at 41 I'm a compulsive overeater and binger. I did weight watchers and dropped 20 pounds - fell off the wagon - not 22 pounds heaver than i was when i stated. Having a hard time staying on course. Don't want to count calories and points. Trying to be more active. Any advise as i start this journey with you? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Welcome, Dawn, and thanks for posting! I too am a fitness instructor that goes up and down on the scale, always a struggle! But everyone here is so encouraging and supportive, you're in the right place!  I look forward to reading your workout reviews! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Welcome to the group Dawn!You've made a great choice by joining this group. Here you will not only find enabling DVD recommendations, you will also find support for exercising, healthy eating and weight loss.Where are you from? I live in Michigan. aka JenFrom: carrymemom <carrymemom@...>Subject: Introduction Date: Sunday, January 3, 2010, 11:15 PM Hi, folks! I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group. I used to be an advanced exerciser, even taught classes. Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process. As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes. Though, I am ready to take it up a notch, because I still have a long journey ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My eating has changed in a lot of ways for the better, but I slip too often. Old habits of turning to food when I am bored or emotional. Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week. I could use my extra points for a 'cheat' meal or two during the week. I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me. I am learning so much in the process, and that is the point anyway. I look forward to getting to know you! I posted a photo of me with my two precious ones from 04/09. Best, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Hi Dawn,Welcome to the group, and congrats on your weightloss! I know how fabulous it feels to be going in the right direction!I look forward to reading more of your posts ;)Darcy On Sun, Jan 3, 2010 at 10:16 PM, carrymemom <carrymemom@...> wrote:  Hi, folks! I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group. I used to be an advanced exerciser, even taught classes. Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process. As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes. Though, I am ready to take it up a notch, because I still have a long journey ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My eating has changed in a lot of ways for the better, but I slip too often. Old habits of turning to food when I am bored or emotional. Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week. I could use my extra points for a 'cheat' meal or two during the week. I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me. I am learning so much in the process, and that is the point anyway. I look forward to getting to know you! I posted a photo of me with my two precious ones from 04/09. Best, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 hi dawn welcome!!!! what workouts are you into right now?kassia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Welcome Dawn!I had a similar experience. I was really an athlete - competed in beach volleyball, biked long distance, taught spinning and was a personal training to pay for my PhD. I finished up my education and moved to an area where I was not happy and gained lots of weight (I didn't have kids so just me to blame!). I moved back to town I love dropped about 20 lbus and am currently trying to drop 20-30 more lbs. Right now I am recovering from hysterectomy so not exercising until end of month but learning from everyone here. Good luck.PS I LOVE turbo jam, turbo kick and chalean.... I hope when I can lift weights again to do Chalean- but for next 5 weeks can't lift... just walking.judy in DCFrom: carrymemom <carrymemom@...> Sent: Sun, January 3, 2010 11:15:55 PMSubject: Introduction Hi, folks! I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group. I used to be an advanced exerciser, even taught classes. Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process. As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes. Though, I am ready to take it up a notch, because I still have a long journey ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My eating has changed in a lot of ways for the better, but I slip too often. Old habits of turning to food when I am bored or emotional. Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week. I could use my extra points for a 'cheat' meal or two during the week. I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me. I am learning so much in the process, and that is the point anyway. I look forward to getting to know you! I posted a photo of me with my two precious ones from 04/09. Best, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Hi Dawn,Welcome, and congratulations for your achievements! WW is such a good program, and good for you on the exercise. Best of luck with your goals -- and it's great that perfection isn't one of them. I'll go check out the pics... On Sun, Jan 3, 2010 at 8:16 PM, carrymemom <carrymemom@...> wrote: Hi, folks! I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group. I used to be an advanced exerciser, even taught classes.  Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process.  As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009.  I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness.  I have been exercising at least 4-5 days a week and feel terrific.  I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes. Though, I am ready to take it up a notch, because I still have a long journey ahead.  I want 6 days/week of kicking it hard with my workouts--no excuses.  My eating has changed in a lot of ways for the better, but I slip too often.  Old habits of turning to food when I am bored or emotional.  Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week.  I could use my extra points for a 'cheat' meal or two during the week. I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me.  I am learning so much in the process, and that is the point anyway. I look forward to getting to know you!  I posted a photo of me with my two precious ones from 04/09. Best, Dawn ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Welcome to the group Dawn! I love that name! My best friend in middle school was named Dawn.I always wonder what happened to her. congratulations on your success thus far! I look forward to reading your posts! a > > Hi, folks! > > I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group. > > I used to be an advanced exerciser, even taught classes. Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process. As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes. > > Though, I am ready to take it up a notch, because I still have a long journey ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My eating has changed in a lot of ways for the better, but I slip too often. Old habits of turning to food when I am bored or emotional. Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week. I could use my extra points for a 'cheat' meal or two during the week. > > I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me. I am learning so much in the process, and that is the point anyway. > > I look forward to getting to know you! I posted a photo of me with my two precious ones from 04/09. > > Best, > Dawn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Thank you for the kind welcome, everyone! I am a exercise video addict, so you all are definitely not a help in that area! I just purchased a couple a new Cathes because of the discussion here! I am hitting my second round of CLX; almost through with the Burn phase, then hitting Push. I am doing TJ and Turbokick for cardio. We live 15 minutes from Boulder, CO in Longmont. Hubby teaches at University of CO at Boulder. I was a middle school teacher prior to staying at home with the kiddos. We get the mountains everyday! Have a great day, everyone! Dawn P.S. I am going to try a post a picture again. Wasn't able to do it last night--some webpage error. From: <volleyjen0416@...> Sent: Sun, January 3, 2010 10:22:58 PMSubject: Re: Introduction Welcome to the group Dawn!You've made a great choice by joining this group. Here you will not only find enabling DVD recommendations, you will also find support for exercising, healthy eating and weight loss.Where are you from? I live in Michigan. aka Jen From: carrymemom <carrymemom (DOT) com>Subject: IntroductionDate: Sunday, January 3, 2010, 11:15 PM Hi, folks!I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group.I used to be an advanced exerciser, even taught classes. Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process. As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes.Though, I am ready to take it up a notch, because I still have a long journey ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My eating has changed in a lot of ways for the better, but I slip too often. Old habits of turning to food when I am bored or emotional. Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week. I could use my extra points for a 'cheat' meal or two during the week.I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me. I am learning so much in the process, and that is the point anyway.I look forward to getting to know you! I posted a photo of me with my two precious ones from 04/09.Best,Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Welcome, Dawn. Congratulations on your progress! Marla (fairly new here, too) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Welcome, Cindi. It's rare for a doctor to dx MBL defect. Are you at a Children's hospital? OH? There is another mom here whose kids have this. Her son was severe and had bone marrow transplant in OH. She's very busy be maybe she'll chime in. SCIG was a G-d send to us. kids who have established PIDs can not be cured by ENT surgeries. So sorry your daughter had to go through this. They typically need certain antimicrobial drugs/biodrugs or immune reconstitution. Glad she's getting what she needs. best wishes Mom to cvider, 8 Sent on the Now Network™ from my Sprint® BlackBerry Introduction Hello to all! My name is Cindi and am a mother to Allie " My little sinus princess " . I also have two other children who are very normal health wise at least. [] Allie is 4 years old. She has always seemed to get sicker more than my other kids but our doctors told us it was normal..some kids just get sick more often...and I believed them and just kept giving her antibiotic after antibiotic. Allie was first hospitalized at 7 weeks with RSV and one week later had her first sinus infection. I asked our doctor about a referral to ENT for two years..she kept saying she did not feel it was necessary yet. Well at 2 and 1/2 Allie was in er again with high fever and was dx with Strep again and ear and sinus infection...at this point I learned to stop believing everything our doctor was telling us. So I made an appt with a ENT on my own...he immediately said we needed to try and take adenoids out and see if that helps with infections. While she went under he discovered she also had GERD which she was aspirating into her sinuses and lungs and she had tracheomalcia. She had a surgery 1 month later to fix the tracheomalcia...which was obstructing her airflow 70% and he thought this and tx for the GERD would decrease the infections. Well 8 sinus surgeries later and picc line for 3 months we finally ended up in our current immunos office. We had seen two other immunos prior to this but they said normal IGGs she is fine and will grow out of the chronic sinusitis. Our current immuno started digging deeper and did more tests....it was discovered she has Mannan Binding Lectin Deficiency and also has low B cells(we are to recheck those in JuLy) The immunologist puts us sheltered from the world(it felt that way at least) and put her on prophylactic abxs. The problem was she was never able to get on the prophylactic abxs more than a week before a new infection had blown up. So in November of this year we started SCIG. Wow what a change....she has her first sinus infection right now since we started the SCIG. Which is so amazing for us! She has been dealing with chronic utis although..(they feel they were there the whole time but were being masked by the constant abxs) She was found to have reflux of both kidneys but only level 1. Well just two weeks ago she had to be admitted to the hospital for iv fluids and abxs for another kidney infection that would not clear up. The urologist felt with all of her health issues best to perform a deflux surgery to save kidneys from any further damage(as of right now right kidney is smaller than left). So last week she had that performed and seems good so far beside the cold we picked up at hospital which is now a wonderful rainbow of colors. We go Friday to see our immunologist who is interested in increasing her SCIG to hopefully knock the utis out of the picture as well. Without the IDF's help I would not have found our current immuno and know right questions to ask. We are slowing getting back to as a normal life as we can have. I am so excited to get to know all of you and about your wonderful children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Welcome, Cindi. It's rare for a doctor to dx MBL defect. Are you at a Children's hospital? OH? There is another mom here whose kids have this. Her son was severe and had bone marrow transplant in OH. She's very busy be maybe she'll chime in. SCIG was a G-d send to us. kids who have established PIDs can not be cured by ENT surgeries. So sorry your daughter had to go through this. They typically need certain antimicrobial drugs/biodrugs or immune reconstitution. Glad she's getting what she needs. best wishes Mom to cvider, 8 Sent on the Now Network™ from my Sprint® BlackBerry Introduction Hello to all! My name is Cindi and am a mother to Allie " My little sinus princess " . I also have two other children who are very normal health wise at least. [] Allie is 4 years old. She has always seemed to get sicker more than my other kids but our doctors told us it was normal..some kids just get sick more often...and I believed them and just kept giving her antibiotic after antibiotic. Allie was first hospitalized at 7 weeks with RSV and one week later had her first sinus infection. I asked our doctor about a referral to ENT for two years..she kept saying she did not feel it was necessary yet. Well at 2 and 1/2 Allie was in er again with high fever and was dx with Strep again and ear and sinus infection...at this point I learned to stop believing everything our doctor was telling us. So I made an appt with a ENT on my own...he immediately said we needed to try and take adenoids out and see if that helps with infections. While she went under he discovered she also had GERD which she was aspirating into her sinuses and lungs and she had tracheomalcia. She had a surgery 1 month later to fix the tracheomalcia...which was obstructing her airflow 70% and he thought this and tx for the GERD would decrease the infections. Well 8 sinus surgeries later and picc line for 3 months we finally ended up in our current immunos office. We had seen two other immunos prior to this but they said normal IGGs she is fine and will grow out of the chronic sinusitis. Our current immuno started digging deeper and did more tests....it was discovered she has Mannan Binding Lectin Deficiency and also has low B cells(we are to recheck those in JuLy) The immunologist puts us sheltered from the world(it felt that way at least) and put her on prophylactic abxs. The problem was she was never able to get on the prophylactic abxs more than a week before a new infection had blown up. So in November of this year we started SCIG. Wow what a change....she has her first sinus infection right now since we started the SCIG. Which is so amazing for us! She has been dealing with chronic utis although..(they feel they were there the whole time but were being masked by the constant abxs) She was found to have reflux of both kidneys but only level 1. Well just two weeks ago she had to be admitted to the hospital for iv fluids and abxs for another kidney infection that would not clear up. The urologist felt with all of her health issues best to perform a deflux surgery to save kidneys from any further damage(as of right now right kidney is smaller than left). So last week she had that performed and seems good so far beside the cold we picked up at hospital which is now a wonderful rainbow of colors. We go Friday to see our immunologist who is interested in increasing her SCIG to hopefully knock the utis out of the picture as well. Without the IDF's help I would not have found our current immuno and know right questions to ask. We are slowing getting back to as a normal life as we can have. I am so excited to get to know all of you and about your wonderful children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 , No we are in South Carolina, our immuno is in ton, prior to that she was at Duke with Dr. Buckley. It is quite aggravating because nobody seems to know much about MBL. All we really have is the ongoing research on it...which some seems so scary. We were started on SCIG for a 6 month trial..and then it has worked so well for us. I have only talked with two other mothers with this deficiency and neither one is on IVIG/SCIG due to their immunologist saying it is not an option???? Our immunologist has told me later down the road a MBL transplant may be a possibility...they just don't know. Do you remember what the other mothers name is so I can look thru all the archives for her messages? It took us two immunologist and one ID doctor until we found a immunologist that could find what was wrong. > > Welcome, Cindi. It's rare for a doctor to dx MBL defect. Are you at a Children's hospital? OH? > > There is another mom here whose kids have this. Her son was severe and had bone marrow transplant in OH. She's very busy be maybe she'll chime in. > > SCIG was a G-d send to us. kids who have established PIDs can not be cured by ENT surgeries. So sorry your daughter had to go through this. They typically need certain antimicrobial drugs/biodrugs or immune reconstitution. Glad she's getting what she needs. > > best wishes > > Mom to cvider, 8 > > Sent on the Now Network™ from my Sprint® BlackBerry > > Introduction > > Hello to all! > My name is Cindi and am a mother to Allie " My little sinus princess " . I > also have two other children who are very normal health wise at least. > [] > > Allie is 4 years old. She has always seemed to get sicker more than my > other kids but our doctors told us it was normal..some kids just get > sick more often...and I believed them and just kept giving her > antibiotic after antibiotic. Allie was first hospitalized at 7 weeks > with RSV and one week later had her first sinus infection. I asked our > doctor about a referral to ENT for two years..she kept saying she did > not feel it was necessary yet. Well at 2 and 1/2 Allie was in er again > with high fever and was dx with Strep again and ear and sinus > infection...at this point I learned to stop believing everything our > doctor was telling us. So I made an appt with a ENT on my own...he > immediately said we needed to try and take adenoids out and see if that > helps with infections. While she went under he discovered she also had > GERD which she was aspirating into her sinuses and lungs and she had > tracheomalcia. She had a surgery 1 month later to fix the > tracheomalcia...which was obstructing her airflow 70% and he thought > this and tx for the GERD would decrease the infections. Well 8 sinus > surgeries later and picc line for 3 months we finally ended up in our > current immunos office. We had seen two other immunos prior to this but > they said normal IGGs she is fine and will grow out of the chronic > sinusitis. Our current immuno started digging deeper and did more > tests....it was discovered she has Mannan Binding Lectin Deficiency and > also has low B cells(we are to recheck those in JuLy) The immunologist > puts us sheltered from the world(it felt that way at least) and put her > on prophylactic abxs. The problem was she was never able to get on the > prophylactic abxs more than a week before a new infection had blown up. > So in November of this year we started SCIG. Wow what a change....she > has her first sinus infection right now since we started the SCIG. Which > is so amazing for us! She has been dealing with chronic utis > although..(they feel they were there the whole time but were being > masked by the constant abxs) She was found to have reflux of both > kidneys but only level 1. Well just two weeks ago she had to be admitted > to the hospital for iv fluids and abxs for another kidney infection that > would not clear up. The urologist felt with all of her health issues > best to perform a deflux surgery to save kidneys from any further > damage(as of right now right kidney is smaller than left). So last week > she had that performed and seems good so far beside the cold we picked > up at hospital which is now a wonderful rainbow of colors. We go Friday > to see our immunologist who is interested in increasing her SCIG to > hopefully knock the utis out of the picture as well. Without the IDF's > help I would not have found our current immuno and know right questions > to ask. We are slowing getting back to as a normal life as we can have. > I am so excited to get to know all of you and about your wonderful > children. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 , No we are in South Carolina, our immuno is in ton, prior to that she was at Duke with Dr. Buckley. It is quite aggravating because nobody seems to know much about MBL. All we really have is the ongoing research on it...which some seems so scary. We were started on SCIG for a 6 month trial..and then it has worked so well for us. I have only talked with two other mothers with this deficiency and neither one is on IVIG/SCIG due to their immunologist saying it is not an option???? Our immunologist has told me later down the road a MBL transplant may be a possibility...they just don't know. Do you remember what the other mothers name is so I can look thru all the archives for her messages? It took us two immunologist and one ID doctor until we found a immunologist that could find what was wrong. > > Welcome, Cindi. It's rare for a doctor to dx MBL defect. Are you at a Children's hospital? OH? > > There is another mom here whose kids have this. Her son was severe and had bone marrow transplant in OH. She's very busy be maybe she'll chime in. > > SCIG was a G-d send to us. kids who have established PIDs can not be cured by ENT surgeries. So sorry your daughter had to go through this. They typically need certain antimicrobial drugs/biodrugs or immune reconstitution. Glad she's getting what she needs. > > best wishes > > Mom to cvider, 8 > > Sent on the Now Network™ from my Sprint® BlackBerry > > Introduction > > Hello to all! > My name is Cindi and am a mother to Allie " My little sinus princess " . I > also have two other children who are very normal health wise at least. > [] > > Allie is 4 years old. She has always seemed to get sicker more than my > other kids but our doctors told us it was normal..some kids just get > sick more often...and I believed them and just kept giving her > antibiotic after antibiotic. Allie was first hospitalized at 7 weeks > with RSV and one week later had her first sinus infection. I asked our > doctor about a referral to ENT for two years..she kept saying she did > not feel it was necessary yet. Well at 2 and 1/2 Allie was in er again > with high fever and was dx with Strep again and ear and sinus > infection...at this point I learned to stop believing everything our > doctor was telling us. So I made an appt with a ENT on my own...he > immediately said we needed to try and take adenoids out and see if that > helps with infections. While she went under he discovered she also had > GERD which she was aspirating into her sinuses and lungs and she had > tracheomalcia. She had a surgery 1 month later to fix the > tracheomalcia...which was obstructing her airflow 70% and he thought > this and tx for the GERD would decrease the infections. Well 8 sinus > surgeries later and picc line for 3 months we finally ended up in our > current immunos office. We had seen two other immunos prior to this but > they said normal IGGs she is fine and will grow out of the chronic > sinusitis. Our current immuno started digging deeper and did more > tests....it was discovered she has Mannan Binding Lectin Deficiency and > also has low B cells(we are to recheck those in JuLy) The immunologist > puts us sheltered from the world(it felt that way at least) and put her > on prophylactic abxs. The problem was she was never able to get on the > prophylactic abxs more than a week before a new infection had blown up. > So in November of this year we started SCIG. Wow what a change....she > has her first sinus infection right now since we started the SCIG. Which > is so amazing for us! She has been dealing with chronic utis > although..(they feel they were there the whole time but were being > masked by the constant abxs) She was found to have reflux of both > kidneys but only level 1. Well just two weeks ago she had to be admitted > to the hospital for iv fluids and abxs for another kidney infection that > would not clear up. The urologist felt with all of her health issues > best to perform a deflux surgery to save kidneys from any further > damage(as of right now right kidney is smaller than left). So last week > she had that performed and seems good so far beside the cold we picked > up at hospital which is now a wonderful rainbow of colors. We go Friday > to see our immunologist who is interested in increasing her SCIG to > hopefully knock the utis out of the picture as well. Without the IDF's > help I would not have found our current immuno and know right questions > to ask. We are slowing getting back to as a normal life as we can have. > I am so excited to get to know all of you and about your wonderful > children. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 Welcome Sue! There does seem to be a lot of overlap in triggers for both autism and CFS if you Google them. And yes the reluctance of the medical establishment to consider either as symptoms of a wider toxin/allergy issue is beyond frustrating! Hope you find some useful info here, I always have Steph > > Hi > > I've just joined this group and wanted to introduce myself. I have two children with chronic health issues. My daughter (15) has recently been found to have had glandular fever, following years of ME/CFS symptoms, and my son (11) received a diagnosis of autism a year ago. > > Having children with not one, but two politically controversial medical conditions, which took years to diagnose, I have become very interested in the diagnostic process itself. The biggest obstacle to further progress to finding the causes of complex symptoms, in my view, is the widespread assumption that similar symptoms must indicate the same causes; that all people with CFS symptoms must have the same condition (CFS), and all people with autistic symptoms must have the same condition (autism). > > My daughter has responded very well to a dairy-free diet, and my son to switching to goats' milk, so I am looking forward to reading about other parents' experiences with dietary interventions. > > I am also interested in sensory factors in autism. > > Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 Welcome Sue! There does seem to be a lot of overlap in triggers for both autism and CFS if you Google them. And yes the reluctance of the medical establishment to consider either as symptoms of a wider toxin/allergy issue is beyond frustrating! Hope you find some useful info here, I always have Steph > > Hi > > I've just joined this group and wanted to introduce myself. I have two children with chronic health issues. My daughter (15) has recently been found to have had glandular fever, following years of ME/CFS symptoms, and my son (11) received a diagnosis of autism a year ago. > > Having children with not one, but two politically controversial medical conditions, which took years to diagnose, I have become very interested in the diagnostic process itself. The biggest obstacle to further progress to finding the causes of complex symptoms, in my view, is the widespread assumption that similar symptoms must indicate the same causes; that all people with CFS symptoms must have the same condition (CFS), and all people with autistic symptoms must have the same condition (autism). > > My daughter has responded very well to a dairy-free diet, and my son to switching to goats' milk, so I am looking forward to reading about other parents' experiences with dietary interventions. > > I am also interested in sensory factors in autism. > > Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 Hi Sue, There are various diets in place on this forum! My son's on GAPS (a version of SCD) which is well worth a look at imho and has made a big difference for my son along with other therapies. You can read 'gut and psychology syndrome' if you're interested by Natasha McBride, Sara Sue wrote: > > Hi > > I've just joined this group and wanted to introduce myself. I have two > children with chronic health issues. My daughter (15) has recently > been found to have had glandular fever, following years of ME/CFS > symptoms, and my son (11) received a diagnosis of autism a year ago. > > Having children with not one, but two politically controversial > medical conditions, which took years to diagnose, I have become very > interested in the diagnostic process itself. The biggest obstacle to > further progress to finding the causes of complex symptoms, in my > view, is the widespread assumption that similar symptoms must indicate > the same causes; that all people with CFS symptoms must have the same > condition (CFS), and all people with autistic symptoms must have the > same condition (autism). > > My daughter has responded very well to a dairy-free diet, and my son > to switching to goats' milk, so I am looking forward to reading about > other parents' experiences with dietary interventions. > > I am also interested in sensory factors in autism. > > Sue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 Hi Sue, There are various diets in place on this forum! My son's on GAPS (a version of SCD) which is well worth a look at imho and has made a big difference for my son along with other therapies. You can read 'gut and psychology syndrome' if you're interested by Natasha McBride, Sara Sue wrote: > > Hi > > I've just joined this group and wanted to introduce myself. I have two > children with chronic health issues. My daughter (15) has recently > been found to have had glandular fever, following years of ME/CFS > symptoms, and my son (11) received a diagnosis of autism a year ago. > > Having children with not one, but two politically controversial > medical conditions, which took years to diagnose, I have become very > interested in the diagnostic process itself. The biggest obstacle to > further progress to finding the causes of complex symptoms, in my > view, is the widespread assumption that similar symptoms must indicate > the same causes; that all people with CFS symptoms must have the same > condition (CFS), and all people with autistic symptoms must have the > same condition (autism). > > My daughter has responded very well to a dairy-free diet, and my son > to switching to goats' milk, so I am looking forward to reading about > other parents' experiences with dietary interventions. > > I am also interested in sensory factors in autism. > > Sue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 On 6 February 2010 09:55, <mark.grabiec@...> wrote: > > Welcome Sue! Â There does seem to be a lot of overlap in triggers for both autism and CFS if you Google them. And yes the reluctance of the medical establishment to consider either as symptoms of a wider toxin/allergy issue is beyond frustrating! > > Hope you find some useful info here, I always have Welcome, colorimeter specs prevented the fatigue part of my ME from coming back. Chelation meant i could do without my specs permanently. -- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 On 6 February 2010 09:55, <mark.grabiec@...> wrote: > > Welcome Sue! Â There does seem to be a lot of overlap in triggers for both autism and CFS if you Google them. And yes the reluctance of the medical establishment to consider either as symptoms of a wider toxin/allergy issue is beyond frustrating! > > Hope you find some useful info here, I always have Welcome, colorimeter specs prevented the fatigue part of my ME from coming back. Chelation meant i could do without my specs permanently. -- is Quote Link to comment Share on other sites More sharing options...
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