Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 Ive been a member since my son was diagnosed with Autism ladt year but have not participated since his docs said that there was no need for dietary changes but now we have our neurologist telling us to try the GFCF diet which I should have done a year ago when I first had the info but silly me believed the docs, but anyway here I am and I have no clue where to start, my son is the typical picky almost three year old eater and his fave foods are, peanut butter toast, sweet potato pancakes, eggo waffles, chicken nuggets and pretty much everything i can think of with casein and gluten in it, so now that we have to cut that out I have no clue where to start, also we just moved to South Mississippi and there is not much in the way of health food stores that ive seen which is gonna make this much harder, any help from you guys would be much appreciated. Tania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 > > Ive been a member since my son was diagnosed with Autism ladt year but > have not participated since his docs said that there was no need for > dietary changes but now we have our neurologist telling us to try the > GFCF diet which I should have done a year ago when I first had the > info but silly me believed the docs, but anyway here I am and I have > no clue where to start, my son is the typical picky almost three year > old eater and his fave foods are, peanut butter toast, sweet potato > pancakes, eggo waffles, chicken nuggets and pretty much everything i > can think of with casein and gluten in it, so now that we have to cut > that out I have no clue where to start, also we just moved to South > Mississippi and there is not much in the way of health food stores > that ive seen which is gonna make this much harder, any help from you > guys would be much appreciated. > Tania > Welcome Tania, Please read our website: http://www.pecanbread.com/ You can do SCD with regular grocery stores. How about having a look as many of your questionscan be answered on the above link. Carol F. SCD 7 years, celiac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 i live in langhorne, PA, about half an hour from Princeton last summer i met Teddyspenguins aka marianne at the Quakerbridge Mall for lunch i don't know where Robbinsville NJ is lives in Blue Bell PA Adrienne lives in Germantown PA we scheduled a lunch date for this coming saturday you are welcome to join us we could change the location to accomadate you if necessary and I go to Penn Adrienne goes to Temple My pulmonary doc is at Penn and I was evaluated at Penn for transplant and am a candidate there last year I listed, but they changed the meds, my disease was responsive to the meds so they put me on the inactive list I went to rehab at St Med Center in Langhorne still go there for maintenance We used to change the concentrator settings, but it is easier to leave it in one place most of the time it's wonderful that you are still able to work from the way you are writing it sounds like you already have an oximeter if not, someone else on the site will give you a link for buying one i purchased a nonin 9500 a couple of years ago, this past year i purchased a nonin GO we usually recommend consulting with a pulmonary at a teaching hospital that has a dept specializing in ILD's, but you are already in the process of doing so welcome, glad you found us, sorry you need us Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Hello EveryoneTo: Breathe-Support Date: Monday, January 18, 2010, 11:22 AM Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting. My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once I go upstairs I don't go back down to change the setting. 06 IPF/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 Pink, I can't make it to lunch this weekend. Thanks for the willingness to change locations. Quakerbridge Mall is not far from my house. Hopefully, some other time we can meet. Yes, I have a oximeter. Glad to hear you have been responsive to the medications. I let you know how it goes at Temple. 06 IPF 2/05 To: Breathe-Support Sent: Mon, January 18, 2010 12:29:06 PMSubject: Re: Hello Everyone i live in langhorne, PA, about half an hour from Princeton last summer i met Teddyspenguins aka marianne at the Quakerbridge Mall for lunch i don't know where Robbinsville NJ is lives in Blue Bell PA Adrienne lives in Germantown PA we scheduled a lunch date for this coming saturday you are welcome to join us we could change the location to accomadate you if necessary and I go to Penn Adrienne goes to Temple My pulmonary doc is at Penn and I was evaluated at Penn for transplant and am a candidate there last year I listed, but they changed the meds, my disease was responsive to the meds so they put me on the inactive list I went to rehab at St Med Center in Langhorne still go there for maintenance We used to change the concentrator settings, but it is easier to leave it in one place most of the time it's wonderful that you are still able to work from the way you are writing it sounds like you already have an oximeter if not, someone else on the site will give you a link for buying one i purchased a nonin 9500 a couple of years ago, this past year i purchased a nonin GO we usually recommend consulting with a pulmonary at a teaching hospital that has a dept specializing in ILD's, but you are already in the process of doing so welcome, glad you found us, sorry you need us Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: <karenmary06@ yahoo.com>Subject: Hello EveryoneTo: Breathe-Support@ yahoogroups. comDate: Monday, January 18, 2010, 11:22 AM Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting. My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once I go upstairs I don't go back down to change the setting. 06 IPF/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 Thanks Adrienne, I'll let you know how it goes at Temple. Hopefully, I will be able to meet you soon. To: Breathe-Support Sent: Mon, January 18, 2010 2:23:08 PMSubject: Re: Hello Everyone Hi , Welcome to the site. Sorry you had to find it but I think you will find it very helpful. I read that you are going to Temple for an evaluation. That is where my pulmonary doctor is. He really wants me to lose weight so he can get me started on the road to a lung transplant. I have been trying and I have an appointment this week. I guess I'll find out soon what to do. I hope you can join us at some point for lunch. It is nice to put a face to the name. Take care and good luck at the doctors. Adrienne From: <karenmary06@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 18, 2010 11:22:25 AMSubject: Hello Everyone Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting. My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once I go upstairs I don't go back down to change the setting. 06 IPF/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 , Welcome to a world of great information and interesting members. Glad you found us and hope that you will be helped whenever needed. Bettye Kline 70/MS dx 06/09 To: Breathe-Support Sent: Mon, January 18, 2010 10:22:25 AMSubject: Hello Everyone Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting. My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once I go upstairs I don't go back down to change the setting. 06 IPF/05 Quote Link to comment Share on other sites More sharing options...
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