Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Welcome Sheila, The people on this list are very kind and supportive. My granddaughter Shelby was diagnosed in February at 3 months old. I remember how completely lost and frightened I was. This list (and others) certainly helps so keep reading. Margaret. New to List > Hello, > > I wanted to introduce myself to everybody. I am the mother of two beautiful > girls, ages 4, and 16 months. My 4 year old was just diagnosed with CF last > week. She has suffered from a prolapsed rectum for over two years and has > had problems with her digestive system since birth. My 16 month old has not > been tested yet, but I doubt she will test positive. We were relieved to > finally have an answer as to what was wrong with Makenzie, but we were > devastated to find out it was CF. My brain feels like mush from all the > information I have been absorbing. I hope to learn a lot through all of > you. I have a lot of questions that I am sure some of you can help me > with. I won't dump them all on you at once. I know that my doctor said > they are so close to a cure, but how close is close? And, what is the > average age these days that people with CF are living to? I hope to hear > from you all soon. Thanks. > > Sheila Goff > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hello Hillary, My name is Simone Price and just found out my 2 and a half year old daughter has RSS (although the doctor still isn't quite sure). She is very small for her age and has the typical little fingers, bad eater, is not walking yet and talking is difficult. I know you were asking others for support but if you don't mind I would love to hear your challenges and experiences. We don't know much about RSS. Its difficult to get info here in Holland, where we live so any information is welcome. The doctor told us to wait with speach lessons until she is three and we should give her some time to develop in her own time. Also do you have experience with Growth Hormone? Thanks, Simone -----Oorspronkelijk bericht----- Van: Hillary nsen Verzonden: vrijdag 10 augustus 2001 4:04 Aan: RSS-Support Onderwerp: New to list Hi. I'm new to the list and just thought that I would take a minute to introduce myself. I'm a 19 year old female with RSS and I joined the list in search of finding others like me. I've read the posts for the last few days and it seems that most of the list is parents w/ RSS children, but it feels good just to know that I have a place to go where others are like me and facing some of the same challenges. Best Wishes, Hillary _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Hi Simone, I thought I would send quick answers to your questions from my perspective... I am 24 years old and was diagnosed with RSS at 13 months (a geneticist confirmed this dx last November). I too was very small, have the little finger thing and was a late walker (probably partly due to hip dysplasia(sp?) too). I never ate a lot, but would eat throughout the day. I don't think I had any speech delays, though (never had ST, anyway, and I'm okay now)... and Growth Hormone wasn't a well-known option at that time, so I didn't use it. I'm now 4'8 " (almost) and about 80lbs. Still tiny. But for the most part, it hasn't had a huge impact on my life. Definitely the three most annoying things about it are: clothes, driving and the strangers that stare. But those really are such unimportant things, I'm really very lucky. I'm currently working on my PhD in neuroscience and think I'm a fairly well adjusted person (although there are some days I think I was crazy to come to grad school, but that's another story!). just trying to say that I think a lot of the RSS issues get easier as kids get older. Medically, I don't have any problems related to RSS (although, I have to admit, I don't think I did as a child either)... I don't know if that helps or not... just my experiences... -Ana > Hello Hillary, My name is Simone Price and just found out my 2 and a half > year old daughter has RSS (although the doctor still isn't quite sure). She > is very small for her age and has the typical little fingers, bad eater, is > not walking yet and talking is difficult. I know you were asking others for > support but if you don't mind I would love to hear your challenges and > experiences. We don't know much about RSS. Its difficult to get info here in > Holland, where we live so any information is welcome. > The doctor told us to wait with speach lessons until she is three and we > should give her some time to develop in her own time. Also do you have > experience with Growth Hormone? > Thanks, Simone > > -----Oorspronkelijk bericht----- > Van: Hillary nsen [mailto:grace_08@h...] > Verzonden: vrijdag 10 augustus 2001 4:04 > Aan: RSS-Support@y... > Onderwerp: New to list > > > Hi. I'm new to the list and just thought that I would take a minute to > introduce myself. I'm a 19 year old female with RSS and I joined the list > in search of finding others like me. I've read the posts for the last few > days and it seems that most of the list is parents w/ RSS children, but it > feels good just to know that I have a place to go where others are like me > and facing some of the same challenges. > Best Wishes, > Hillary > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Hi Simone, I thought I would send quick answers to your questions from my perspective... I am 24 years old and was diagnosed with RSS at 13 months (a geneticist confirmed this dx last November). I too was very small, have the little finger thing and was a late walker (probably partly due to hip dysplasia(sp?) too). I never ate a lot, but would eat throughout the day. I don't think I had any speech delays, though (never had ST, anyway, and I'm okay now)... and Growth Hormone wasn't a well-known option at that time, so I didn't use it. I'm now 4'8 " (almost) and about 80lbs. Still tiny. But for the most part, it hasn't had a huge impact on my life. Definitely the three most annoying things about it are: clothes, driving and the strangers that stare. But those really are such unimportant things, I'm really very lucky. I'm currently working on my PhD in neuroscience and think I'm a fairly well adjusted person (although there are some days I think I was crazy to come to grad school, but that's another story!). just trying to say that I think a lot of the RSS issues get easier as kids get older. Medically, I don't have any problems related to RSS (although, I have to admit, I don't think I did as a child either)... I don't know if that helps or not... just my experiences... -Ana > Hello Hillary, My name is Simone Price and just found out my 2 and a half > year old daughter has RSS (although the doctor still isn't quite sure). She > is very small for her age and has the typical little fingers, bad eater, is > not walking yet and talking is difficult. I know you were asking others for > support but if you don't mind I would love to hear your challenges and > experiences. We don't know much about RSS. Its difficult to get info here in > Holland, where we live so any information is welcome. > The doctor told us to wait with speach lessons until she is three and we > should give her some time to develop in her own time. Also do you have > experience with Growth Hormone? > Thanks, Simone > > -----Oorspronkelijk bericht----- > Van: Hillary nsen [mailto:grace_08@h...] > Verzonden: vrijdag 10 augustus 2001 4:04 > Aan: RSS-Support@y... > Onderwerp: New to list > > > Hi. I'm new to the list and just thought that I would take a minute to > introduce myself. I'm a 19 year old female with RSS and I joined the list > in search of finding others like me. I've read the posts for the last few > days and it seems that most of the list is parents w/ RSS children, but it > feels good just to know that I have a place to go where others are like me > and facing some of the same challenges. > Best Wishes, > Hillary > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 Hello to all! I'm new to the group and I wanted to introduce myself. I had surgery in July, 1999 at Pitt Memorial Hospital in Greenville, NC. (Dr. Cunningham) My pre-op weight was 261 and I am 5'2 " tall. I reached a low weight of 127 in August of 2000 and now I am at 146. Needless to say, I am not happy with the weight gain. I am interested in the discussion on iron levels. I just caught some of the discussion about the differnces in iron supplements. I am extremely anemic now and my regular doctor has prescribed 325 mg of ferrous sulfate 3 times a day to try to get my levels up. He said my iron was a 9. Could anyone be so kind as to enlighten me on the iron issues. Also, I am very interested in the protein issues. My doc has never said anything about the importance of getting in the protein. My regular doctor (an internist) doesn't know a thing about gastric bybass and therefore hasn't been much help to me. Dr. Cunningham doesn't seem too interested either, unless the question relates directly to the actual surgery. (incision, etc) I have really enjoyed reading all the posts from everyone. We all need the support we can get from one another. I'm so glad I found this forum!! Thanks again for listening!! Judy in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 Judy, Welcome to the group! I am also taking the Iron 3x a day, but find it difficult to get all three in, plus the 3 doses of Calcium I'm supposed to take. I also forgot at least one dose, and it frustrates me to no end. Can I ask if your weight is stable now? The fear and/or reality of re-gain is scary, and I'm just curious if you are now able to maintain your weight, or find it a struggle. I am just a little bit behind you, and am struggling to stop the regain - I'm up 5 pounds this month, for the first time. It would be a great help if you could share what you've been through. Helene RNY 12/22/99 350 then/158 now bujwater@... wrote: > Hello to all! I'm new to the group and I wanted to introduce > myself. I had surgery in July, 1999 at Pitt Memorial Hospital > in Greenville, NC. (Dr. Cunningham) My pre-op weight was > 261 and I am 5'2 " tall. I reached a low weight of 127 in August > of 2000 and now I am at 146. Needless to say, I am not happy > with the weight gain. I am interested in the discussion on iron > levels. I just caught some of the discussion about the differnces > in iron supplements. I am extremely anemic now and my regular > doctor has prescribed 325 mg of ferrous sulfate 3 times a day to try > to get my levels up. He said my iron was a 9. Could anyone be so > kind as to enlighten me on the iron issues. Also, I am very > interested in the protein issues. My doc has never said anything > about the importance of getting in the protein. > > My regular doctor (an internist) doesn't know a thing about gastric > bybass and therefore hasn't been much help to me. Dr. Cunningham > doesn't seem too interested either, unless the question relates > directly to the actual surgery. (incision, etc) I have really > enjoyed reading all the posts from everyone. We all need the support > we can get from one another. I'm so glad I found this forum!! > Thanks again for listening!! > Judy in NC > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Judy, Thanks so much for writing. I am going through similar things. I have been loosing, and everyone was telling me I was too thin (even though at 5'5 " I was down to 150 - not thin for a " normal " person!). But I went from losing to gaining. I feel as if I can eat a huge volume. The protein is very important. We should be eating about 75 gms each day. From experience, I know that if I concentrate on eating protein, then veggies and fruit, with very little carbs and almost no sugar, the hunger is lessened and weight lose is increased. I eat so many more types of protein than I ever though - I add tofu to everything I cook, or throw in shrimp, scallops, even calamari rings (great protein, no fat). Beans, legumes, turkey sausage (they make fabulous flavored sausage that I cut up and add to many dishes, or eat like a hot dog for lunch at work). Of course, I was eating protein bars, but now have to watch because I started regarding them as candy bars, and one day ate three of them. It's better to get the protein from real food. I would suggest you try a higher than usual protein routine for a few days, and see if it helps. Keep in touch - we can help each other! Helene Judy Waters wrote: > Helene, I started gaining sometime after September of last year. The funny > thing is that before that I couldn't stop losing. I was actually getting afraid > that the weight loss would not stop. 127 was too small for me. I looked bad! > So when I gained a little bit I looked better and everyone noticed that. I had > a spell with enlarged lympth nodes back in the late winter. Docs couldn't > determine what the cause. I had a large lympth node removed from under my arm > and thank God it was not cancer. My lympth nodes are all still enlarged!! No > one seems to be able to figure it out. I am not sick but am anemic and tired. > The weight gain has been continuous, slow and steady. My general doctor (an > internist) asks how I feel and comments you gained a few pounds, thats good!! > Well, I don't eat enough to have gained this weight. I've said it a hundred > times!! > My thyroid is within normal range, but low. I don't exercise like I should, but > then again I never did even in the beginning. I guess I'm going to have to diet > or something. I want to know more about the protein thing. How can it help. > I'd love to continue to share our journey together. Talk to you soon. > > Judy > > hwd112 wrote: > > > Judy, > > Welcome to the group! I am also taking the Iron 3x a day, but find it > > difficult to get all three in, plus the 3 doses of Calcium I'm supposed to > > take. I also forgot at least one dose, and it frustrates me to no end. Can > > I ask if your weight is stable now? The fear and/or reality of re-gain is > > scary, and I'm just curious if you are now able to maintain your weight, or > > find it a struggle. I am just a little bit behind you, and am struggling to > > stop the regain - I'm up 5 pounds this month, for the first time. It would > > be a great help if you could share what you've been through. > > > > Helene > > RNY 12/22/99 > > 350 then/158 now > > > > bujwater@... wrote: > > > > > Hello to all! I'm new to the group and I wanted to introduce > > > myself. I had surgery in July, 1999 at Pitt Memorial Hospital > > > in Greenville, NC. (Dr. Cunningham) My pre-op weight was > > > 261 and I am 5'2 " tall. I reached a low weight of 127 in August > > > of 2000 and now I am at 146. Needless to say, I am not happy > > > with the weight gain. I am interested in the discussion on iron > > > levels. I just caught some of the discussion about the differnces > > > in iron supplements. I am extremely anemic now and my regular > > > doctor has prescribed 325 mg of ferrous sulfate 3 times a day to try > > > to get my levels up. He said my iron was a 9. Could anyone be so > > > kind as to enlighten me on the iron issues. Also, I am very > > > interested in the protein issues. My doc has never said anything > > > about the importance of getting in the protein. > > > > > > My regular doctor (an internist) doesn't know a thing about gastric > > > bybass and therefore hasn't been much help to me. Dr. Cunningham > > > doesn't seem too interested either, unless the question relates > > > directly to the actual surgery. (incision, etc) I have really > > > enjoyed reading all the posts from everyone. We all need the support > > > we can get from one another. I'm so glad I found this forum!! > > > Thanks again for listening!! > > > Judy in NC > > > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > > > > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Judy, maybe you should have the thyroid tested again. I tested normal for thyroid for several years, even though I was gaining like crazy (pre-WLS). When I went for preop for VBG, found my thryoid was enlarged, partially blocking airway and I had to have thryoidectomy before surgeon would proceed with the VBG. If your thyroid level is low, I would retest. judy in austin --- hwd112 wrote: > Judy, > Thanks so much for writing. I am going through > similar things. I have been > loosing, and everyone was telling me I was too thin > (even though at 5'5 " I was down > to 150 - not thin for a " normal " person!). But I > went from losing to gaining. I > feel as if I can eat a huge volume. > > The protein is very important. We should be eating > about 75 gms each day. From > experience, I know that if I concentrate on eating > protein, then veggies and fruit, > with very little carbs and almost no sugar, the > hunger is lessened and weight lose > is increased. I eat so many more types of protein > than I ever though - I add tofu > to everything I cook, or throw in shrimp, scallops, > even calamari rings (great > protein, no fat). Beans, legumes, turkey sausage > (they make fabulous flavored > sausage that I cut up and add to many dishes, or eat > like a hot dog for lunch at > work). Of course, I was eating protein bars, but > now have to watch because I > started regarding them as candy bars, and one day > ate three of them. It's better to > get the protein from real food. I would suggest you > try a higher than usual protein > routine for a few days, and see if it helps. Keep > in touch - we can help each > other! > > Helene > > Judy Waters wrote: > > > Helene, I started gaining sometime after > September of last year. The funny > > thing is that before that I couldn't stop losing. > I was actually getting afraid > > that the weight loss would not stop. 127 was too > small for me. I looked bad! > > So when I gained a little bit I looked better and > everyone noticed that. I had > > a spell with enlarged lympth nodes back in the > late winter. Docs couldn't > > determine what the cause. I had a large lympth > node removed from under my arm > > and thank God it was not cancer. My lympth nodes > are all still enlarged!! No > > one seems to be able to figure it out. I am not > sick but am anemic and tired. > > The weight gain has been continuous, slow and > steady. My general doctor (an > > internist) asks how I feel and comments you gained > a few pounds, thats good!! > > Well, I don't eat enough to have gained this > weight. I've said it a hundred > > times!! > > My thyroid is within normal range, but low. I > don't exercise like I should, but > > then again I never did even in the beginning. I > guess I'm going to have to diet > > or something. I want to know more about the > protein thing. How can it help. > > I'd love to continue to share our journey > together. Talk to you soon. > > > > Judy > > > > hwd112 wrote: > > > > > Judy, > > > Welcome to the group! I am also taking the Iron > 3x a day, but find it > > > difficult to get all three in, plus the 3 doses > of Calcium I'm supposed to > > > take. I also forgot at least one dose, and it > frustrates me to no end. Can > > > I ask if your weight is stable now? The fear > and/or reality of re-gain is > > > scary, and I'm just curious if you are now able > to maintain your weight, or > > > find it a struggle. I am just a little bit > behind you, and am struggling to > > > stop the regain - I'm up 5 pounds this month, > for the first time. It would > > > be a great help if you could share what you've > been through. > > > > > > Helene > > > RNY 12/22/99 > > > 350 then/158 now > > > > > > bujwater@... wrote: > > > > > > > Hello to all! I'm new to the group and I > wanted to introduce > > > > myself. I had surgery in July, 1999 at Pitt > Memorial Hospital > > > > in Greenville, NC. (Dr. Cunningham) My > pre-op weight was > > > > 261 and I am 5'2 " tall. I reached a low > weight of 127 in August > > > > of 2000 and now I am at 146. Needless to say, > I am not happy > > > > with the weight gain. I am interested in the > discussion on iron > > > > levels. I just caught some of the discussion > about the differnces > > > > in iron supplements. I am extremely anemic > now and my regular > > > > doctor has prescribed 325 mg of ferrous > sulfate 3 times a day to try > > > > to get my levels up. He said my iron was a 9. > Could anyone be so > > > > kind as to enlighten me on the iron issues. > Also, I am very > > > > interested in the protein issues. My doc has > never said anything > > > > about the importance of getting in the > protein. > > > > > > > > My regular doctor (an internist) doesn't know > a thing about gastric > > > > bybass and therefore hasn't been much help to > me. Dr. Cunningham > > > > doesn't seem too interested either, unless the > question relates > > > > directly to the actual surgery. (incision, > etc) I have really > > > > enjoyed reading all the posts from everyone. > We all need the support > > > > we can get from one another. I'm so glad I > found this forum!! > > > > Thanks again for listening!! > > > > Judy in NC > > > > > > > > Homepage: > http://groups.yahoo.com/group/Graduate-OSSG > > > > > > > > Unsubscribe: > mailto:Graduate-OSSG-unsubscribe > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 , If your kids want to talk to other kids and adults with RSS there is a group especially for them called rss people. They could join the same way you joined this group. I know of a 13 year old boy and a 12 year old girl (both with RSS) that are on this group. It would probably be great for your kids! Carmen, Mom to Paisley, age 9 (NON-RSS) and Storm, age 6 (RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 , I would hate to think that anyone on this list would judge you for not using drugs on your children. You have made the decision that you and your children felt were right for them. That is the most important thing of all. The most difficult part of this RSS thing for those of us with older RSS children is making these decisions of whether or not to use gh, or puberty-delaying drugs, or whatever. The decision that is made is a very personal one and no one has the right to dispute that. That being said, I'm glad you are back with us and hope that we can all learn from each other. I'm the mom of a 13.5 year old son who is just about 4'9 " now. Each and every fraction of an inch has been a battle. We did go the medication route, but that was what was right for us. And every day I pray that we made the right decision. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 , I would hate to think that anyone on this list would judge you for not using drugs on your children. You have made the decision that you and your children felt were right for them. That is the most important thing of all. The most difficult part of this RSS thing for those of us with older RSS children is making these decisions of whether or not to use gh, or puberty-delaying drugs, or whatever. The decision that is made is a very personal one and no one has the right to dispute that. That being said, I'm glad you are back with us and hope that we can all learn from each other. I'm the mom of a 13.5 year old son who is just about 4'9 " now. Each and every fraction of an inch has been a battle. We did go the medication route, but that was what was right for us. And every day I pray that we made the right decision. Jodi Quote Link to comment Share on other sites More sharing options...
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