Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Hi Gwen! My name is Christy Temple and I'm beginning the process also!!! I'm trying to get my ten contacts as well. I really hope we can correspond and support each other through this exciting, yet nervous preparation. I'm a 37 yr old white female and I weigh 300pds. I submitted my consideration form early yesterday(Sat.) morning around 1am and was so happy that I received my insurance letter back from Dr. R within 24hrs. I can hardly wait to meet this " angel here on earth " . Please let me know how things are going with you...........who knows we may end up having our surgery on the same day.... I look forward to hearing from you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Hi gwen, Welcome to the group, Hang on to your hat, you are about to learn everything you always wanted to know but were afraid to ask about WLS. Go to the website to get your contacts, or watch this egroup, many people offer over the course of a couple of weeks. But they must be post-ops and many of us here are pre-ops. Jillian Bopeep Jil 342 BMI 54 MGB 11-15-00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Flo, Thank you for the warm welcome. I am glad to be here. Thanks also for the contact offer. Im looking foward to the the day when I can be a post-op contact for others! Gwen In a message dated 10/29/2000 6:59:17 AM Eastern Standard Time, florence@... writes: << Hi Gwen: I'm always glad to be a contact. Almost any post-op on this list will also be happy to be a contact. Please write to us personally and ask us any questions you may have. Welcome aboard! I hope your experience is as positive as mine has been. You mention you are a black woman. You may want to contact le (not sure she's on this list). She was attempting to compile a list of black women so they can discuss things specific to them with the surgery. You can reach le at CUTEAKA2NV@... If that address doesn't work, please let me know as I am in daily contact with le. Again...welcome. You'll like it here! Flo in land >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Hi Genz, Thank you! I will definately be in contact. Wishing you continured success! Gwen in Durham In a message dated 10/29/2000 8:57:51 AM Eastern Standard Time, smootgen@... writes: << Hi Gwen, Feel free to contact me privately by e-mail or call me at 817 577-0919. Good luck on your journey. Best Wishes, Genz ( Genzel from Fort Worth, Texas) MGB 5-31-00 249/193 >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Hi Gwen, Feel free to contact me privately by e-mail or call me at 817 577-0919. Good luck on your journey. Best Wishes, Genz ( Genzel from Fort Worth, Texas) MGB 5-31-00 249/193 ncbrnsugah@... wrote: > Hi Everyone, > I want to introduce myself to the group. My name is Gwen Sherrod and right > now I am preparing to have the MGB surgery. I am a 32 year black female from > Durham, NC. Im 5'10 and 325lbs. I am just beginning the process of > collecting information and getting my letters together. I need to contact > 10 people. I want to know if any of you would be willing to chat with me > about your experiences. > > Looking forward to the new me, > Gwen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Welcome.. The best way to get your contacts is write each on a little email and ask some questions.. What I did was wrote 3 letters asking different things, then I sent each letter went to 4 people at a time.. So I have 12 contacts.. actually more b/c I would talk with others and use that too. When you get the contacts reply, print it and put it in your file that you have started.. Then once you get them all, write a letter summing up what they told you.. Enclose the letters.. Oh, in your letter include their name and date you contacted them.. So, when you request contact make sure to ask for their full name ... To find your contacts go to .... MGB page and scroll down left side to- " contact patients'.. ... Everyone that I chose was out of state, b/c I am from Ga.. So I wanted to know about traveling. Just a little help, I hope in Ga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 Hi Christy!! Im sorry to take so long to respond. My process is going smoothly. Yesterday I got notice that my insurance company apporived my surgery. You know I am elated. I am trying to finalize a few things so I can submit my package by the end of the week. I went to clinic on Tuesday and met alot of other hopefuls.. I also got to see , Rikayya, Jenn and Glo Dean I can wait to dance! (I thinking im preparing a ballet for my dance) Gwen Durham, NC In a message dated 10/29/2000 9:29:47 PM Eastern Standard Time, JCLifesaver@... writes: << Hi Gwen! My name is Christy Temple and I'm beginning the process also!!! I'm trying to get my ten contacts as well. I really hope we can correspond and support each other through this exciting, yet nervous preparation. I'm a 37 yr old white female and I weigh 300pds. I submitted my consideration form early yesterday(Sat.) morning around 1am and was so happy that I received my insurance letter back from Dr. R within 24hrs. I can hardly wait to meet this " angel here on earth " . Please let me know how things are going with you...........who knows we may end up having our surgery on the same day.... I look forward to hearing from you. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Kathleen, CONGRATULATIONS on !!! Bet you are one proud grandma.!! Can't wait to hold him can you??? LOL It's so good to hear from you. I hope you are taking it east while packing and getting moved. What a job that is. I am watching really close with the tapering of the pred. In fact I reread the book " Coping with Prednisone " last night and now realize why I'm so tired. DUH...!!! Yes, I'm a fast learner. LOL I'm still trying to find a quilt teacher. LOL When you are all settled in let us know and those of us who have quilt squares will send them. I think I need to get out my super glue. LOL Thinking of you always. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 katwench@... wrote: Hi All,Just trying to send a "catch up" note.Heidi - Thanks for all the information on Pete ... Janet and her family are in my thoughts and prayers and I will get a card in the mail today. Additionally, glad to hear that Don is on the mend again and driving you nuts and yes, that would be peanuts!) - Happy belated Anniversary. From your post it appears you had a lovely time. Keep us posted on that date for surgery ... and take it easy with that prednisone reduction. I hope you don't flare at such a rapid reduction rate. I'll keep my fingers and toes crossed for you.Glenda - Please know your sister and your family are in my thoughts and prayers too. I hope the doctors come up with a positive solution for her. Liz - It's always a pleasure reading about your adventures. I look forward to hopefully seeing you in sunny CA this summer. I'm sure the weather there will be mild compared to what you've just returned from.To all those who have had birthdays recently, Marilyn, et all, ... Happy Happy to each and everyone of you.To the rest of the group who are flaring and feeling overall "poopy" to put it mildly, take those meds, drink plenty of water to flush them through your system and take those vitamins. Lastly, just want to let you all know, we are winding down to the end of our adventures on the East Coast ending 6 years of new territory we have explored when the time permitted. We leave for California on June 21st, dog, and cat in tow on the plane. But the best news of all .... our son and his wife blessed us with another grandchild on my parents anniversary on the 29th ... Colin weighed in at 7 lbs 14 oz and was 19-1/2 inches long and a clone of his father. Be well and I pray we all enjoy some long-term remission with this wonderful disease we share. It gives us something to hope for .... don't forget to exercise when time and pain permits. Just me, Kathleen (NY)DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Sherry, thanks so much for the update on Shirley and her husband. Sounds like they are both on the right track. Sounds like you need to get some rest. I will be checking in soon to see how you all are. Give Shirley my best and a big hug. love ya all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2005 Report Share Posted May 29, 2005 Hi, I joined this group a few weeks ago and was going to read the posts before posting to the group. I decided to go ahead and post since there are so many post. I am trying to learn about RSS because altough my child has not been tested for this, she shows many of the signs of RSS. Hailey is 3 years old and weighs 20 lbs. She was born 12 weeks early and weighed 1 lb 12 and 1/2 ozs. She was small for her gestational age and grew very slowly while in the NICU. She stayed in the NICU for 68 days until she reached her " going home " weight of 4 lbs. While in the NICU they tested her for everything they could think of (not RSS, but everything else that could go wrong). They even tested my breastmilk to make sure it had enough calories. Most breastmilk is 20 cal. and mine was 28 so they figured that was surely not the problem. All this time I thought that I just had a normal preemie and that everything would work out. They kept telling me that most preemies catch up by the time they turn two. We have had all kinds of specialists in the mean time. We had to go to a Retina specialist because she had ROP and that finally cured on its own so that was one that we could mark off of our list. The second one came when she was admitted to the hospital for pneumonia. The children's hospital that she was admitted to wanted to get her seen by a genetics doctor while she was there because of her size. This doctor checked a few things and done a MRI because of her hermangyomia (not sure on the spelling)on her back, so they could be sure that it was not interferring with her spinal cord. She recommended eventually that we send off her blood work to the Mircle Foundation to check for RSS. The only thing is that they do not accept her insurance and we can not afford the test. Third came endo. We have been seeing her every six months. She is wanting to put Hailey on GH, but we are very worried about the side affects and everything else that could go on and I really don't want her to have to have a shot every single day. I feel like she has been stuck enough. On the other hand I want to give them to her because I want to do everything possible to help her. I just don't feel it is appropriate to give her the shot when we don't really know why she is not growing and her normal GHs are fine. Fourth came the gastro. For the first 13 months of life, Hailey had severe dirreaha and then it went straight to constapation. She has had the latter every since. Now she is on Lactoluse and has been on it every since we started going to him. He wants to eventually wean her off of it, but probably won't for a while yet. With the last hospital stay (pneumonia again) they are suggesting sending her to an allergy specialist. Hailey has asthma and seems like everything sets it off. We are trying to keep her from getting sick. I don't know if any of you are having all of these problems, but I just don't know what to do. No matter how bad I wantted to, I could not get a job because she stays sick so much and has to go to so many specialist. I am about ready to throw up my hands and say I quit. I know I can't because Hailey needs me so bad, but I am so frustrated. I know this is long so I will post later. If anyone has any suggestions on this please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Hi , My name is and this is the best place to get all the information you need. My daughter is Tori,she is 5 yrs old and weighs 30 lbs and is 39 1/4 ( thats right everyone eles at her cardio apt she grew 1 inch and1/4 ) yeah for her but still the same weight. Any way Tori was diagnosed with RSS in 2001. If I had done my research then I would Have done what ever I could to help her catch up. So ck everything out to your best knowledge and go for it it can only help in the long run. Good luck keep us posted. mom tori 5 rss and gina 2 on sunday! nonrss Hello everyone Hi, I joined this group a few weeks ago and was going to read the posts before posting to the group. I decided to go ahead and post since there are so many post. I am trying to learn about RSS because altough my child has not been tested for this, she shows many of the signs of RSS. Hailey is 3 years old and weighs 20 lbs. She was born 12 weeks early and weighed 1 lb 12 and 1/2 ozs. She was small for her gestational age and grew very slowly while in the NICU. She stayed in the NICU for 68 days until she reached her " going home " weight of 4 lbs. While in the NICU they tested her for everything they could think of (not RSS, but everything else that could go wrong). They even tested my breastmilk to make sure it had enough calories. Most breastmilk is 20 cal. and mine was 28 so they figured that was surely not the problem. All this time I thought that I just had a normal preemie and that everything would work out. They kept telling me that most preemies catch up by the time they turn two. We have had all kinds of specialists in the mean time. We had to go to a Retina specialist because she had ROP and that finally cured on its own so that was one that we could mark off of our list. The second one came when she was admitted to the hospital for pneumonia. The children's hospital that she was admitted to wanted to get her seen by a genetics doctor while she was there because of her size. This doctor checked a few things and done a MRI because of her hermangyomia (not sure on the spelling)on her back, so they could be sure that it was not interferring with her spinal cord. She recommended eventually that we send off her blood work to the Mircle Foundation to check for RSS. The only thing is that they do not accept her insurance and we can not afford the test. Third came endo. We have been seeing her every six months. She is wanting to put Hailey on GH, but we are very worried about the side affects and everything else that could go on and I really don't want her to have to have a shot every single day. I feel like she has been stuck enough. On the other hand I want to give them to her because I want to do everything possible to help her. I just don't feel it is appropriate to give her the shot when we don't really know why she is not growing and her normal GHs are fine. Fourth came the gastro. For the first 13 months of life, Hailey had severe dirreaha and then it went straight to constapation. She has had the latter every since. Now she is on Lactoluse and has been on it every since we started going to him. He wants to eventually wean her off of it, but probably won't for a while yet. With the last hospital stay (pneumonia again) they are suggesting sending her to an allergy specialist. Hailey has asthma and seems like everything sets it off. We are trying to keep her from getting sick. I don't know if any of you are having all of these problems, but I just don't know what to do. No matter how bad I wantted to, I could not get a job because she stays sick so much and has to go to so many specialist. I am about ready to throw up my hands and say I quit. I know I can't because Hailey needs me so bad, but I am so frustrated. I know this is long so I will post later. If anyone has any suggestions on this please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2005 Report Share Posted June 6, 2005 Hi , I also live in Arkansas. Our geneticist is the one who first suspected RSS also. When Aubrey had her growth hormone tested it was on the low side of normal. The endo was the one who actually diagnosed her with RSS though. I was just thinking our girls may have the same doctors since we both live in Arkansas and there aren't really a lot of ped endos and geneticists. Aubrey sees Dr. Fowlkes and Dr Curtis at childrens. Tonya wrote: Thank you . I live in Arkansas and the Genetics doctor was the one that suspects RSS. The endo agrees with this, but is wanting us to switch Genetics doctors so that she can be tested. I have so many questions that I don't even know where to start. The endo is wanting her to start growth hormones now since she is below the 3rd percentile. She is following the growth curve, just one of her own, but it does seem to be consistent. Me and her father are worried about starting the growth hormones because we know very little about the side effects and that sort of thing. I don't want to start her on it just yet because they do not have any clue right now why she is not growing. I would like to find out if everyone else's children's test came out to be normal when the growth hormone was tested. Hailey's were normal, but she is still not growing. Also the test they are going to be using on Hailey for RSS only picks up 10% of the children that have it. Were your tests more accurate? I don't really know where to turn since I have very limited money and only her insurance to rely on. I have more questions, but I will ask them later on. M ( 9 in Heaven), 6 and Hailey 3 > Welcome > > As you can see you foiund the best suppoprt group > there is to find. Make sure you get in touch with the > Magic Foundation. 1-800-3MAGIC3. > > Where do you live? What does the endo have to say > about an RSS diagnosis or have you just discovered > more on RSS to think that it could possibly be that? > > > B > 5 and Kelli 2 3/4 --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Hi Tonya, Sorry it has taken me so long to reply. I am trying to catch up on all the posts. I live closer to Memphis, TN so our geneticist is at the Children's hospital in Memphis. Our endo is at Children's and her name is Dr. Thrailkill. Don't think she has a really great attitude at times and sometimes wish I had other options. We are going to switch to a geneticist at Children's soon. Don't know who we will be getting. I live 55 miles west of Memphis. Maybe someday we could get together. > > Welcome > > > > As you can see you foiund the best suppoprt group > > there is to find. Make sure you get in touch with the > > Magic Foundation. 1-800-3MAGIC3. > > > > Where do you live? What does the endo have to say > > about an RSS diagnosis or have you just discovered > > more on RSS to think that it could possibly be that? > > > > > > B > > 5 and Kelli 2 3/4 > > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 , That would be cool. Sometimes it takes me a long time to reply also depending on how my work schedule looks. That would be neat to get together with someone who is going through something similar to what we're dealing with. Tonya wrote: Hi Tonya, Sorry it has taken me so long to reply. I am trying to catch up on all the posts. I live closer to Memphis, TN so our geneticist is at the Children's hospital in Memphis. Our endo is at Children's and her name is Dr. Thrailkill. Don't think she has a really great attitude at times and sometimes wish I had other options. We are going to switch to a geneticist at Children's soon. Don't know who we will be getting. I live 55 miles west of Memphis. Maybe someday we could get together. > > Welcome > > > > As you can see you foiund the best suppoprt group > > there is to find. Make sure you get in touch with the > > Magic Foundation. 1-800-3MAGIC3. > > > > Where do you live? What does the endo have to say > > about an RSS diagnosis or have you just discovered > > more on RSS to think that it could possibly be that? > > > > > > B > > 5 and Kelli 2 3/4 > > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 Well, it certainly isn't required to have a health food store nearby for SCD. You can definitely do this diet without it. Have you read Elaine Gottschall's book, Breaking the Vicious Cycle? Also, you need to thoroughly read through the btvc.info site as well as the pecanbread.com site. You will want to purchase a probiotic, but make sure that it is a legal form for this diet. Otherwise, you should have no problem finding food in your local grocery. Meleah Hello everyone 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...
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