Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Flo, gotta say it. You're great!! Honored to be in your company, girl. PhillyJude Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Hi : Below are my answers to your questions. Others will chime in, I'm sure. The best source for information about the MGB is on the site www.clos.net There is gobs of information on the site. Is the difference between the Mini-gastric bypass and the RNY only the fact that the mini is done per laparoscope? No. Refer to the clos.net site for diagrams and description of the difference. By the way, RNY is also done lap by quite a few surgeons. Is the actual surgical procedure the same other than that? No, not at all. See above. I am still trying to get insurance approval or should I say predetermined, since BCBS Federal no longer preapproves wls. federal won't pre-approve but they specifically pay for " gastric bypass " surgery for weight loss. I had federal and although they wouldn't pre-certify, they have paid . My daughter also has federal and they paid for her too. Our federal contract with BCBS specifically says that they will pay. They have changed their policy and unfortunately, you can't have them tell you ahead of time that they will pay. When you go to the hospital on the morning of surgery, the hospital calls and gets the approvals. This made me nervous. But it all came together for me and for my daughter and for lots of Dr. Rutledge's other patients. To those of you post-ops, were you confident ahead of time that the lap procedure was safe considering the restricted visibility? At first I was not confident. Because surgeons that don't do lap often say that its better to do surgery without lap. But then I began to learn and look into lap surgery. With the use of the camera, the Dr. actually gets a better look at what he's doing. At clinic, Dr. R has a video which he shows and it becomes apparent just how clearly he can see with the use of the camera. My doc told me that eventually most surgery will be done lap. He believes that it has benefits over the long haul due to the short amount of recovery time, etc. My first surgeon doesn't do the lap for that reason and he is excellent at the lap procedure for surgeries to fix severe reflux and gallbladder removal. The surgeon I have an appointment with on Nov 16 does the lap and it is so tempting for obvious reasons but I am so worried about the safety of it. Any input would be appreciated, , I personally am very comfortable about lap. It's a personal choice for sure. But I will opt any day for lap surgery over having a big old scar with which to get an infection, a hernia, have a tube, etc. A friend of mine had open wls about 5 weeks before I had my MGB. I was way ahead of her in recovery time even with her surgery having been five weeks earlier. Around these parts (Wash, DC area), many many surgeries are done lap. Best wishes making your decision. It's a highly personal decision...which surgery..open or lap...and all we can share with you here is our experience. Mine has been all positive. I would do it again tomorrow if I had to. I've lost 72 pounds and I can't even begin to tell you the other physical and emotional reliefs I have gained from this surgery. My best to you with whatever decision you eventually make. Spend lots of time on the clos.net site. There are huge amounts of information on the site. Flo in land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 KAREN, E-MAIL ME PERSONALLY WITH QUESTIONS. RENEE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 you've started off right, just ask for post-ops to respond, and they will. Infact in about 2 wks I'll be a post-op. haha You know you will have to have someone with you. They won't do the surgery if you don't bring a friend or family member with you. Hopefull someone with alot more knowledge like say... Flo will come on and give you lots of answers, and she would be a great contact person too. Trudy Mgb 11.03.00 new I am new to the group, I tried sending a message before but it didn't work. I am pre-approved by my insurance company for the surgery with Dr. R but now I have to finish my packet. I am trying to get my 10 contacts but I can't get people to respond back to me. Any suggestions? I am hoping to have the surgery around the 22nd of November if I can get everything done. But I need to know more than the patient manual tells me. Which is hard to believe since its soooo detail. I will be traveling from Washington state can anyone give me their experiences traveling out of state. What can I expect. Also, I will be traveling alone. Will that be a problem. Any help would be greatly appreciated. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Hi ! I'm already scheduled to " dance " on Nov. 22, and it would be great to have a " littermate " ! Hope your packet, etc., go smoothly! I plan to stay in Durham for a week like a good boy, since it would be a great hassle to come home and develop complications with which my local docs would be uncomfortable. Luckily, I have a friend in Durham so I don't have to pay for a hotel, and that friend will accompany me to the hospital. (But airfare from Alabama -- ouch!) As far as coming solo, it is possible but not advisable (and you'd have to persuade Dr. R. that you'll somehow have quick response by family members by telephone or other means). If you ask really, really nicely, you may be able to persuade someone on this list or on the Post-Op list who lives near Durham to play " angel " for you and attend as surrogate friend. (Unfortunately, as my friend is playing " angel " for me I'm not comfortable asking her to take on a perfect stranger -- not that anyone's perfect!) Good luck! Jon in Tuscaloosa > > I am new to the group, I tried sending a message before but it didn't > work. I am pre-approved by my insurance company for the surgery with > Dr. R but now I have to finish my packet. I am trying to get my 10 > contacts but I can't get people to respond back to me. Any > suggestions? I am hoping to have the surgery around the 22nd of > November if I can get everything done. But I need to know more than > the patient manual tells me. Which is hard to believe since its soooo > detail. I will be traveling from Washington state can anyone give me > their experiences traveling out of state. What can I expect. Also, > I will be traveling alone. Will that be a problem. Any help would be > greatly appreciated. > > Thank you > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Alan, Why is that. > >Reply-To: MiniGastricBypass (AT) egroups (DOT) com >To: <MiniGastricBypass (AT) egroups (DOT) com> >Subject: Re: new >Date: Tue, 24 Oct 2000 21:42:34 -0500 > > you've started off right, just ask for post-ops to respond, and they >will. >Infact in about 2 wks I'll be a post-op. haha >You know you will have to have someone with you. They won't do the surgery >if you don't bring a friend or family member with you. >Hopefull someone with alot more knowledge like say... Flo will come on >and give you lots of answers, and she would be a great contact person too. >Trudy >Mgb 11.03.00 > > new > > > I am new to the group, I tried sending a message before but it didn't > work. I am pre-approved by my insurance company for the surgery with > Dr. R but now I have to finish my packet. I am trying to get my 10 > contacts but I can't get people to respond back to me. Any > suggestions? I am hoping to have the surgery around the 22nd of > November if I can get everything done. But I need to know more than > the patient manual tells me. Which is hard to believe since its soooo > detail. I will be traveling from Washington state can anyone give me > their experiences traveling out of state. What can I expect. Also, > I will be traveling alone. Will that be a problem. Any help would be > greatly appreciated. > > Thank you > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Hi ! Or, should I say, Howdy neighbor!! I'm so sorry I can't help you out with being a contact, because I'm still preop. That will change on the 1st, though! I wish you well in getting your contacts. I think there is a place on Dr. R's website that says, " email MGB patients. " That's a good place to start. Or *privately* email people who you see post their experiences on this list and ask them if they would be a contact for you. A general posting to the list may not get you the results you need since everyone may think that someone else is probably answering you.... if that makes sense. Where in Washington, may I ask? I'm in Vancouver, literally overlooking the columbia river, and can see Mount Hood and Mount St. Helens from my windows/lanai. (The view today was clear and SPECTACULAR!) If you are close, I'd be open to having coffee sometime. *S* We also have a new email WLS group open to ALL WLS types here in the area. The have even met a couple times to chat in person. nice folks! My very best; Jenn in Vancouver, WA preop 11-1-00 300 Lbs/ BMI 48... but not for long! <<<<<From: morris_karen@... Subject: new I will be traveling from Washington state can anyone give me their experiences traveling out of state. What can I expect. Also, I will be traveling alone. Will that be a problem. Any help would be greatly appreciated. Thank you >>>>>> _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 : The best way to get your contacts is to write personally to people from the list who you can see are post-ops and who say things you enjoy reading. You might also try the clos.net site listing. Not sure how many of those folks are good about responding since I didn't do it that way. You might also ask for a referral..that is, find a post-op, write to him or her and ask him or her for the email address of someone who might be a contact for you then write to that person. My daughter and I both had our 10 contacts in less than 24 hours by just writting personally to folks who post on this list. Flo in land -76 pounds in 4 1/2 months > ** Original Subject: RE: new > ** > ** Original Date: Tue, 24 Oct 2000 20:40:44 -0600 > ** Original Message follows... > > I am new to the group, I tried sending a message before but it didn't > work. I am pre-approved by my insurance company for the surgery with > Dr. R but now I have to finish my packet. I am trying to get my 10 > contacts but I can't get people to respond back to me. Any > suggestions? I am hoping to have the surgery around the 22nd of > November if I can get everything done. But I need to know more than > the patient manual tells me. Which is hard to believe since its soooo > detail. I will be traveling from Washington state can anyone give me > their experiences traveling out of state. What can I expect. Also, > I will be traveling alone. Will that be a problem. Any help would be > greatly appreciated. > > Thank you > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Jenn- My date is Monday the 30th! If all goes well, maybe I will stop by to see how you are doing!!! Take care! MGB 10-30-00 new I will be traveling from Washington state can anyone give me their experiences traveling out of state. What can I expect. Also, I will be traveling alone. Will that be a problem. Any help would be greatly appreciated. Thank you >>>>>> _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Hi Jenn, We are sort of neighbors I live in Federal Way just a couple of hours from Vancouver. I get to look at Mt. Rainier. It would be great to have coffee. Keep me posted on your surgery. Thanks > >Reply-To: MiniGastricBypass (AT) egroups (DOT) com >To: MiniGastricBypass (AT) egroups (DOT) com >Subject: Re: new >Date: Wed, 25 Oct 2000 05:27:12 GMT > >Hi ! > >Or, should I say, Howdy neighbor!! > >I'm so sorry I can't help you out with being a contact, because I'm still >preop. That will change on the 1st, though! > >I wish you well in getting your contacts. I think there is a place on Dr. >R's website that says, " email MGB patients. " That's a good place to start. >Or *privately* email people who you see post their experiences on this list >and ask them if they would be a contact for you. A general posting to the >list may not get you the results you need since everyone may think that >someone else is probably answering you.... if that makes sense. > >Where in Washington, may I ask? I'm in Vancouver, literally overlooking >the >columbia river, and can see Mount Hood and Mount St. Helens from my >windows/lanai. (The view today was clear and SPECTACULAR!) If you are >close, I'd be open to having coffee sometime. *S* We also have a new >email >WLS group open to ALL WLS types here in the area. The have even met a >couple times to chat in person. nice folks! > >My very best; >Jenn in Vancouver, WA >preop 11-1-00 >300 Lbs/ BMI 48... but not for long! > > ><<<<<From: morris_karen@... >Subject: new > >I will be traveling from Washington state can anyone give me >their experiences traveling out of state. What can I expect. Also, >I will be traveling alone. Will that be a problem. Any help would be >greatly appreciated. > >Thank you > >>>>>>> >_________________________________________________________________________ >Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > >Share information about yourself, create your own public profile at >http://profiles.msn.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 , you cannot go alone. Dr. R requires that someone accompany you. Please check into this! You can read my whole experience online. The address is in my signature file. If you have additional questions after reading, please email me directly. Blessings ~Amy. _____________________________________________ Amy S. Poe MGB 5/22/2000 280 * 210 * 140 **FINALLY MY HIPS ARE <50 " !!!!** READ MY STORY ONLINE: http://onhealth.webmd.com/women/in-depth/item/item%2C91744_1_1.asp new I am new to the group, I tried sending a message before but it didn't work. I am pre-approved by my insurance company for the surgery with Dr. R but now I have to finish my packet. I am trying to get my 10 contacts but I can't get people to respond back to me. Any suggestions? I am hoping to have the surgery around the 22nd of November if I can get everything done. But I need to know more than the patient manual tells me. Which is hard to believe since its soooo detail. I will be traveling from Washington state can anyone give me their experiences traveling out of state. What can I expect. Also, I will be traveling alone. Will that be a problem. Any help would be greatly appreciated. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Welcome !!!!!!!!!!!!!!! If you email some post-ops directly, either from the list on Dr.R's website or this group--I am sure you will get responses. I am a pre-op so I can't be a contact, but I wish you a speedy journey and congratulations on your insurance approval!! Peace and love, Ruqayya in Miami Pre-op 11/2/00!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 Gee , I wish I could help you with your questions, but I have never had any of the symptoms you have. I know there will be some help from the other members. I hope they can get to the bottom of this for you soon. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2003 Report Share Posted November 16, 2003 I have substantial bones loss (thanks to my years of carbonate). I am too afraid of fasomax to take it. It scares me to not take it, but it scares me more to think about a gastric bleed. I can't take the risk. Thanks, Vitalady, Inc. T www.vitalady.com If you are interested in PayPal, please click here: https://www.paypal.com/affil/pal=orders%40vitalady.com New > Can someone give me information on taking Fasomax. I had my RNY July > 2002. About 4 months ago I had a dexascan and it showed that bone > disease, number 2 I think it showed. PCP put me on Fasomax. I have > been taking it once a week but I don't know if I should take that or > not. What will happen if I do or don't? I have always taken all my > vits and supplements faithfully. Recently I switched from taking the > calcium citrate pills to taking liquid calcium citrate. Those > calcium citrate pills are so huge! My iron was low also so I am > taking 2 Chromagen pills a day. I take prenatal vits for my multi > vits and get a B-12 shot monthly. I am 5'5 in height, 49 yrs and I > think I am starting to go through menopause. Only symptoms of that > is no periods anymore, crazy moods and night sweats, and waking up > all hours of night. Thank God, I am divorced. I have been a lurker > here since January 2002. Just got brave enough to post this > morning. Any informtion would be helpful. Thanks. > Connie > > Open RNY distal July 25, 2002 > 281/170/125 > Dr. Mark Shina/ Louisville KY > > > > 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 August 14, 2004 Report Share Posted August 14, 2004 I too love chocolate, that is why I got the chocolate protein powder. It helps with the cravings. Sometimes I just have to have that piece of chocolate candy, bite size Snickers. It works great. One of the few things that I can eat without getting sick. Hope this helps. ab03091956 216/156/116 5-10-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 You could try a small sugar free hershey's bar or sugar free peanut butter cups, there pretty good. You can probably get them at Walgreens. Jenna > Hi. In the past couple of days I have been repling to some of the > posts that I have read. I decided that I needed to talk to others > that have had the surgery or going to go through it. I had my > surgery Feb 25, 2004. I weighed 325 day of my surgery and right now > I weigh 239. But when I went for the consultation with the surgeon I > weighed 341(whoa) I will get some updates on my pictures. > > However, I need help. Within the last couple of weeks I have been > craving chocolate. I know that I am not to eat it, but I still love > chocolate. Of course I eat a tiny bite here and there. I don't want > to over do it, but would anyone have an idea how I could curb this > crave? Has anyone else ever had this happen? I need help in the > worst way. > > Just wanted to also say for those who are thinking about having the > surgery........I absolutely would do it again. > > I would appreciate anyone's ideas > ***THANKS***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Pat, Congratulations on having your surgery and joining the losing team!!! I too have tried Viactiv and they are good. Keep up the good work and keep us posted on how your doing. Laurette 4/23/04 open rny 309/290/241/150 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hi, usually I just lurk, had my surgery 8/11/04. I bought Viactov carmel chews they are a calcium supplement plus vitamins D and K. They are delicious. They also come in chocolate. Taste just like a treat. Pat in RI > > Hi. In the past couple of days I have been repling to some of the > > posts that I have read. I decided that I needed to talk to others > > that have had the surgery or going to go through it. I had my > > surgery Feb 25, 2004. I weighed 325 day of my surgery and right > now > > I weigh 239. But when I went for the consultation with the surgeon > I > > weighed 341(whoa) I will get some updates on my pictures. > > > > However, I need help. Within the last couple of weeks I have been > > craving chocolate. I know that I am not to eat it, but I still > love > > chocolate. Of course I eat a tiny bite here and there. I don't > want > > to over do it, but would anyone have an idea how I could curb this > > crave? Has anyone else ever had this happen? I need help in the > > worst way. > > > > Just wanted to also say for those who are thinking about having > the > > surgery........I absolutely would do it again. > > > > I would appreciate anyone's ideas > > ***THANKS***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 , I was told by my surgeon that Viactiv was good to take. Hope this helps. Laurette 4/23/04 open rny 309/290/241/150 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2005 Report Share Posted July 22, 2005 Hi , My 5 year old son was diagnosed with RSS when he was 13 months old. He is currently on growth hormones, an appetite stimulant and two different anti-reflux medications. He will be starting kindergarten in September. was in early intervention and then CPSE (special needs preschool). He currently receives physical therapy, occupational therapy (he has very low muscle tone) and speech therapy. He will also be receiving these services when he goes to kindergarten in September. It is very difficult when both parents aren't on the same page. Debbie in Canada has been through that situation. She is also divorced and she and her ex don't see eye-to-eye on things. The Magic Foundation (magicfoundation.org) is running its annual convention so many people are away. I know that Debbie was not attending this year, so maybe she will be able to respond to you. Good luck, Judith, Steve, (RSS) and (non RSS) 5 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2005 Report Share Posted July 22, 2005 , You have found your support and a whole bunch of people who DO understand what you are going through and what you are feeling. I'm so glad you were able to locate us! As Judith said, most people who post on this list are at the convention in Chicago right now, so things are pretty quiet. I'm usually there, too, but this year I had to skip due to some professional obligations. My 17 year old son Max, who has RSS, is a bit disappointed because he has so much fun there, but he'll get over it. I always say it's like being with family and it's the one place where all our kids can gather and just be NORMAL for a weekend or more. So, start saving your money because you will want to get there next year! I do understand your concerns about your daughter. I do understand your concerns about not being able to keep a job, or be able to be your best at it. I'm a special ed teacher and had to give up my job for years in order to take care of a very sick Max. But now I am thrilled to tell you that he is 5'4 " and still growing, he eats well, he just took driving lessons (although he now has not interest in driving - it lost its glamour for him) and he has friends. The medical appointments are much fewer and more manageable. And I can work again. But I'm not divorced as you are, so that does put more pressure on you, I'm sure. The school issues, well, that is my " specialty " lately. I would like to tell you that Max entered school, was well-liked, got along with everyone, etc. Sadly, that did not happen. When he was in self-contained classes for special ed, he was fine. But when he entered first grade, he was mainstreamed (now called inclusion) and he had more of hard time that I ever knew. Eventually we had to take him out of public school and put him in private until he entered high school. HOWEVER, that is not always the case. There have been many RSS kids who have gone to school and been quite happy, made friends, done well. It just varies for whatever reasons. Just keep posting questions and concerns to us. You will get some of the best answers from anyone with this group. And I hope that Debbie B does read your message and respond. She is good at handling uncooperative ex's. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2005 Report Share Posted July 22, 2005 Hi I'm Debby, the one who Judith referred to from Canada. I have an almost 13 year old son, Adam, whom has RSS. I am divorced as well (I also have a 16 year old daughter). I do so understand how you feel. Adam's father totally does not support the RSS (in fact he told Adam one time when he couldn't reach something and Adam was upset and said " it's the RSS " ; his father told him he just uses THAT as an excuse). Adam does not get his GHT at his father's either. He's old enough, now, that I could probably prepare the needles in advance and send them with him; but to be honest I don't trust his father. Not that he would intentionally harm his son; it's just that I don't know if he would observe all the precautions that are necessary. Adam spends every other weekend with his dad and a week straight in the summer. My endo. has said that it is not a concern for Adam to miss those needles (it's more important over months that he get a consistent amount). One thing I have with my endo. is a schedule of 6 days a week needles. So that works out to a bit more GHT per needle than someone who has shots 7 nights a week. That way, I always do every single night. It works out during the school year..........every 14 days (2 weeks) he should have 12 needles; and he would miss 2 nights out of the 14 at his father's. The summer is different but there are occasions when he does not go to his father's at all; so I figure it all balances out in the end. If you ever need to talk, please email me off list. I am very familiar with the loneliness and the worry when the little one is away. I divorced 9 years ago; so Adam was quite small when he started spending time away from me. It was very worrisome for me. His dad was never one to supervise as much as I felt Adam needed. Also, if you haven't discovered it yet (and I can't remember if Judith referred to it) but you should check out the Magic foundation (www.magicfoundation.com) They have an excellent area on RSS and (as Judith mentioned) have an annual convention in Chicago for RSS (and other growth disorder) families. I've been down twice in the last 6 years. It gives me an opportunity to consult with Dr. H. (you'll see her name here all the time). She has over a 100 RSS patients and is very knowledgeable. She is based in New York (which I can not access). Welcome to this group. You will find that we are a lively bunch with a wide range of issues (there are 2 or 3 of us now with " less than helpful " ex husbands). Take Care Debby New > My daughter was diagnoised in June 2002. It has been very hard on me > because her father and I are divorced. He is not giving her the > growth hormone. I'm sorry,I'm very emotional.I ran into someone at > work who told me to look up little people of America. I'm so > overwhelmed I never thought that I would find a support group. My > daughter Hannah will be six in November and she starts school next > month. I'm so scared for her. The world is so cruel, especially when > they don't understand something. Is their anyone in Indianapolis, > Indiana? That is where we live. Her father has never been their for > her and now he is exercising his summer visitaion. It has been hell. > Everytime she goes over there she comes back with something. It's > like he doesn't care to realize she already has enough on her plate. > Her and I have never been away from each other more than a week. They > won't let me talk to her it has become more of a complex situation > than it should be. I feel so alone and that I have no one to talk to > that truly understands how hard it is going back and forth to the > doctor's officie, not being able to keep a steady job because of all > the appointments. I just want someone to talk to that understands how > I feel. I also have a one year eleven month old son who the doctor's > think something is wrong with him to. They it isn't the same as > Hannah's condition but I scared to let them pick and poke at him I've > already scared one child, I don't want to scar him as well. I don't > know what to do? If anyone could give me some advice I'm open for > suggestions. With love and prayers, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 , I am glad you found our group, and welcome aboard. This will be a great place for you to come and learn so much about RSS, as well as make some new friends who will surely email you privately and will be of great support. I am so sorry to hear about your situation with your ex. That must be very hard. My husband and I are doing well, although there was a time when we weren't. So, I know how hard it can be to try to do things on your own, and not have the support there. I have a son named who is 3 years old. He is doing fairly well, but has to get his nutrition through a feeding tube. He has trouble chewing things and swallowing, but he doesn very well with softer foods that are pureed, or things like ice cream. He enjoys eating and asks for food all the time, but usually either spits it out or gags on it. ( According to Dr. Harbison, the RSS expert out of New Your, he is a little on the heavy side right now. And, we are going to be getting everything set up to go NY and see her and to start growth hormone therapy. ha absolutely no muscle mass right now, so GH will help him there. I know you are missing your daughter a great deal right now, but keep checking in here and post questions you may have. We live in Columbus Ohio, and just drove through Indianapolis as we were driving to the Convention. ) I hope you start feeling better about things. I know it is hard. We were all new to RSS once ourselves, so we all understand. Take care, Jodi R. 's mom p.s. Don't get all of us Jodi's confused! There are several of us here! ) > My daughter was diagnoised in June 2002. It has been very hard on me > because her father and I are divorced. He is not giving her the > growth hormone. I'm sorry,I'm very emotional.I ran into someone at > work who told me to look up little people of America. I'm so > overwhelmed I never thought that I would find a support group. My > daughter Hannah will be six in November and she starts school next > month. I'm so scared for her. The world is so cruel, especially when > they don't understand something. Is their anyone in Indianapolis, > Indiana? That is where we live. Her father has never been their for > her and now he is exercising his summer visitaion. It has been hell. > Everytime she goes over there she comes back with something. It's > like he doesn't care to realize she already has enough on her plate. > Her and I have never been away from each other more than a week. They > won't let me talk to her it has become more of a complex situation > than it should be. I feel so alone and that I have no one to talk to > that truly understands how hard it is going back and forth to the > doctor's officie, not being able to keep a steady job because of all > the appointments. I just want someone to talk to that understands how > I feel. I also have a one year eleven month old son who the doctor's > think something is wrong with him to. They it isn't the same as > Hannah's condition but I scared to let them pick and poke at him I've > already scared one child, I don't want to scar him as well. I don't > know what to do? If anyone could give me some advice I'm open for > suggestions. With love and prayers, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2005 Report Share Posted September 13, 2005 Kim, You should definitely check out the MAGIC foundation at www.magicfoundation.org <http://www.magicfoundation.org/> or call them at 800-3MAGIC3. They will be a wealth of information about RSS as will this great group of people. Most of our children eat very little and are very small as well. Some reach their milestones a little later than their peers because of their size, large head size in proportion to their body, as well as low muscle tone to name a few. Keep in mind that even though there is a genetics test that can confirm RSS, only 10% of RSS diagnosed children test positive for this test (I'm assuming it's the UPD7 test). So a test result may not confirm RSS, and yet Brayden may still have RSS. When our RSS children are young the most important things are to be sure if they are hypoglycemic (which many are) to stabilize their blood sugars, adequate food intake, (many of our children have g-tubes to help with this, since they do not eat enough) and take care of any gastro issues like reflux or delayed stomach emptying or constipation. This is a great group of people and MAGIC is a godsend. Be sure to check them out!!!! Most of us are members (only costs $30/yr) so that we can take advantage of everything they have to offer. They have a medical articles library that is phenomenal!!!! Please free to ask any questions you may have! Dayna _____ From: RSS-Support [mailto:RSS-Support ] On Behalf Of lace66666 Sent: Tuesday, September 13, 2005 12:31 PM To: RSS-Support Subject: New My son Brayden is in a working diagosis of RSS, he was 4lb 11 oz at birth full term. He is now 18months and 15lbs, 28 inches. seems normal except for the doesnt eat a lot, is very small, and he seems to be behind in his talking. We are setting up an app. with a genetics dr on recomendation from an endocronologist, we have had the blood work done to confirm it but its not back yet. Just looking for some input on whats going to happen next, what to expect and any advice. Thanks Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2005 Report Share Posted September 14, 2005 Welcome Kim! I would first like to say that you have come to the right place for support. This is a great group of people here and a great place to come when you need to find out information. My daughter was believed to have RSS, but we recently learned that she is just Small for Gestational Age. Small for Gestational Age children often have many of the same problems as RSS children, so if RSS is ruled out, you are still in the right place. My daughter is 3 and 1/2 and is 34 inches tall and weighs 24lbs. --- lace66666 wrote: > My son Brayden is in a working diagosis of RSS, he > was 4lb 11 oz at > birth full term. He is now 18months and 15lbs, 28 > inches. seems > normal except for the doesnt eat a lot, is very > small, and he seems to > be behind in his talking. We are setting up an app. > with a genetics dr > on recomendation from an endocronologist, we have > had the blood work > done to confirm it but its not back yet. Just > looking for some input > on whats going to happen next, what to expect and > any advice. > > Thanks > Kim > > > > > __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
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