Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Hi Kia, Welcome to the site. I have to say the people here have been wonderful and so helpful in giving information and experiences. I was quite clueless when I first came here, but now I feel much more confident talking to doctors about my condition. I'm in the process of interviewing surgeons for my mytomy and because of what I learned here I really feel I can get a good understanding of what each surgeon has to offer. ALso wanted to say that I know how hard it is to eat in public. My sister's wedding is coming up this month, and I'm dreading the reception. I don't think I'll be able to really eat anything. But it'll be good to spend time with family. (Trying to think positive.) Good luck to you Kia! I hope your surgery goes well. -Kathleen > > Hi, I just wanted to say how relieved I am to have found other > achalasians out there... I don't feel so isolated! It's difficult, > as you all know, to have a rare condition as it is impossiple for > anyone to understand what we go through. The reason being for this > is that being able to eat is a simple human thing and is taken for > granted, by those who can eat perfectly well. I know I always > stuffed my face without a second thought, before my achalasia > started. The difficulty in swallowing, for me, started when I was > about 17. My food got more frequently stuck as time got on. Last > year was when the regurgitating of food started. I'm 21 now, and I > am due to have an operation on the 26th of this month (september). > I'm scared as hell but I know I will be so much happier for it. It > was my best friend's birthday the other day, and we were all in a > restaurant. As we looked at our menus everyone was deciding what to > eat ( " oooh, double quarter pounder with extra cheese and fries " ...so > what I would love to eat, but physically can't!)and I burst into > tears. My friend had to take me outside. The only thing I can risk > eating in public is soup. My friend said she would order something > and I could eat off her plate. I did that, seemed to manage ok, got > carried away (I had been on a soup diet for 3 days, some food had't > budged from my oesophugus, and I felt really weak). I did have to > run off once to be sick, but I got most of the food down me, little > bites...and mashed potato, with LOTS OF COCA COLA! Good luck to all > you other achalasians out there! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 le, I'm having an interesting time with my HMO too. I'm not thrilled with the only surgeon in the group that has performed myotomies for achalasia patients. I wanted a second opinion with another surgeon outside the network who does the surgery different. I had to explain to my primary care physician why I wanted another opinion and I had a lot of information from this site to back me up and some articles on- line that I found. It took some convincing, but luckily my PCP approved a second opinion once I gave her all the info. Basically I had to show her that she really didn't know as much about achalasia as she thought and that it was valid to seek a second opinion. But I was prepared to go directly to the insurance company and their appeal process if I had too. Norton has a good suggestion if you have your insurance through work to talk with the benefit's director. I wish you much luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 you're probably gonna have to switch to a preferred provider to get it covered..PPO type > > Hi, I just wanted to say how relieved I am to have found > other > > achalasians out there... I don't feel so isolated! It's difficult, > > as you all know, to have a rare condition as it is impossiple for > > anyone to understand what we go through. The reason being for this > > is that being able to eat is a simple human thing and is taken for > > granted, by those who can eat perfectly well. I know I always > > stuffed my face without a second thought, before my achalasia > > started. The difficulty in swallowing, for me, started when I was > > about 17. My food got more frequently stuck as time got on. Last > > year was when the regurgitating of food started. I'm 21 now, and I > > am due to have an operation on the 26th of this month (september). > > I'm scared as hell but I know I will be so much happier for it. It > > was my best friend's birthday the other day, and we were all in a > > restaurant. As we looked at our menus everyone was deciding what to > > eat ( " oooh, double quarter pounder with extra cheese and > fries " ...so > > what I would love to eat, but physically can't!)and I burst into > > tears. My friend had to take me outside. The only thing I can risk > > eating in public is soup. My friend said she would order something > > and I could eat off her plate. I did that, seemed to manage ok, got > > carried away (I had been on a soup diet for 3 days, some food had't > > budged from my oesophugus, and I felt really weak). I did have to > > run off once to be sick, but I got most of the food down me, little > > bites...and mashed potato, with LOTS OF COCA COLA! Good luck to all > > you other achalasians out there! > > > > > > > > > > > > > > <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia > </FONT><IMG > src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " > > > > > --------------------------------- > > Get your own web address for just $1.99/1st yr. We'll help. > Small Business. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 biggest balloon first seems rather reckless. There'd be major pain with the muscle tearage invoked by that. > > > Hi, I just wanted to say how relieved I am to have > found > > other > > > achalasians out there... I don't feel so isolated! It's > difficult, > > > as you all know, to have a rare condition as it is impossiple > for > > > anyone to understand what we go through. The reason being for > this > > > is that being able to eat is a simple human thing and is taken > for > > > granted, by those who can eat perfectly well. I know I always > > > stuffed my face without a second thought, before my achalasia > > > started. The difficulty in swallowing, for me, started when I > was > > > about 17. My food got more frequently stuck as time got on. Last > > > year was when the regurgitating of food started. I'm 21 now, and > I > > > am due to have an operation on the 26th of this month > (september). > > > I'm scared as hell but I know I will be so much happier for it. > It > > > was my best friend's birthday the other day, and we were all in > a > > > restaurant. As we looked at our menus everyone was deciding what > to > > > eat ( " oooh, double quarter pounder with extra cheese and > > fries " ...so > > > what I would love to eat, but physically can't!)and I burst into > > > tears. My friend had to take me outside. The only thing I can > risk > > > eating in public is soup. My friend said she would order > something > > > and I could eat off her plate. I did that, seemed to manage ok, > got > > > carried away (I had been on a soup diet for 3 days, some food > had't > > > budged from my oesophugus, and I felt really weak). I did have > to > > > run off once to be sick, but I got most of the food down me, > little > > > bites...and mashed potato, with LOTS OF COCA COLA! Good luck to > all > > > you other achalasians out there! > > > > > > > > > > > > > > > > > > > > > <FONT face= " comic sans ms " color=#ff0000 size=5> in > Georgia > > </FONT><IMG > > src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " > > > > > > > --------------------------------- > > > Get your own web address for just $1.99/1st yr. We'll help. > > > Small Business. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Thank you for this information, I have a feeling my specialist has not done many of these surgeries, only dilations. My dad really wants me to have someone do it that knows what they are doing. I guess I will have to talk to my specialist and then find out more from my benefits director."Kathleen R." <eringobrough2@...> wrote: le,I'm having an interesting time with my HMO too. I'm not thrilled with the only surgeon in the group that has performed myotomies for achalasia patients. I wanted a second opinion with another surgeon outside the network who does the surgery different. I had to explain to my primary care physician why I wanted another opinion and I had a lot of information from this site to back me up and some articles on-line that I found. It took some convincing, but luckily my PCP approved a second opinion once I gave her all the info. Basically I had to show her that she really didn't know as much about achalasia as she thought and that it was valid to seek a second opinion. But I was prepared to go directly to the insurance company and their appeal process if I had too. Norton has a good suggestion if you have your insurance through work to talk with the benefit's director. I wish you much luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 So, Dr. Fuller performed your surgery?? I want it done by someone who has had good outcomes, sounds like yours worked, do you have any problems at all now with your esophagus? This is making me really want the surgery, I really have been miserable!toomuchclutter <sandycarroll@...> wrote: Dear le, I'm in Long Beach and had my surgery at Cedars in Beverly Hills. Peggy, in Lompoc fought with her HMO until she gave up and was able to switch to a PPO anyway. She also had surgery at Cedars. She may email you with more hints about how to work around an HMO...California seems to have more HMO issues than other states, as not many others here complain about their HMO's it seems. You absolutely need a second opinion. Unless your specialist is REALLY an achalasia specialist you are in need of more opinions. Honestly, there are so many HMO's here there SHOULD be a real achalasia specialist with Kaiser or some other HMO, but I haven't heard of any. Call the surgeons directly, you are very popular and desired by doctors. They will call you back and talk to you almost immediately. I've heard of a few people seeing other doctors but haven't heard of anyone having surgery yet, with anyone other than Dr. Fuller @ Cedars for achalasia in Southern California...310 652 0530. He is a surgeon though, if you are in the beginning process and want to discuss the pros and cons of surgery call Dr. Ippoliti. http://www.csmc.edu/5865.html This is the esophageal center website. Dr. Conklin is also highly recommended. If you only have one chance at a 2nd opinion I'd go there. There are a few names that have popped up at USC and UCLA, but I don't know anyone who has had surgery there yet with the newer doctors. Both places had well-known surgeons, one retired and one moved, so I THINK they are likely less experienced surgeons there now, but I haven't met them. Z saw a surgeon at UCLA she really likes, but is getting her 2nd opinion from Dr. Fuller. I think she also has some restrictions on where she can go, she might be able to help you get a 2nd. Peggy was pretty far down the line w/ getting a 2nd from her HMO, but it took a lot of letters and phone calls. The surgeons' or gi's office staff will help you with the right wording and what needs to be said. Call me if you would like to talk 562 494 6760. I had surgery in 2003 and can eat and drink everything. With pancakes I need to follow with water. I think I've recovered better than many though. The most important thing to realize is that you should do all you can to prevent your esophagus from stretching. The less stretched your esophagus is, it seems like the more likely you are to get long term results from surgery. Dr. Fuller doesn't think I will ever need more work. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi Also check out the above website. It has summaries of almost every medical article written in years. Be careful of conclusions that are even 5 years old when comparing methods. For instance Botox was hoped and expected to be very helpful. Turned out it isn't. There are excellent older articles about achalasia there also. Sandy in So Cal..... School Started Today!!!!!!! Oh Happy Day. > > Hi, I just wanted to say how relieved I am to have found > other > > achalasians out there... I don't feel so isolated! It's difficult, > > as you all know, to have a rare condition as it is impossiple for > > anyone to understand what we go through. The reason being for this > > is that being able to eat is a simple human thing and is taken for > > granted, by those who can eat perfectly well. I know I always > > stuffed my face without a second thought, before my achalasia > > started. The difficulty in swallowing, for me, started when I was > > about 17. My food got more frequently stuck as time got on. Last > > year was when the regurgitating of food started. I'm 21 now, and I > > am due to have an operation on the 26th of this month (september). > > I'm scared as hell but I know I will be so much happier for it. It > > was my best friend's birthday the other day, and we were all in a > > restaurant. As we looked at our menus everyone was deciding what to > > eat ("oooh, double quarter pounder with extra cheese and > fries"...so > > what I would love to eat, but physically can't!)and I burst into > > tears. My friend had to take me outside. The only thing I can risk > > eating in public is soup. My friend said she would order something > > and I could eat off her plate. I did that, seemed to manage ok, got > > carried away (I had been on a soup diet for 3 days, some food had't > > budged from my oesophugus, and I felt really weak). I did have to > > run off once to be sick, but I got most of the food down me, little > > bites...and mashed potato, with LOTS OF COCA COLA! Good luck to all > > you other achalasians out there!> > > > > > > > > > > > > > <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia > </FONT><IMG > src=" ">> > > > ---------------------------------> > Get your own web address for just $1.99/1st yr. We'll help. > Small Business.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 I know I need to be more assertive about this issue. I want a specialist who treats this disorder. The nurse at Hoag Hospital told me that my current specialist is an excellent doctor, but he has told me he likes to to 'conservative' surgeries. So, I need to find out if he has ever done anything besides a dilation.notan ostrich <notan_ostrich@...> wrote: le Beech wrote:> I have an HMO, I asked my primary doctor if I could get a 2nd opinion, > but he said he feels the specialist is treating this condition accurately.I agree with Sandy that not all specialists are specialists with achalasia. Also, some specialists do dilatations and not myotomies, while some do myotomies and not dilatations, and some do both. If you are being treated by a doctor that only does one he may be reluctant to suggest you need the other. On the other hand, if you get an opinion from a doctor that does one he is likely to believe his way is best. The good news here is that if you go to someone who has treated many patients with achalasia, and is truly an expert with it, you are likely to get good results either way. However, if you go to someone who is suppose to be an expert but has not treated many patients for achalasia you are not nearly as likely to get as good of results. There are articles written by doctors telling about the lessons they learned in the first fifty patients they treated and how the outcomes were better in the next fifty. You don't want to be in the first fifty. Most doctors will never see one patient with achalasia. Some "specialist" don't even recognize it when they see it.I don't think it is right to be denied a second opinion. Certainly not concerning achalasia. If your insurance is through an employer check and see if that employer has a benefits department/person and contact them.notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 I think I confused you, I have had 2 previous dilations, the 3rd one he used the largest balloon, with no relief except for one week! I need to go back to him and see if he has performed any of the myotomies. I don't think he has done many. <empirelimo@...> wrote: biggest balloon first seemsrather reckless. There'd bemajor pain with the muscletearage invoked by that.> > > Hi, I just wanted to say how relieved I am to have > found > > other > > > achalasians out there... I don't feel so isolated! It's > difficult, > > > as you all know, to have a rare condition as it is impossiple > for > > > anyone to understand what we go through. The reason being for > this > > > is that being able to eat is a simple human thing and is taken > for > > > granted, by those who can eat perfectly well. I know I always > > > stuffed my face without a second thought, before my achalasia > > > started. The difficulty in swallowing, for me, started when I > was > > > about 17. My food got more frequently stuck as time got on. Last > > > year was when the regurgitating of food started. I'm 21 now, and > I > > > am due to have an operation on the 26th of this month > (september). > > > I'm scared as hell but I know I will be so much happier for it. > It > > > was my best friend's birthday the other day, and we were all in > a > > > restaurant. As we looked at our menus everyone was deciding what > to > > > eat ("oooh, double quarter pounder with extra cheese and > > fries"...so > > > what I would love to eat, but physically can't!)and I burst into > > > tears. My friend had to take me outside. The only thing I can > risk > > > eating in public is soup. My friend said she would order > something > > > and I could eat off her plate. I did that, seemed to manage ok, > got > > > carried away (I had been on a soup diet for 3 days, some food > had't > > > budged from my oesophugus, and I felt really weak). I did have > to > > > run off once to be sick, but I got most of the food down me, > little > > > bites...and mashed potato, with LOTS OF COCA COLA! Good luck to > all > > > you other achalasians out there!> > > > > > > > > > > > > > > > > > > > > <FONT face="comic sans ms" color=#ff0000 size=5> in > Georgia > > </FONT><IMG > > src=" ">> > > > > > ---------------------------------> > > Get your own web address for just $1.99/1st yr. We'll help. > > > Small Business.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Wow ! my first dilation was good for a good 15 years or so. Make sure to research and get the best in the biz. some things you just can't cut corners on D Mac > > > > Hi, I just wanted to say how relieved I am to have > > found > > > other > > > > achalasians out there... I don't feel so isolated! It's > > difficult, > > > > as you all know, to have a rare condition as it is impossiple > > for > > > > anyone to understand what we go through. The reason being for > > this > > > > is that being able to eat is a simple human thing and is taken > > for > > > > granted, by those who can eat perfectly well. I know I always > > > > stuffed my face without a second thought, before my achalasia > > > > started. The difficulty in swallowing, for me, started when I > > was > > > > about 17. My food got more frequently stuck as time got on. > Last > > > > year was when the regurgitating of food started. I'm 21 now, > and > > I > > > > am due to have an operation on the 26th of this month > > (september). > > > > I'm scared as hell but I know I will be so much happier for > it. > > It > > > > was my best friend's birthday the other day, and we were all > in > > a > > > > restaurant. As we looked at our menus everyone was deciding > what > > to > > > > eat ( " oooh, double quarter pounder with extra cheese and > > > fries " ...so > > > > what I would love to eat, but physically can't!)and I burst > into > > > > tears. My friend had to take me outside. The only thing I can > > risk > > > > eating in public is soup. My friend said she would order > > something > > > > and I could eat off her plate. I did that, seemed to manage > ok, > > got > > > > carried away (I had been on a soup diet for 3 days, some food > > had't > > > > budged from my oesophugus, and I felt really weak). I did have > > to > > > > run off once to be sick, but I got most of the food down me, > > little > > > > bites...and mashed potato, with LOTS OF COCA COLA! Good luck > to > > all > > > > you other achalasians out there! > > > > > > > > > > > > > > > > > > > > > > > > > > > > <FONT face= " comic sans ms " color=#ff0000 size=5> in > > Georgia > > > </FONT><IMG > > > src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " > > > > > > > > > --------------------------------- > > > > Get your own web address for just $1.99/1st yr. We'll help. > > > > > Small Business. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Dear le, He has done hundreds. His group specializes in thoracic surgery and within the group he is the esophagus specialist. He spent a year doing manometries somewhere in his career. Dr. Ippoliti, a gi, who is very highly regarded sends all his patients to him, and my understanding is he no longer recommends dialations first. Dr. Ippoliti used to be at UCLA, before he went to Cedars I had a dialation with him that was very successful for about a year. Although he wasn't definitive at that time he said the dialation was worth a shot. In that time he went to Cedars, and after working w/ Dr. Fuller switched to surgery as the first option, he no longer even suggests a dialation first. Of course that is all assuming your overall health is good and nothing would contra indicate surgery. I have absolutely no problems. Well, the only problem I have is a build up of saliva that can irritate my cough reflex if I am talking quite a bit. That is because there is no peristalysis. I have a spasm every once in a while. I eat everything. But... I don't think most people have quite as much success as I do. I still wash food down with water at the end and during a meal if water is handy, but it isn't an absolute necessity as it is for some. Your life will improve drastically after surgery. For those of us on the other side it seems like it is an easy decision. However each person needs to go down the path of discovery. Along that path you learn a lot. But the short answer is, find the absolute best surgeon you can and schedule your surgery ASAP. Since your specialist is messing around w/ dialations and you aren't having good results your specialist is not an achalasia specialist and you have reached the limits of his/her expertise. Getting more advice from him/her is useless. Sandy in So Cal> > > Hi, I just wanted to say how relieved I am to have found > > other > > > achalasians out there... I don't feel so isolated! It's difficult, > > > as you all know, to have a rare condition as it is impossiple for > > > anyone to understand what we go through. The reason being for this > > > is that being able to eat is a simple human thing and is taken for > > > granted, by those who can eat perfectly well. I know I always > > > stuffed my face without a second thought, before my achalasia > > > started. The difficulty in swallowing, for me, started when I was > > > about 17. My food got more frequently stuck as time got on. Last > > > year was when the regurgitating of food started. I'm 21 now, and I > > > am due to have an operation on the 26th of this month (september). > > > I'm scared as hell but I know I will be so much happier for it. It > > > was my best friend's birthday the other day, and we were all in a > > > restaurant. As we looked at our menus everyone was deciding what to > > > eat ("oooh, double quarter pounder with extra cheese and > > fries"...so > > > what I would love to eat, but physically can't!)and I burst into > > > tears. My friend had to take me outside. The only thing I can risk > > > eating in public is soup. My friend said she would order something > > > and I could eat off her plate. I did that, seemed to manage ok, got > > > carried away (I had been on a soup diet for 3 days, some food had't > > > budged from my oesophugus, and I felt really weak). I did have to > > > run off once to be sick, but I got most of the food down me, little > > > bites...and mashed potato, with LOTS OF COCA COLA! Good luck to all > > > you other achalasians out there!> > > > > > > > > > > > > > > > > > > > > <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia > > </FONT><IMG > > src=" ">> > > > > > ---------------------------------> > > Get your own web address for just $1.99/1st yr. We'll help. > > Small Business.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 I feel you are right about my specialist, I know he handles all types of tummy problems, but I know he is not an achalasia specialist, just from reading what everyone has written. I do have thyroid nodules, that they have been watching for the past 5 years. I guess i need to give Dr. Fuller a call. toomuchclutter <sandycarroll@...> wrote: Dear le, He has done hundreds. His group specializes in thoracic surgery and within the group he is the esophagus specialist. He spent a year doing manometries somewhere in his career. Dr. Ippoliti, a gi, who is very highly regarded sends all his patients to him, and my understanding is he no longer recommends dialations first. Dr. Ippoliti used to be at UCLA, before he went to Cedars I had a dialation with him that was very successful for about a year. Although he wasn't definitive at that time he said the dialation was worth a shot. In that time he went to Cedars, and after working w/ Dr. Fuller switched to surgery as the first option, he no longer even suggests a dialation first. Of course that is all assuming your overall health is good and nothing would contra indicate surgery. I have absolutely no problems. Well, the only problem I have is a build up of saliva that can irritate my cough reflex if I am talking quite a bit. That is because there is no peristalysis. I have a spasm every once in a while. I eat everything. But... I don't think most people have quite as much success as I do. I still wash food down with water at the end and during a meal if water is handy, but it isn't an absolute necessity as it is for some. Your life will improve drastically after surgery. For those of us on the other side it seems like it is an easy decision. However each person needs to go down the path of discovery. Along that path you learn a lot. But the short answer is, find the absolute best surgeon you can and schedule your surgery ASAP. Since your specialist is messing around w/ dialations and you aren't having good results your specialist is not an achalasia specialist and you have reached the limits of his/her expertise. Getting more advice from him/her is useless. Sandy in So Cal> > > Hi, I just wanted to say how relieved I am to have found > > other > > > achalasians out there... I don't feel so isolated! It's difficult, > > > as you all know, to have a rare condition as it is impossiple for > > > anyone to understand what we go through. The reason being for this > > > is that being able to eat is a simple human thing and is taken for > > > granted, by those who can eat perfectly well. I know I always > > > stuffed my face without a second thought, before my achalasia > > > started. The difficulty in swallowing, for me, started when I was > > > about 17. My food got more frequently stuck as time got on. Last > > > year was when the regurgitating of food started. I'm 21 now, and I > > > am due to have an operation on the 26th of this month (september). > > > I'm scared as hell but I know I will be so much happier for it. It > > > was my best friend's birthday the other day, and we were all in a > > > restaurant. As we looked at our menus everyone was deciding what to > > > eat ("oooh, double quarter pounder with extra cheese and > > fries"...so > > > what I would love to eat, but physically can't!)and I burst into > > > tears. My friend had to take me outside. The only thing I can risk > > > eating in public is soup. My friend said she would order something > > > and I could eat off her plate. I did that, seemed to manage ok, got > > > carried away (I had been on a soup diet for 3 days, some food had't > > > budged from my oesophugus, and I felt really weak). I did have to > > > run off once to be sick, but I got most of the food down me, little > > > bites...and mashed potato, with LOTS OF COCA COLA! Good luck to all > > > you other achalasians out there!> > > > > > > > > > > > > > > > > > > > > <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia > > </FONT><IMG > > src=" ">> > > > > > ---------------------------------> > > Get your own web address for just $1.99/1st yr. We'll help. > > Small Business.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 > Have any of you experienced weight gain post surgery? My 13 yr old daughter lost 50 lbs from A. She was overweight to begin with, but she's really thin now. Her surgery was 11 wks ago tomorrow and has not gained anything back. Her Dr stated it's all in what she eats, but I'm not so sure. My daughter has never been overweight and in the five months it took from her having initial symptoms - she was 5yo - to her getting her op, she didn't lose, just stopped doing things to conserve energy. She became listless and tired looking but because she wasn't losing weight wasn't considered to be urgent. Post-op she didn't gain weight, just continued along her until them established growth pattern i.e. between the 25 and 50 centile on our child health charts here in the UK. She had to have surgery again in Jan this year, 3.5 years after the initial operation because she was still having problems swallowing. She still hasn't put on lots of weight, other than continuing to grow normally, mostly upwards since she can still at 9yo wear waistbands for 5yo! She eats a good, varied and mostly healthy diet and more food than most children her age but she also goes horse riding once a week, does lots of dancing and sport at school so no doubt needs the calories to keep her going. Perhaps your daughter's body is just going through a period of adjustment as the weight redistributes itself, not unusual in teens! I was the same weight from 11yo to 18yo but in those eight years, I changed from a chubby child to a svelte young woman. Natascha Kampusch, the Austrian teenager who was kidnapped and kept in a basement cell for eight years, is reported to weigh less now than she did when she disappeared but she didn't look skinny and undernourished when she appeared on TV last night. I do think it's dififcult having watched your child go through all these terrible eating difficulties not to obsess about everything they eat (I mentally assess DD's eating and health every single day even though she leads pretty much a normal life) but really it's prob best to kick back and relax. Easier said than done, I know :-) Sorry that was such a long post but hope it helped. --Sue Mum to Stephi, 9yo Nottingham, UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Hello Sue, Thank you so much for your post. I realize this is a difficult discease for anyone, but when it's your child it seems harder. As the parent we can't relate to what they are going thru unless of course we've been thru it ourselves, but just having the support from other parents that are going thru the same thing helps in a tremendous way. Pardon my ignorance to the UK slang if you will, but how old is your daughter? And which surgery did she have. is like any normal child I guess, she's not a couch potatoe, but she's not to the extreme of an over active child like her older brother. She's eating good, for what she can eat. I know I can blame some of her thinness on her father, I look back at pictures of his younger days and I see a lot of my . She's 5'10" or better now and might be pushing 135 soaking wet, I wish I could say the same for myself, but we know how that goes. Anyway, she's healthy, so I can't complain otherwise. Patty in FLsue_woollett <sue.ol@...> wrote: > Have any of you experienced weight gain post surgery? My 13 yr old daughter lost 50 lbs from A. She was overweight to begin with, but she's really thin now. Her surgery was 11 wks ago tomorrow and has not gained anything back. Her Dr stated it's all in what she eats, but I'm not so sure.My daughter has never been overweight and in the five months it took from her having initial symptoms - she was 5yo - to her getting her op, she didn't lose, just stopped doing things to conserve energy. She became listless and tired looking but because she wasn't losing weight wasn't considered to be urgent.Post-op she didn't gain weight, just continued along her until them established growth pattern i.e. between the 25 and 50 centile on our child health charts here in the UK.She had to have surgery again in Jan this year, 3.5 years after the initial operation because she was still having problems swallowing. She still hasn't put on lots of weight, other than continuing to grow normally, mostly upwards since she can still at 9yo wear waistbands for 5yo! She eats a good, varied and mostly healthy diet and more food than most children her age but she also goes horse riding once a week, does lots of dancing and sport at school so no doubt needs the calories to keep her going. Perhaps your daughter's body is just going through a period of adjustment as the weight redistributes itself, not unusual in teens! I was the same weight from 11yo to 18yo but in those eight years, I changed from a chubby child to a svelte young woman. Natascha Kampusch, the Austrian teenager who was kidnapped and kept in a basement cell for eight years, is reported to weigh less now than she did when she disappeared but she didn't look skinny and undernourished when she appeared on TV last night.I do think it's dififcult having watched your child go through all these terrible eating difficulties not to obsess about everything they eat (I mentally assess DD's eating and health every single day even though she leads pretty much a normal life) but really it's prob best to kick back and relax. Easier said than done, I know :-)Sorry that was such a long post but hope it helped.--SueMum to Stephi, 9yoNottingham, UK Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 Hello I'm new to this group I recently discovered Coconut Oil. It has cleared my skin completely. I was wondering if anyone here has used Coconut Oil to treat HIV or other viruses. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2009 Report Share Posted August 22, 2009 Visit this website for very specific applications of coconut oil and results relative to HIV cases: http://www.coconutoil.com/hiv.htm. Other websites to visit are the following: - http://www.coconutresearchcenter.com/hwnl_4-3.htm - http://www.coconutresearchcenter.org/virgincoconutoil.htm - http://www.earthclinic.com/Remedies/coconut_oil15.html. > > > Hello I'm new to this group I recently discovered Coconut Oil. It has cleared my skin completely. I was wondering if anyone here has used Coconut Oil to treat HIV or other viruses. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Thank you very much for the information. From: ememiturralde <ememiturralde@...> Subject: Re: new to this group! Coconut Oil Date: Saturday, August 22, 2009, 1:22 AM  Visit this website for very specific applications of coconut oil and results relative to HIV cases: http://www.coconuto il.com/hiv. htm. Other websites to visit are the following: - http://www.coconutr esearchcenter. com/hwnl_ 4-3.htm - http://www.coconutr esearchcenter. org/virgincoconu toil.htm - http://www.earthcli nic.com/Remedies /coconut_ oil15.html. > > > Hello I'm new to this group I recently discovered Coconut Oil. It has cleared my skin completely. I was wondering if anyone here has used Coconut Oil to treat HIV or other viruses. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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