Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 --- dgregori dgregori@...> wrote: > We swear by crystlized ginger in our house. Where do you get that? Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 --- venomvw pamcroy@...> wrote: > He's gaining weight, not losing. ???? Sorry, I > don't get it. He's > not eating or drinking but he's gaining weight ? Is > he sneaking food This is very common in mito. Many patients gain weight while they take in inadequate calories. Ask Joanne. One daughter gained weight on very low fat diet of 1200 calories and the other finally started losing when she cut calories down to 500-600 per day. This is NOT a psychiatric problem. It's an issue with his GI tract. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Music Unlimited Access over 1 million songs. Try it free. http://music.yahoo.com/unlimited/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 Sorry, taking in nothing but a glass of milk everyday is not sufficient calories to cause weight gain. The other diets you described have different biochemical components than starvation. Physiological problems often have coinciding psychological effects. We are not doctors here and therefore, if your son is not taking in proper nutrition and hydration you should be calling his physician immediately. You don't have to agree that he needs a psychologist ( why this is a big issue for you i don't know ) but if the poor kid is suffering, I think his doctor needs to know right away. Don't wait until he's hospitalized for these issues. Blood in his stools is potentially serious in and of itself. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Hi , Could any of his meds be causing his nausea? Is it possible to try eliminating one at a time to see if there is any improvement? I am very sensitive to meds. Even after surgery, I was unable to take pain meds without throwing up. They tried about 6 different kinds and gave up. Gingerale with a few spoonfuls of non fat froze vanilla yogurt might help him get something into him. Or have you tried gatorade or propel? Popsicles until the nausea goes away. Then yogurt/mango or yogurt/banana/pineapple fruit smoothies. If he did ok with that you could add protein powder. Has he tried saltines? If nothing works, I would definitely try some probiotics taken before or during or after he eats and everytime he has something more than water. I have been surprised that that addition started clearing things up for me once. Adam <<<<<<<<<<<<<<<<<<<<<<<<< He won't eat or drink. Today he's had about six ounces > of milk, his neurontin, lamictal and one dose of > carnitine and one dose of CoQ10. That's not too > uncommon in him. He's gaining weight, not losing. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 ginger popsicles are sold under Preggy pops online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Okay, I understand now. But I would caution to say that not all liquid formulations taste bad, there are zounds of flavors out there now, the local pharmacies have been advertising them for a while (something like 50 flavors). But perhaps others on this list on liquid formulations can give you some ideas. It's a shame that a GI doctor or nutritionist can't work with him to find the foods he can tolerate (bananas, rice, toast I'm sure were tried). I think if you were talking about yourself, I would say think about some other way of nutrition, like TPN, but it sounds like that might be more than difficult. I can't imagine convincing a 17- year old to comply with what we go through, my 8-year old was being very oppositional over a stupid item this morning, just to be oppositional. Has he had a gall bladder evaluation (mine was bad and should come out, but I had no other signs than nausea and intolerance for fat)? Does he email or talk to anyone else his age with similar problems? BTW, I used to drink about 2 quarts of milk per day when I was pregnant, I think I was craving it because I wasn't getting good enough nutrition (I was nauseous as well). Anyway, our thoughts are with you, hope things start to change for the better... Take care, RH > > > Anorexia (not eating or drinking) can cause nausea, > > certainly. Have > > you tried a social worker or psychiatrist to get him > > to comply? (for > > me, the threat of a psychologist visit worked, LOL!) > > > This is not a psychiatric problem. It's a > physiological problem. He's not eating or drinking > because he has nausea and severe abdominal pain. The > thing that has kept him going is milk. He now thinks > that the milk is hurting and not helping. He sees a > counselor. This is NOT a psychological problem. Using > a liquid formulation would not help either. It tastes > really bad and that would be worse for him, not > better. He's going to be 17 next week and liquid meds > aren't the answer. > > He's tried slim fast, ensure, Boost, propel, water, > milk, CIB, etc. It all causes nausea and abdominal > pain. This is not psychological. He also has blood in > his stools. This is entirely physiological. He's also > NOT losing weight. He's gaining. The gaining has > slowed down a bit, at least. He's gained about 60 > pounds in the last year or so. > > > > Mom to the two best kids in the world! > http://www.caringbridge.org/visit/thomasandkatie > > > > > __________________________________ > Yahoo! Mail - PC Magazine Editors' Choice 2005 > http://mail.yahoo.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 I have to agree with bug unfortunately, a glass of milk is around 150 calories, unless you mean a " big " glass of milk (a quart would be 600 calories). I wonder about edema and other things We all care and are trying to help - many of us have continual pain and nausea, and as someone in that category, I can say that even if the pain is physiological, sometimes how we deal with it depends on our mental state (will the pain go away? is it worse today than yesterday? if I am in pain, will I be able to rest or do I have to be active? do my family, friends, and doctors appreciate my level of pain?) It took me about 20 doctors to find someone who was able to track my case and get me some help, and then I had to go 1,000 miles to another doctor for my muscle biopsy and another treatment plan which has helped me a lot. I don't know what to think if you are taking him to doctors and they are not concerned about his not eating. Lots of ((HUGS)), it really sounds like these issues are preying on you, make sure you take care of yourself as well... Take care, RH > > Sorry, taking in nothing but a glass of milk everyday is not > sufficient calories to cause weight gain. The other diets you > described have different biochemical components than starvation. > Physiological problems often have coinciding psychological effects. > We are not doctors here and therefore, if your son is not taking in > proper nutrition and hydration you should be calling his physician > immediately. You don't have to agree that he needs a psychologist ( > why this is a big issue for you i don't know ) but if the poor kid is > suffering, I think his doctor needs to know right away. Don't wait > until he's hospitalized for these issues. Blood in his stools is > potentially serious in and of itself. > > bug > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 > If nothing works, I would definitely try > some probiotics taken before or during or after he eats and > everytime he has something more than water. I have been surprised > that that addition started clearing things up for me once. I have to agree STRONGLY with Adam, probiotics, namely acidophilus and similar " good bacteria " in my case, are something I HAVE to take every day, or I get very nauseous and have other yeast infection symptoms. They are VERY safe IMHO, and I take about 60 billion active cells per day (a big dose) to maintain my health. Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 I order it online from www.thegingerpeople.com. As a matter of fact, I ordered more earlier today. Sometimes you can get it in bulk food stores. Van Verst wrote: >--- dgregori dgregori@...> wrote: > > > >>We swear by crystlized ginger in our house. >> >> > >Where do you get that? > > > >Mom to the two best kids in the world! >http://www.caringbridge.org/visit/thomasandkatie > > > > >__________________________________ >Yahoo! Mail - PC Magazine Editors' Choice 2005 >http://mail.yahoo.com > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Bug, I'm not a physician but I am a well educated nurse with several degrees. I never said that my son had only one glass of milk only each day. I mentioned that by mid afternoon one day he'd had a glass of milk. He has been drinking about half to 3/4 gallon of milk daily and gains weight. This CAN happen. He is under GI care AND under a counselor's care (among other specialists). But THIS problem is totally physiological in nature. Mito patients can and do gain weight on inadequate calories. It upsets me when people jump on the psych bandwagon without all the details. --- venomvw pamcroy@...> wrote: > Sorry, taking in nothing but a glass of milk > everyday is not > sufficient calories to cause weight gain. The other > diets you > described have different biochemical components than > starvation. > Physiological problems often have coinciding > psychological effects. > We are not doctors here and therefore, if your son > is not taking in > proper nutrition and hydration you should be calling > his physician > immediately. You don't have to agree that he needs > a psychologist ( > why this is a big issue for you i don't know ) but > if the poor kid is > suffering, I think his doctor needs to know right > away. Don't wait > until he's hospitalized for these issues. Blood in > his stools is > potentially serious in and of itself. > > bug > > > > Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 --- AdamM321 AdamM321@...> wrote: > Hi , > > Could any of his meds be causing his nausea? Adam, I wonder about his meds but he didn't start any meds around the time that the nausea worsened. He has had more GI bleeding lately and I'm afraid that that is the problem. The GI wants to scope him again. He has had increased eosinophils in the past and I do wonder if that, along with the von Willebrand's disease (bleeding d/o), contributes to the abdominal pain and nausea. The GI is wondering about adding an irritable bowel diagnosis to the mix but that really is more of a garbage can diagnosis as it is often given when nobody really knows what the problem is. We dont' do anything simply in our household. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 --- z39z@... wrote: when > there is a > physiological cause for disease is a waste of time > and energy, and can > delay correct treatment, sometimes to the point of > being life > threatening, imho. If the physiological problems > have coinciding > psychological effects, does it not make sense to try > to fix the > underlying physiological irregularity? Too many > people, including some > health care professionals, draw the causative arrow > in the wrong > direction, imho. We can all empathize with those of > us who have been > wrongly told their problems are not physiologically > based because the > provider knew nothing about mito or other diseases > that are not common. > Of course, once correctly diagnosed with a > physiological problem - > and presumably treated with the best available > treatment - if we seek > out counseling for help with the disease, that is a > most reasonable > thing to do. It is just the presumption of what is > the first cause > that is a big issue for me. > Sunny, You expressed this exactly how I wanted to but did not. My son has been accused of faking it. He just had neuropsych testing on Wednesday. The neuropsych administered a test for malingering just because this has been an accusation we've faced many times. My son has depression and our long time psychiatrist said that his problems are organic in nature and that the psychiatric issues would never be fixed without fixing the underlying physiologic issues. I have been accused of mbp too. Many people in the medical profession are quick to blame psychiatric issues when they don't understand the disease process. They are not nearly as quick to learn about the disease process as they are to blame. The problem is that many of these physiologic problems are NOT easy to fix. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Music Unlimited Access over 1 million songs. Try it free. http://music.yahoo.com/unlimited/ Quote Link to comment Share on other sites More sharing options...
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