Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 The most important thing right now is to keep your dad comfortable. Try to get him to drink liquids and get connected with a dietician. If you search through the Message Board you will find many suggestions - mostly a very low fat diet. Try to keep a low stress level for all, you need to help support each other. I will keep an eye on posts today and may be able to do a search to find you more information soon. Right now I need to go to work, but I will keep you in my thoughts and prayers, Gail West, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 The most important thing right now is to keep your dad comfortable. Try to get him to drink liquids and get connected with a dietician. If you search through the Message Board you will find many suggestions - mostly a very low fat diet. Try to keep a low stress level for all, you need to help support each other. I will keep an eye on posts today and may be able to do a search to find you more information soon. Right now I need to go to work, but I will keep you in my thoughts and prayers, Gail West, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Dear , You are clearly in a tough pickle, and I'm very sorry for that, both for you, your father, and for his doctors. Seems theyy're not quite sure what the next step should be, and very naturally, it's leaving you a bit confused. Any chance you could get his doctors together with films, tests, etc., to discuss the next step?? Very difficult, I realize, but if you could, you might possibly be able to draw the wisest, most cohesive, collective diagnosis and further course of action. It's so confusing with this disease what to try next - but if you could get a cohesive decision from all of his caretakers at once, you'd certainly feel a great deal better about proceeding. Yes? All of this, with you involved, of course. I do hope that whatever they do to proceed, it will be something that you will feel good about, as well as both of your folks. I'll be sending extra prayers, as I know hundreds from this list will be doing also. God bless and guide you, the doctors, and your father . Peace & Love, Terry in KC << Hi everyone, hope all is well with you. My Father went to the doctor today to talk to the doctor. His wife is at her wits end with him. He won't eat and he's lost lots of weight since being in the hospital. He says he feel like he's going to throw up so he doesn't eat. I'm not sure it's in his mind because he says he never wants to throw up again since the last time sent him to the hospital for 51 days. The doctor gave him Zoloft because he's depressed. Hopefully, that's not bad for the pancreas. Also, this doctor says his GB is bad when others say it wasn't, including the surgeon. They really know how to confuse you. Also, they talked about taking out his pseudocysts. I think they should try and drain them first so if that's the problem regarding his eating, he can get stronger before any surgery. Does anyone have any thoughts on any of this. We are confused. Thanks so much for your help. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Dear , You are clearly in a tough pickle, and I'm very sorry for that, both for you, your father, and for his doctors. Seems theyy're not quite sure what the next step should be, and very naturally, it's leaving you a bit confused. Any chance you could get his doctors together with films, tests, etc., to discuss the next step?? Very difficult, I realize, but if you could, you might possibly be able to draw the wisest, most cohesive, collective diagnosis and further course of action. It's so confusing with this disease what to try next - but if you could get a cohesive decision from all of his caretakers at once, you'd certainly feel a great deal better about proceeding. Yes? All of this, with you involved, of course. I do hope that whatever they do to proceed, it will be something that you will feel good about, as well as both of your folks. I'll be sending extra prayers, as I know hundreds from this list will be doing also. God bless and guide you, the doctors, and your father . Peace & Love, Terry in KC << Hi everyone, hope all is well with you. My Father went to the doctor today to talk to the doctor. His wife is at her wits end with him. He won't eat and he's lost lots of weight since being in the hospital. He says he feel like he's going to throw up so he doesn't eat. I'm not sure it's in his mind because he says he never wants to throw up again since the last time sent him to the hospital for 51 days. The doctor gave him Zoloft because he's depressed. Hopefully, that's not bad for the pancreas. Also, this doctor says his GB is bad when others say it wasn't, including the surgeon. They really know how to confuse you. Also, they talked about taking out his pseudocysts. I think they should try and drain them first so if that's the problem regarding his eating, he can get stronger before any surgery. Does anyone have any thoughts on any of this. We are confused. Thanks so much for your help. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Dear , You are clearly in a tough pickle, and I'm very sorry for that, both for you, your father, and for his doctors. Seems theyy're not quite sure what the next step should be, and very naturally, it's leaving you a bit confused. Any chance you could get his doctors together with films, tests, etc., to discuss the next step?? Very difficult, I realize, but if you could, you might possibly be able to draw the wisest, most cohesive, collective diagnosis and further course of action. It's so confusing with this disease what to try next - but if you could get a cohesive decision from all of his caretakers at once, you'd certainly feel a great deal better about proceeding. Yes? All of this, with you involved, of course. I do hope that whatever they do to proceed, it will be something that you will feel good about, as well as both of your folks. I'll be sending extra prayers, as I know hundreds from this list will be doing also. God bless and guide you, the doctors, and your father . Peace & Love, Terry in KC << Hi everyone, hope all is well with you. My Father went to the doctor today to talk to the doctor. His wife is at her wits end with him. He won't eat and he's lost lots of weight since being in the hospital. He says he feel like he's going to throw up so he doesn't eat. I'm not sure it's in his mind because he says he never wants to throw up again since the last time sent him to the hospital for 51 days. The doctor gave him Zoloft because he's depressed. Hopefully, that's not bad for the pancreas. Also, this doctor says his GB is bad when others say it wasn't, including the surgeon. They really know how to confuse you. Also, they talked about taking out his pseudocysts. I think they should try and drain them first so if that's the problem regarding his eating, he can get stronger before any surgery. Does anyone have any thoughts on any of this. We are confused. Thanks so much for your help. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Sheldon (29 mo., PDH def., 23 lb) is not eating well recently. He's also been very tired, normally he can walk all over and do things but today he couldn't even sit up at one point. He's often just lying on the floor. He was just at the pediatrician and he couldn't find anything wrong (cold, ear infection, etc.) that would cause this. Do other mito kids go through periods where they won't eat? I've been trying to get as many calories as possible into him. I don't know if he's so tired because he's not eating or if both problems are caused by something else or if he's not eating because he's too tired to eat, which makes him more tired. At 23 pounds, he can't afford to lose any more weight. Any ideas? Thanks. Stacey, mom to: , 11 and Kelsey, 9, both healthy, and Sheldon, 29 mo., PDH def. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Dear , I can only tell you from my experience. Those signs your Sheldon is displaying are definitely worrisome. I am really sorry if I scare you, because it may be nothing at all, but I only know what I have experiences. Of course, the form of mito has a lot to do with it. My girls have Type 5 deficiency, T8993C mutation/ leigh syndrome. I know that one of the first signs of a crisis I see is exhaustion, lack of appetite. I think the lack of appetite is both due to not wanting to eat, and also the fact that it is exhausting to swallow, etc. and takes energy. I remember feeding Samya like a baby, bite ata time and watching her chew. She would get so tired. It would take her 45 minutes to eat half a meal. This was a girl that loved eating, and usually ate fast. Leanna had a crisis in December, where she developed ataxia, would fall over, could hardly walk, needed naps every day, and would be falling asleep by 5pm. She pulled through it. I recommend you see your mito doc because you want tp help him as much as you can to get through this before he gets worse. Good luck, and God bless, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: stace434 Sent: Tuesday, February 24, 2004 1:15 PM To: Mito Subject: Not eating Sheldon (29 mo., PDH def., 23 lb) is not eating well recently. He's also been very tired, normally he can walk all over and do things but today he couldn't even sit up at one point. He's often just lying on the floor. He was just at the pediatrician and he couldn't find anything wrong (cold, ear infection, etc.) that would cause this. Do other mito kids go through periods where they won't eat? I've been trying to get as many calories as possible into him. I don't know if he's so tired because he's not eating or if both problems are caused by something else or if he's not eating because he's too tired to eat, which makes him more tired. At 23 pounds, he can't afford to lose any more weight. Any ideas? Thanks. Stacey, mom to: , 11 and Kelsey, 9, both healthy, and Sheldon, 29 mo., PDH def. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Dear , I can only tell you from my experience. Those signs your Sheldon is displaying are definitely worrisome. I am really sorry if I scare you, because it may be nothing at all, but I only know what I have experiences. Of course, the form of mito has a lot to do with it. My girls have Type 5 deficiency, T8993C mutation/ leigh syndrome. I know that one of the first signs of a crisis I see is exhaustion, lack of appetite. I think the lack of appetite is both due to not wanting to eat, and also the fact that it is exhausting to swallow, etc. and takes energy. I remember feeding Samya like a baby, bite ata time and watching her chew. She would get so tired. It would take her 45 minutes to eat half a meal. This was a girl that loved eating, and usually ate fast. Leanna had a crisis in December, where she developed ataxia, would fall over, could hardly walk, needed naps every day, and would be falling asleep by 5pm. She pulled through it. I recommend you see your mito doc because you want tp help him as much as you can to get through this before he gets worse. Good luck, and God bless, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: stace434 Sent: Tuesday, February 24, 2004 1:15 PM To: Mito Subject: Not eating Sheldon (29 mo., PDH def., 23 lb) is not eating well recently. He's also been very tired, normally he can walk all over and do things but today he couldn't even sit up at one point. He's often just lying on the floor. He was just at the pediatrician and he couldn't find anything wrong (cold, ear infection, etc.) that would cause this. Do other mito kids go through periods where they won't eat? I've been trying to get as many calories as possible into him. I don't know if he's so tired because he's not eating or if both problems are caused by something else or if he's not eating because he's too tired to eat, which makes him more tired. At 23 pounds, he can't afford to lose any more weight. Any ideas? Thanks. Stacey, mom to: , 11 and Kelsey, 9, both healthy, and Sheldon, 29 mo., PDH def. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Dear , I can only tell you from my experience. Those signs your Sheldon is displaying are definitely worrisome. I am really sorry if I scare you, because it may be nothing at all, but I only know what I have experiences. Of course, the form of mito has a lot to do with it. My girls have Type 5 deficiency, T8993C mutation/ leigh syndrome. I know that one of the first signs of a crisis I see is exhaustion, lack of appetite. I think the lack of appetite is both due to not wanting to eat, and also the fact that it is exhausting to swallow, etc. and takes energy. I remember feeding Samya like a baby, bite ata time and watching her chew. She would get so tired. It would take her 45 minutes to eat half a meal. This was a girl that loved eating, and usually ate fast. Leanna had a crisis in December, where she developed ataxia, would fall over, could hardly walk, needed naps every day, and would be falling asleep by 5pm. She pulled through it. I recommend you see your mito doc because you want tp help him as much as you can to get through this before he gets worse. Good luck, and God bless, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: stace434 Sent: Tuesday, February 24, 2004 1:15 PM To: Mito Subject: Not eating Sheldon (29 mo., PDH def., 23 lb) is not eating well recently. He's also been very tired, normally he can walk all over and do things but today he couldn't even sit up at one point. He's often just lying on the floor. He was just at the pediatrician and he couldn't find anything wrong (cold, ear infection, etc.) that would cause this. Do other mito kids go through periods where they won't eat? I've been trying to get as many calories as possible into him. I don't know if he's so tired because he's not eating or if both problems are caused by something else or if he's not eating because he's too tired to eat, which makes him more tired. At 23 pounds, he can't afford to lose any more weight. Any ideas? Thanks. Stacey, mom to: , 11 and Kelsey, 9, both healthy, and Sheldon, 29 mo., PDH def. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Asenath does a lot of this as well. She hasn't eaten well since she was about 1 1/2 years old. Until the g-tube was placed she hardly ever ate. We would squirt baby food in her mouth in desperation and sometimes only get 1/2 a jar of baby food fruit in her all day. After the g-tube was placed she was so malnurished that she gained 10 lbs. in 2 months. She still didn't eat from her mouth much until recently when we started steroids. Then she began eating more until the past month again. She is back to eating very little again and has less energy. Her headaches are worst as well and I think that is part of it. We have always thought the energy to chew was too much plus stroke damage to her appetite center and tummy/eating/swallowing "areas" may be affected somehow to limit her desire to eat. We do notice that the more tired she is the less she eats, and the same goes for when she has viruses and migraines. Keep an eye on him to make sure he isn't getting weaker or dehydrated. Maybe you should start thinking about a g-tube if he doesn't start eating better and doesn't show improvement in his energy level. Hard to think of but definitely worth it to keep him healthy. Darla: mommy to Asenath, Zipporrah, and the gang Not eating Sheldon (29 mo., PDH def., 23 lb) is not eating well recently. He's also been very tired, normally he can walk all over and do things but today he couldn't even sit up at one point. He's often just lying on the floor. He was just at the pediatrician and he couldn't find anything wrong (cold, ear infection, etc.) that would cause this. Do other mito kids go through periods where they won't eat? I've been trying to get as many calories as possible into him. I don't know if he's so tired because he's not eating or if both problems are caused by something else or if he's not eating because he's too tired to eat, which makes him more tired. At 23 pounds, he can't afford to lose any more weight. Any ideas?Thanks.Stacey, mom to:, 11 and Kelsey, 9, both healthy, and Sheldon, 29 mo., PDH def.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Asenath does a lot of this as well. She hasn't eaten well since she was about 1 1/2 years old. Until the g-tube was placed she hardly ever ate. We would squirt baby food in her mouth in desperation and sometimes only get 1/2 a jar of baby food fruit in her all day. After the g-tube was placed she was so malnurished that she gained 10 lbs. in 2 months. She still didn't eat from her mouth much until recently when we started steroids. Then she began eating more until the past month again. She is back to eating very little again and has less energy. Her headaches are worst as well and I think that is part of it. We have always thought the energy to chew was too much plus stroke damage to her appetite center and tummy/eating/swallowing "areas" may be affected somehow to limit her desire to eat. We do notice that the more tired she is the less she eats, and the same goes for when she has viruses and migraines. Keep an eye on him to make sure he isn't getting weaker or dehydrated. Maybe you should start thinking about a g-tube if he doesn't start eating better and doesn't show improvement in his energy level. Hard to think of but definitely worth it to keep him healthy. Darla: mommy to Asenath, Zipporrah, and the gang Not eating Sheldon (29 mo., PDH def., 23 lb) is not eating well recently. He's also been very tired, normally he can walk all over and do things but today he couldn't even sit up at one point. He's often just lying on the floor. He was just at the pediatrician and he couldn't find anything wrong (cold, ear infection, etc.) that would cause this. Do other mito kids go through periods where they won't eat? I've been trying to get as many calories as possible into him. I don't know if he's so tired because he's not eating or if both problems are caused by something else or if he's not eating because he's too tired to eat, which makes him more tired. At 23 pounds, he can't afford to lose any more weight. Any ideas?Thanks.Stacey, mom to:, 11 and Kelsey, 9, both healthy, and Sheldon, 29 mo., PDH def.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Asenath does a lot of this as well. She hasn't eaten well since she was about 1 1/2 years old. Until the g-tube was placed she hardly ever ate. We would squirt baby food in her mouth in desperation and sometimes only get 1/2 a jar of baby food fruit in her all day. After the g-tube was placed she was so malnurished that she gained 10 lbs. in 2 months. She still didn't eat from her mouth much until recently when we started steroids. Then she began eating more until the past month again. She is back to eating very little again and has less energy. Her headaches are worst as well and I think that is part of it. We have always thought the energy to chew was too much plus stroke damage to her appetite center and tummy/eating/swallowing "areas" may be affected somehow to limit her desire to eat. We do notice that the more tired she is the less she eats, and the same goes for when she has viruses and migraines. Keep an eye on him to make sure he isn't getting weaker or dehydrated. Maybe you should start thinking about a g-tube if he doesn't start eating better and doesn't show improvement in his energy level. Hard to think of but definitely worth it to keep him healthy. Darla: mommy to Asenath, Zipporrah, and the gang Not eating Sheldon (29 mo., PDH def., 23 lb) is not eating well recently. He's also been very tired, normally he can walk all over and do things but today he couldn't even sit up at one point. He's often just lying on the floor. He was just at the pediatrician and he couldn't find anything wrong (cold, ear infection, etc.) that would cause this. Do other mito kids go through periods where they won't eat? I've been trying to get as many calories as possible into him. I don't know if he's so tired because he's not eating or if both problems are caused by something else or if he's not eating because he's too tired to eat, which makes him more tired. At 23 pounds, he can't afford to lose any more weight. Any ideas?Thanks.Stacey, mom to:, 11 and Kelsey, 9, both healthy, and Sheldon, 29 mo., PDH def.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Okay, silly question here - what's a g-tube? A feeding tube? Still new to all of this. Are the not eating and not having energy signs of deterioration or maybe just because of stress on his body? Do teething or growing cause too much stress for these guys? And at what point is the weakness cause to see a doc? (I'm just full of questions here > Asenath does a lot of this as well. She hasn't eaten well since she was about 1 1/2 years old. Until the g-tube was placed she hardly ever ate. We would squirt baby food in her mouth in desperation and sometimes only get 1/2 a jar of baby food fruit in her all day. After the g-tube was placed she was so malnurished that she gained 10 lbs. in 2 months. She still didn't eat from her mouth much until recently when we started steroids. Then she began eating more until the past month again. She is back to eating very little again and has less energy. Her headaches are worst as well and I think that is part of it. We have always thought the energy to chew was too much plus stroke damage to her appetite center and tummy/eating/swallowing " areas " may be affected somehow to limit her desire to eat. We do notice that the more tired she is the less she eats, and the same goes for when she has viruses and migraines. Keep an eye on him to make sure he isn't getting weaker or dehydrated. Maybe you should start thinking about a g-tube if he doesn't start eating better and doesn't show improvement in his energy level. Hard to think of but definitely worth it to keep him healthy. > > Darla: mommy to Asenath, Zipporrah, and the gang > > Not eating > > Sheldon (29 mo., PDH def., 23 lb) is not eating well recently. > He's also been very tired, normally he can walk all over and do > things but today he couldn't even sit up at one point. He's often > just lying on the floor. He was just at the pediatrician and he > couldn't find anything wrong (cold, ear infection, etc.) that would > cause this. Do other mito kids go through periods where they > won't eat? I've been trying to get as many calories as possible > into him. I don't know if he's so tired because he's not eating or if > both problems are caused by something else or if he's not > eating because he's too tired to eat, which makes him more > tired. At 23 pounds, he can't afford to lose any more weight. Any > ideas? > > Thanks. > > Stacey, mom to: > , 11 and Kelsey, 9, both healthy, and Sheldon, 29 mo., > PDH def. > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Okay, silly question here - what's a g-tube? A feeding tube? Still new to all of this. Are the not eating and not having energy signs of deterioration or maybe just because of stress on his body? Do teething or growing cause too much stress for these guys? And at what point is the weakness cause to see a doc? (I'm just full of questions here > Asenath does a lot of this as well. She hasn't eaten well since she was about 1 1/2 years old. Until the g-tube was placed she hardly ever ate. We would squirt baby food in her mouth in desperation and sometimes only get 1/2 a jar of baby food fruit in her all day. After the g-tube was placed she was so malnurished that she gained 10 lbs. in 2 months. She still didn't eat from her mouth much until recently when we started steroids. Then she began eating more until the past month again. She is back to eating very little again and has less energy. Her headaches are worst as well and I think that is part of it. We have always thought the energy to chew was too much plus stroke damage to her appetite center and tummy/eating/swallowing " areas " may be affected somehow to limit her desire to eat. We do notice that the more tired she is the less she eats, and the same goes for when she has viruses and migraines. Keep an eye on him to make sure he isn't getting weaker or dehydrated. Maybe you should start thinking about a g-tube if he doesn't start eating better and doesn't show improvement in his energy level. Hard to think of but definitely worth it to keep him healthy. > > Darla: mommy to Asenath, Zipporrah, and the gang > > Not eating > > Sheldon (29 mo., PDH def., 23 lb) is not eating well recently. > He's also been very tired, normally he can walk all over and do > things but today he couldn't even sit up at one point. He's often > just lying on the floor. He was just at the pediatrician and he > couldn't find anything wrong (cold, ear infection, etc.) that would > cause this. Do other mito kids go through periods where they > won't eat? I've been trying to get as many calories as possible > into him. I don't know if he's so tired because he's not eating or if > both problems are caused by something else or if he's not > eating because he's too tired to eat, which makes him more > tired. At 23 pounds, he can't afford to lose any more weight. Any > ideas? > > Thanks. > > Stacey, mom to: > , 11 and Kelsey, 9, both healthy, and Sheldon, 29 mo., > PDH def. > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Stacey, We too have batteled this off and on with . Weight for her has never been an issue-4yrs. old and 53 lbs.; Even when she didn't eat well, she gained weight-this one i never figured out. Anyways, I think just as important as food is the calories and keeping the sugar levels even as much as possible. We were told that gatorade is very good for this. Pediasure would be good for the nutrional value unless he is on a reduced fat diet. had to go on Peptumen Jr. which is a formula that is low in a certain fat. Just like any child, just try to get snacks and fluid into him as much as possible. A lot of children like to graize- snack all day. This with some gatorade would be great. The best diets are the ones that say you should eat 6 sm. meals a day. I have problems with hypoglycemia and this diet works for me and makes me feel better. A gtube is a gastrostomy-tube or a feeding tube. It is placed through the abdomen in a surgery and it goes directly into the stomache. You'll also see us write about the mic-key button- which is the same thing without the long tube. Just like it sounds it is a little button that you attach an extension tubing to when you need to use it. It can be used for meds, supplemental feeding or all feeding. We chose to get this when was about 1 1/2 yrs. old. It has been wonderful. She had dehydration issues and frequently needed to be in the hospital. Now we can supplement with pedialyte right through the tube and skip the hosp. admit a lot more. Never be embarrassed to ask questions here!!! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Stacey, We too have batteled this off and on with . Weight for her has never been an issue-4yrs. old and 53 lbs.; Even when she didn't eat well, she gained weight-this one i never figured out. Anyways, I think just as important as food is the calories and keeping the sugar levels even as much as possible. We were told that gatorade is very good for this. Pediasure would be good for the nutrional value unless he is on a reduced fat diet. had to go on Peptumen Jr. which is a formula that is low in a certain fat. Just like any child, just try to get snacks and fluid into him as much as possible. A lot of children like to graize- snack all day. This with some gatorade would be great. The best diets are the ones that say you should eat 6 sm. meals a day. I have problems with hypoglycemia and this diet works for me and makes me feel better. A gtube is a gastrostomy-tube or a feeding tube. It is placed through the abdomen in a surgery and it goes directly into the stomache. You'll also see us write about the mic-key button- which is the same thing without the long tube. Just like it sounds it is a little button that you attach an extension tubing to when you need to use it. It can be used for meds, supplemental feeding or all feeding. We chose to get this when was about 1 1/2 yrs. old. It has been wonderful. She had dehydration issues and frequently needed to be in the hospital. Now we can supplement with pedialyte right through the tube and skip the hosp. admit a lot more. Never be embarrassed to ask questions here!!! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Stacey, We too have batteled this off and on with . Weight for her has never been an issue-4yrs. old and 53 lbs.; Even when she didn't eat well, she gained weight-this one i never figured out. Anyways, I think just as important as food is the calories and keeping the sugar levels even as much as possible. We were told that gatorade is very good for this. Pediasure would be good for the nutrional value unless he is on a reduced fat diet. had to go on Peptumen Jr. which is a formula that is low in a certain fat. Just like any child, just try to get snacks and fluid into him as much as possible. A lot of children like to graize- snack all day. This with some gatorade would be great. The best diets are the ones that say you should eat 6 sm. meals a day. I have problems with hypoglycemia and this diet works for me and makes me feel better. A gtube is a gastrostomy-tube or a feeding tube. It is placed through the abdomen in a surgery and it goes directly into the stomache. You'll also see us write about the mic-key button- which is the same thing without the long tube. Just like it sounds it is a little button that you attach an extension tubing to when you need to use it. It can be used for meds, supplemental feeding or all feeding. We chose to get this when was about 1 1/2 yrs. old. It has been wonderful. She had dehydration issues and frequently needed to be in the hospital. Now we can supplement with pedialyte right through the tube and skip the hosp. admit a lot more. Never be embarrassed to ask questions here!!! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Stacey, My son is constantly fluctuating between eating well and then hardly eating at all or even wanting to drink. Alot of it is from teething..even now at age 7 1/2. 's weight ranged anywhere from 25 to 35 lbs until the age of five and then all of a sudden he gained just about 30 lbs in one yr. We do crazy things like giving him wet facecloths to chew on or even letting him sit in the tub with the faucet running..just to get the fluids in him.Usually within a few days he will start to eat better. I guess the concern for using a g tube is for when it feeding becomes a constant problem. We were told many times that would need one if he didn't start to gain weight, and sure enough every time the Dr mentioned it miraculously gained weight...lol Basicly like a few moms have already said...just follow your gut instinct. ('s Mama)http://www.geocities.com/jacobchilds Quote Link to comment Share on other sites More sharing options...
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