Guest guest Posted July 7, 2001 Report Share Posted July 7, 2001 Dear Jen: I have no experience with G-Tubes but I do not feel that you are being selfish. Your success on the diet may depend on such a decision. It may make Marissa's life much more pleasant to not always be forcing her to drink or eat. I'm with you on the G-Tube-I know surgery is frightening-but so are the seizures and the hospital visits etc. Hugs diane g-tubes > After Marissa's stay in the hospital last weekened, the dietician has been > saying a g-tube would be a really good idea. I am on the fence, please give > opinions. > Marissa does not like to drink, which is the main problem. She maintains on > anywhere from 4 to 14 oz of liquid a day, including the sugar free jello I > use at every meal to make sure she gets at least a little liquid. Then the > more dehydrated she gets, the less she wants to drink. I use syringes, but > if she doesn't want it, believe me, it's not going down. Eating can be a > problem sometimes, too, as you probably all remember me complaining about > not so long ago. Since we've been stuggling for a year and half, the > dietician thinks it's time to put the tube in. I'm worried about > over-reliance on it, though. Would I do less and less oral feeding if I > knew I didn't have to go through the struggle? I'm also worried about > Marissa going through surgery, of course, and of a painful recovery. She's > never had surgery before. How big a deal is it? And is a tube hard to care > for? > But if we had the tube, I would never have to worry about dehydration and > seizures due to that. It might mean less trips to the hospital and that > elusive seizure free year we are looking for. > My husband and I both went in to her ped's office last week to talk about > it. Hubby is adamantly opposed, which may have swayed the doc's opinion, > I'm not sure. The doc said he did not want to do it at this point because > she is gaining weight fine according to her age. My husband thinks I'm > selfish for considering it. Maybe......... > What do you think? > Love > > Jen- Proud mommy to Marissa (3 1/2 Years old, Cortical Dysplasia, > intractable epilepsy, cerebral palsy, keto kid since 12/99, med free since > 6/2000, the light of my life), (22 months, the other light of my > life), and New Baby due August 15, 2001:o) > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2001 Report Share Posted July 7, 2001 It was the hardest decision I made for . And the best. She's still alive because she can still receive nutrition. Despite all the other rigors, surgeries, and everything else that have followed...I don't regret that decision of 7 years ago for one bit!!!! Carol in Michigan Mother of , age 13.5 Metachromatic Leukodystrophy Keto diet since 1995 g-tubes> After Marissa's stay in the hospital last weekened, the dietician has been> saying a g-tube would be a really good idea. I am on the fence, pleasegive> opinions.> Marissa does not like to drink, which is the main problem. She maintainson> anywhere from 4 to 14 oz of liquid a day, including the sugar free jello I> use at every meal to make sure she gets at least a little liquid. Thenthe> more dehydrated she gets, the less she wants to drink. I use syringes,but> if she doesn't want it, believe me, it's not going down. Eating can be a> problem sometimes, too, as you probably all remember me complaining about> not so long ago. Since we've been stuggling for a year and half, the> dietician thinks it's time to put the tube in. I'm worried about> over-reliance on it, though. Would I do less and less oral feeding if I> knew I didn't have to go through the struggle? I'm also worried about> Marissa going through surgery, of course, and of a painful recovery.She's> never had surgery before. How big a deal is it? And is a tube hard tocare> for?> But if we had the tube, I would never have to worry about dehydration and> seizures due to that. It might mean less trips to the hospital and that> elusive seizure free year we are looking for.> My husband and I both went in to her ped's office last week to talk about> it. Hubby is adamantly opposed, which may have swayed the doc's opinion,> I'm not sure. The doc said he did not want to do it at this point because> she is gaining weight fine according to her age. My husband thinks I'm> selfish for considering it. Maybe.........> What do you think?> Love>> Jen- Proud mommy to Marissa (3 1/2 Years old, Cortical Dysplasia,> intractable epilepsy, cerebral palsy, keto kid since 12/99, med free since> 6/2000, the light of my life), (22 months, the other light of my> life), and New Baby due August 15, 2001:o)>> _________________________________________________________________> Get your FREE download of MSN Explorer at http://explorer.msn.com>>> "The Ketogenic Diet....a realistic treatment option, NOT just a lastresort!">> List is for parent to parent support only.> It is important to get medical advice from a professionalketo team!> Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2001 Report Share Posted July 8, 2001 Jen, I am a little biased on this topic, but I think G Tubes can make a huge difference both to your life and Your childs. In my case, I was spending hours every day just trying to get Gaby to take enough fluid to stay hydrated.let alone well nourished.We were also on that viscious circle of sick..won't drink..dehydrated..sick..won't drink..malnourished..sick etc. Once the tube was placed, hydration and nourishment were no longer a problem She grew and even developed more. She was more content, settled, and giving meds..and later the keto diet was a breeze. Gaby still has things orally when she is in the mood..the tube doesn't stop oral intake, and her trips to hospital were drastically reduced (no need for IVs when sick). It is a big decision to make..but don't think of it as a last resort. It is far from that. I feel it is a positive and practicle step toward your childs well being . ne (in Australia). Mum to Gaby 5 years, mito disorder, ketogenic diet, G Tube, microcephaly, global delays, and the prettiest smile. -----Original Message-----From: Jen Marks Sent: Sunday, 8 July 2001 1:39To: ketogenic Subject: g-tubesAfter Marissa's stay in the hospital last weekened, the dietician has been saying a g-tube would be a really good idea. I am on the fence, please give opinions.Marissa does not like to drink, which is the main problem. She maintains on anywhere from 4 to 14 oz of liquid a day, including the sugar free jello I use at every meal to make sure she gets at least a little liquid. Then the more dehydrated she gets, the less she wants to drink. I use syringes, but if she doesn't want it, believe me, it's not going down. Eating can be a problem sometimes, too, as you probably all remember me complaining about not so long ago. Since we've been stuggling for a year and half, the dietician thinks it's time to put the tube in. I'm worried about over-reliance on it, though. Would I do less and less oral feeding if I knew I didn't have to go through the struggle? I'm also worried about Marissa going through surgery, of course, and of a painful recovery. She's never had surgery before. How big a deal is it? And is a tube hard to care for?But if we had the tube, I would never have to worry about dehydration and seizures due to that. It might mean less trips to the hospital and that elusive seizure free year we are looking for.My husband and I both went in to her ped's office last week to talk about it. Hubby is adamantly opposed, which may have swayed the doc's opinion, I'm not sure. The doc said he did not want to do it at this point because she is gaining weight fine according to her age. My husband thinks I'm selfish for considering it. Maybe.........What do you think?LoveJen- Proud mommy to Marissa (3 1/2 Years old, Cortical Dysplasia, intractable epilepsy, cerebral palsy, keto kid since 12/99, med free since 6/2000, the light of my life), (22 months, the other light of my life), and New Baby due August 15, 2001:o)_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2001 Report Share Posted July 8, 2001 Jen, I am a little biased on this topic, but I think G Tubes can make a huge difference both to your life and Your childs. In my case, I was spending hours every day just trying to get Gaby to take enough fluid to stay hydrated.let alone well nourished.We were also on that viscious circle of sick..won't drink..dehydrated..sick..won't drink..malnourished..sick etc. Once the tube was placed, hydration and nourishment were no longer a problem She grew and even developed more. She was more content, settled, and giving meds..and later the keto diet was a breeze. Gaby still has things orally when she is in the mood..the tube doesn't stop oral intake, and her trips to hospital were drastically reduced (no need for IVs when sick). It is a big decision to make..but don't think of it as a last resort. It is far from that. I feel it is a positive and practicle step toward your childs well being . ne (in Australia). Mum to Gaby 5 years, mito disorder, ketogenic diet, G Tube, microcephaly, global delays, and the prettiest smile. -----Original Message-----From: Jen Marks Sent: Sunday, 8 July 2001 1:39To: ketogenic Subject: g-tubesAfter Marissa's stay in the hospital last weekened, the dietician has been saying a g-tube would be a really good idea. I am on the fence, please give opinions.Marissa does not like to drink, which is the main problem. She maintains on anywhere from 4 to 14 oz of liquid a day, including the sugar free jello I use at every meal to make sure she gets at least a little liquid. Then the more dehydrated she gets, the less she wants to drink. I use syringes, but if she doesn't want it, believe me, it's not going down. Eating can be a problem sometimes, too, as you probably all remember me complaining about not so long ago. Since we've been stuggling for a year and half, the dietician thinks it's time to put the tube in. I'm worried about over-reliance on it, though. Would I do less and less oral feeding if I knew I didn't have to go through the struggle? I'm also worried about Marissa going through surgery, of course, and of a painful recovery. She's never had surgery before. How big a deal is it? And is a tube hard to care for?But if we had the tube, I would never have to worry about dehydration and seizures due to that. It might mean less trips to the hospital and that elusive seizure free year we are looking for.My husband and I both went in to her ped's office last week to talk about it. Hubby is adamantly opposed, which may have swayed the doc's opinion, I'm not sure. The doc said he did not want to do it at this point because she is gaining weight fine according to her age. My husband thinks I'm selfish for considering it. Maybe.........What do you think?LoveJen- Proud mommy to Marissa (3 1/2 Years old, Cortical Dysplasia, intractable epilepsy, cerebral palsy, keto kid since 12/99, med free since 6/2000, the light of my life), (22 months, the other light of my life), and New Baby due August 15, 2001:o)_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2001 Report Share Posted July 8, 2001 Well said ne. This is what I was getting at in my reply, but I managed to say it in so many more words! You know, I totally forgot Gaby has a gtube. Must be the school hols getting at me! (Hannah's mum, Australia ) ----- Original Message ----- From: Tony & ne I am a little biased on this topic, but I think G Tubes can make a huge difference both to your life and Your childs........ ...................I feel it is a positive and practicle step toward your childs well being . ne (in Australia). Mum to Gaby 5 years, mito disorder, ketogenic diet, G Tube, microcephaly, global delays, and the prettiest smile. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2001 Report Share Posted July 9, 2001 Hi there My daughter Nakeli is also g-tube fed. Her diet consists of Ross Carbrohydrate Free (RCF), microlipids, polycose powder, and flaxseed oil. I have to say it was a pretty difficult decision for me to make when they suggested she have the g-tube put in. She always had difficulty in swallowing so I had to puree her food, but that never caused any real major health problems for her. When we started the diet, it put me under so much stress as I would literally be standing at her wheelchair all day long feeding her from one meal to the next. And to get every morsel in her was a challenge to say the least, as she would let her food drool down her mouth. She was also getting dehydrated which led to way large ketones and nausea and throwing up a lot of the times. I have to say, having the g-tube was a kind of godsend for us too. Nakeli has never been more healthier, she gets more than enough fluids, her blood work is (most) normal, and the added bonus....I can do other things while she eats! I have talked to other mom's that give their kid's " regular " food through the tube. I personally feel uncomfortable with that. But Nakeli's dietician has calculated in some meals to eat orally alternating with her tube feeding. I'm sorry I didn't catch the original " g-tube " thread. I hope this helps a bit. Shirley, mom to 12yr old ketokid Nakeli. Spas quad CP, grand mal seizures, microcephaly, develop delays, visual/hearing impaired, totally dependant, and a smile that will melt anyone's heart. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2001 Report Share Posted July 9, 2001 Hi there My daughter Nakeli is also g-tube fed. Her diet consists of Ross Carbrohydrate Free (RCF), microlipids, polycose powder, and flaxseed oil. I have to say it was a pretty difficult decision for me to make when they suggested she have the g-tube put in. She always had difficulty in swallowing so I had to puree her food, but that never caused any real major health problems for her. When we started the diet, it put me under so much stress as I would literally be standing at her wheelchair all day long feeding her from one meal to the next. And to get every morsel in her was a challenge to say the least, as she would let her food drool down her mouth. She was also getting dehydrated which led to way large ketones and nausea and throwing up a lot of the times. I have to say, having the g-tube was a kind of godsend for us too. Nakeli has never been more healthier, she gets more than enough fluids, her blood work is (most) normal, and the added bonus....I can do other things while she eats! I have talked to other mom's that give their kid's " regular " food through the tube. I personally feel uncomfortable with that. But Nakeli's dietician has calculated in some meals to eat orally alternating with her tube feeding. I'm sorry I didn't catch the original " g-tube " thread. I hope this helps a bit. Shirley, mom to 12yr old ketokid Nakeli. Spas quad CP, grand mal seizures, microcephaly, develop delays, visual/hearing impaired, totally dependant, and a smile that will melt anyone's heart. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2001 Report Share Posted July 9, 2001 My 17 y.o. son with CF is a possible candidate for a g-tube--he can hook up at night because his CF has always been more trouble digestively than lung function. He is gung-ho for it!! Who would have thought? Because it would be less trouble than counting calories all day long. So IMHO I would not consider this as a last resort either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Hi Jen, We had the same problem. Our daughter tried to drink, but most of it came back into the bib. At age 17 years, she was ill at camp in the summer and vomited and had loose stools. She got terribly dehydrated at that point and was quite ill with her temperature dropping and not coming up. We had agonized for several years about the g-tube. The lack of normalcy, the idea of " defeat " , etc. Even though the g-tube was inserted incorrectly and she almost died from food rotting in her abdomen for 2 days, she has been much healthier on the g-tube. She still eats by mouth, soft foods with a tiny bit of liquid from cup, mainly to rinse out her mouth, but gets liquids primarily in the g-tube. It has solved a lot of problems and ameliorated constipation considerably. That alone was worth it. I still don't give her a lot of fluids as I believe that she is " accustomed " to less than normal amounts. We probably would have had to stop the diet with all the problems with vomiting and refusing to eat if we hadn't had the g-tube. In that sense we are lucky to have it. With better nutrution from having the g-tube you may find that your child will be stronger and able to eat by mouth. Dehydration is a serious condition that, I believe, lowers the quality of life of a child and is very unhealthy. The tube is not too hard to look after. We had a bard button that is nice because it sits close to the skin, but recently changed to a Mic-key as it is easier to change. It sticks out a little bit further from the stomach. Bill Jen Marks wrote: > > After Marissa's stay in the hospital last weekened, the dietician has been > saying a g-tube would be a really good idea. I am on the fence, please give > opinions. > Marissa does not like to drink, which is the main problem. She maintains on > anywhere from 4 to 14 oz of liquid a day, including the sugar free jello I > use at every meal to make sure she gets at least a little liquid. Then the > more dehydrated she gets, the less she wants to drink. I use syringes, but > if she doesn't want it, believe me, it's not going down. Eating can be a > problem sometimes, too, as you probably all remember me complaining about > not so long ago. Since we've been stuggling for a year and half, the > dietician thinks it's time to put the tube in. I'm worried about > over-reliance on it, though. Would I do less and less oral feeding if I > knew I didn't have to go through the struggle? I'm also worried about > Marissa going through surgery, of course, and of a painful recovery. She's > never had surgery before. How big a deal is it? And is a tube hard to care > for? > But if we had the tube, I would never have to worry about dehydration and > seizures due to that. It might mean less trips to the hospital and that > elusive seizure free year we are looking for. > My husband and I both went in to her ped's office last week to talk about > it. Hubby is adamantly opposed, which may have swayed the doc's opinion, > I'm not sure. The doc said he did not want to do it at this point because > she is gaining weight fine according to her age. My husband thinks I'm > selfish for considering it. Maybe......... > What do you think? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Hi Jen, We had the same problem. Our daughter tried to drink, but most of it came back into the bib. At age 17 years, she was ill at camp in the summer and vomited and had loose stools. She got terribly dehydrated at that point and was quite ill with her temperature dropping and not coming up. We had agonized for several years about the g-tube. The lack of normalcy, the idea of " defeat " , etc. Even though the g-tube was inserted incorrectly and she almost died from food rotting in her abdomen for 2 days, she has been much healthier on the g-tube. She still eats by mouth, soft foods with a tiny bit of liquid from cup, mainly to rinse out her mouth, but gets liquids primarily in the g-tube. It has solved a lot of problems and ameliorated constipation considerably. That alone was worth it. I still don't give her a lot of fluids as I believe that she is " accustomed " to less than normal amounts. We probably would have had to stop the diet with all the problems with vomiting and refusing to eat if we hadn't had the g-tube. In that sense we are lucky to have it. With better nutrution from having the g-tube you may find that your child will be stronger and able to eat by mouth. Dehydration is a serious condition that, I believe, lowers the quality of life of a child and is very unhealthy. The tube is not too hard to look after. We had a bard button that is nice because it sits close to the skin, but recently changed to a Mic-key as it is easier to change. It sticks out a little bit further from the stomach. Bill Jen Marks wrote: > > After Marissa's stay in the hospital last weekened, the dietician has been > saying a g-tube would be a really good idea. I am on the fence, please give > opinions. > Marissa does not like to drink, which is the main problem. She maintains on > anywhere from 4 to 14 oz of liquid a day, including the sugar free jello I > use at every meal to make sure she gets at least a little liquid. Then the > more dehydrated she gets, the less she wants to drink. I use syringes, but > if she doesn't want it, believe me, it's not going down. Eating can be a > problem sometimes, too, as you probably all remember me complaining about > not so long ago. Since we've been stuggling for a year and half, the > dietician thinks it's time to put the tube in. I'm worried about > over-reliance on it, though. Would I do less and less oral feeding if I > knew I didn't have to go through the struggle? I'm also worried about > Marissa going through surgery, of course, and of a painful recovery. She's > never had surgery before. How big a deal is it? And is a tube hard to care > for? > But if we had the tube, I would never have to worry about dehydration and > seizures due to that. It might mean less trips to the hospital and that > elusive seizure free year we are looking for. > My husband and I both went in to her ped's office last week to talk about > it. Hubby is adamantly opposed, which may have swayed the doc's opinion, > I'm not sure. The doc said he did not want to do it at this point because > she is gaining weight fine according to her age. My husband thinks I'm > selfish for considering it. Maybe......... > What do you think? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Hi Jen, We had the same problem. Our daughter tried to drink, but most of it came back into the bib. At age 17 years, she was ill at camp in the summer and vomited and had loose stools. She got terribly dehydrated at that point and was quite ill with her temperature dropping and not coming up. We had agonized for several years about the g-tube. The lack of normalcy, the idea of " defeat " , etc. Even though the g-tube was inserted incorrectly and she almost died from food rotting in her abdomen for 2 days, she has been much healthier on the g-tube. She still eats by mouth, soft foods with a tiny bit of liquid from cup, mainly to rinse out her mouth, but gets liquids primarily in the g-tube. It has solved a lot of problems and ameliorated constipation considerably. That alone was worth it. I still don't give her a lot of fluids as I believe that she is " accustomed " to less than normal amounts. We probably would have had to stop the diet with all the problems with vomiting and refusing to eat if we hadn't had the g-tube. In that sense we are lucky to have it. With better nutrution from having the g-tube you may find that your child will be stronger and able to eat by mouth. Dehydration is a serious condition that, I believe, lowers the quality of life of a child and is very unhealthy. The tube is not too hard to look after. We had a bard button that is nice because it sits close to the skin, but recently changed to a Mic-key as it is easier to change. It sticks out a little bit further from the stomach. Bill Jen Marks wrote: > > After Marissa's stay in the hospital last weekened, the dietician has been > saying a g-tube would be a really good idea. I am on the fence, please give > opinions. > Marissa does not like to drink, which is the main problem. She maintains on > anywhere from 4 to 14 oz of liquid a day, including the sugar free jello I > use at every meal to make sure she gets at least a little liquid. Then the > more dehydrated she gets, the less she wants to drink. I use syringes, but > if she doesn't want it, believe me, it's not going down. Eating can be a > problem sometimes, too, as you probably all remember me complaining about > not so long ago. Since we've been stuggling for a year and half, the > dietician thinks it's time to put the tube in. I'm worried about > over-reliance on it, though. Would I do less and less oral feeding if I > knew I didn't have to go through the struggle? I'm also worried about > Marissa going through surgery, of course, and of a painful recovery. She's > never had surgery before. How big a deal is it? And is a tube hard to care > for? > But if we had the tube, I would never have to worry about dehydration and > seizures due to that. It might mean less trips to the hospital and that > elusive seizure free year we are looking for. > My husband and I both went in to her ped's office last week to talk about > it. Hubby is adamantly opposed, which may have swayed the doc's opinion, > I'm not sure. The doc said he did not want to do it at this point because > she is gaining weight fine according to her age. My husband thinks I'm > selfish for considering it. Maybe......... > What do you think? Quote Link to comment Share on other sites More sharing options...
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