Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 The decision of whether or not to tube feed is a complicated one. But in my humble opinion, if your child is not eating for a day or so at a time, or even for half a day and is symptomatic, then she has to be fed one way or another. When this happens, do you check for ketones? Do you check blood sugar? Our kids do not have enough stores of glycogen, fat, sugars to go for any length of time without food. If this is a pattern and it goes on for 2(!!) weeks at a time, then you have to have some sort of back-up plan to get food into her. I cannot stress this enough. That brain will take whatever it can to get what it needs at the cost to the rest of the body. A whole chemical reaction results and it can get complicated, as has found out with Dasia - and experienced with Ian. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 The decision of whether or not to tube feed is a complicated one. But in my humble opinion, if your child is not eating for a day or so at a time, or even for half a day and is symptomatic, then she has to be fed one way or another. When this happens, do you check for ketones? Do you check blood sugar? Our kids do not have enough stores of glycogen, fat, sugars to go for any length of time without food. If this is a pattern and it goes on for 2(!!) weeks at a time, then you have to have some sort of back-up plan to get food into her. I cannot stress this enough. That brain will take whatever it can to get what it needs at the cost to the rest of the body. A whole chemical reaction results and it can get complicated, as has found out with Dasia - and experienced with Ian. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 One more thing: if your child IS eating, but is not eating enough or getting enough calories, that is another reason to consider tube feeds. But other methods are usually tried first, including Periactin to stimulate the appetite. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 I sent a " stronger opinion " privately - but, I wholeheartedly agree with Jodi. Thank you for sharing your thoughts Jodi Z. - H > > The decision of whether or not to tube feed is a complicated one. But > in my humble opinion, if your child is not eating for a day or so at a > time, or even for half a day and is symptomatic, then she has to be > fed one way or another. > > When this happens, do you check for ketones? Do you check blood > sugar? Our kids do not have enough stores of glycogen, fat, sugars to > go for any length of time without food. If this is a pattern and it > goes on for 2(!!) weeks at a time, then you have to have some sort of > back-up plan to get food into her. I cannot stress this enough. That > brain will take whatever it can to get what it needs at the cost to > the rest of the body. A whole chemical reaction results and it can > get complicated, as has found out with Dasia - and > experienced with Ian. > > Jodi Z > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Hi Jayne, First of all welcome! I haven't had the chance to be on much lately. I just want to give my opinion of what happened with Dasia. For as long as I can remember, we have had sporadic days where she will not eat. Or over a couple weeks her appetite would be significantly decreased. Last winter she got sick a lot, but nowhere near as sick for as long and steady as this year. I think all the days or weeks, over time, when she wasn't getting everything her body needed was a slow breakdown of her body, and now her immune system can't fight even a cold. The same thing happened with another little girl Autumn. They stay so sick so often that you'll do anything to make it stop. And you can get a child perfect nutrition with a tube. I just think these kids have enough of an uphill battle, and if we can provide perfect nutrition for them, I think they stand a much better chance. And, I think the anxiety of wondering if the lack of calories and nutrition is causing harm, is far worse than the inconveniences of tube feeding. I can rest now, knowing I've done everything I can to make sure she has the best chance. We understand that this is not an easy thing though! From the time of knowing she may one day need a tube was 4 months ago, and I had always been against it because those " good days " gave me a false perception that she would make up for the bad days and be fine. So it takes time to come to this decision. You will have all the support in the world here to get you through whatever you need! Just hang in there and trust your instincts! Mom to Dasia 23mo RSS can anyone enlighten me? at what point does a child have to be tube fed.? who would tell me? Lily hadnt ate for 2 weeks and is now eating again. she does this.when she is eating we think she doesnt need it and then when she doesnt eat we want her to have it. we dont know if she is managed badly because we dont know what her management would be if managed well, if you know what i mean.? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 - you couldn't have said it any better. Same thing happened with Ian. Thank you for this post - it was perfectly said. - H > > Hi Jayne, > First of all welcome! I haven't had the chance to be on much lately. I just want to give my opinion of what happened with Dasia. For as long as I can remember, we have had sporadic days where she will not eat. Or over a couple weeks her appetite would be significantly decreased. Last winter she got sick a lot, but nowhere near as sick for as long and steady as this year. I think all the days or weeks, over time, when she wasn't getting everything her body needed was a slow breakdown of her body, and now her immune system can't fight even a cold. The same thing happened with another little girl Autumn. They stay so sick so often that you'll do anything to make it stop. And you can get a child perfect nutrition with a tube. I just think these kids have enough of an uphill battle, and if we can provide perfect nutrition for them, I think they stand a much better chance. And, I think the anxiety of wondering if the lack of calories and nutrition is causing harm, is far worse than > the inconveniences of tube feeding. I can rest now, knowing I've done everything I can to make sure she has the best chance. We understand that this is not an easy thing though! From the time of knowing she may one day need a tube was 4 months ago, and I had always been against it because those " good days " gave me a false perception that she would make up for the bad days and be fine. So it takes time to come to this decision. > You will have all the support in the world here to get you through whatever you need! > Just hang in there and trust your instincts! > > Mom to Dasia > 23mo RSS > > > can anyone enlighten me? at what point does a child have to be tube > fed.? who would tell me? Lily hadnt ate for 2 weeks and is now eating > again. she does this.when she is eating we think she doesnt need it > and then when she doesnt eat we want her to have it. we dont know if > she is managed badly because we dont know what her management would be > if managed well, if you know what i mean.? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 I have to agree with 's post. My daughter Autumn (almost 2 yrs) got a g-tube nov 7 after a long battle and she just kept going downhill. She was ALWAYS sick, miserable, in the hospital, not eating, refusing to drink, had numerous iv's for fluids etc. We just couldn't help her. At 1 yr she was 15.5 lbs and was doing well for RSS and only 1 hospital stay with iv fluids for refusal to eat at 6 weeks when sick. The older she got the worse she got. When she was sick I would even try syringe feeding/drinking and she would scream and throw it up. Finally after almost a year on periactin and no help wiht weight gain, she was 16 lbs at 22 mos and very skinny because she had grown in lenght but not weight, and she was put in the hospital for refusal to eat/drink ANYTHING with another cold (she was hospitalized a couple of times in the previous months along with and ER visit..also, just a simple cold would take her down). I always seemed to wait just a little bit too long to take her in convinced she would drink something in a little while and I was convinced I just wasn't trying hard enough. Before her g-tube surgery she got very sick and days and days went by with no food or drink (she was on IV fluids in the hospital to help hydrate), so we gave her a ng tube and she began to get her strength back. It was amazing. 1.5 weeks later she got a g-tube and she is doing much better now. She will be 2 next week and is 17 lbs 14.5 oz after a full meal ( I like to weigh her after dinner, she is about 17 10 or so in the morning). She has lost a couple oz in past 2 weeks, I don't know why! but is still doing well. She is on her way up. I have to say that the first real sickness she has had since g-tube placement was last night when she got a fever (it's going around our household). She has had a little stuffy nose or something but nothing real until last night. Sure enough, she stopped eating and drinking and screamed no when she saw anything I was offering, she even screamed no to her tube feedings, but I of course did it anyways and now a day later instead of her being lethargic and in the hospital, she was up and playing some because I can keep her nourished. Also, it helps her appetite come back much faster when her nourishment is maintained at all times. Ironic, tube feedings make her feel better so she will eat on her own. I went back and forth with deciding to tube feed or not. On the days she would eat, it would seem like the bad times were gone and maybe they won't happen again. I also thought that if she was eating so well now, then when she stopped eating it must be something I was doing wrong, maybe not offering the right foods or something. Then the times when she would be sick and not eating, I would just cry and nothing I did would get her to eat, nothing, and most of the time she would reduce or totally stop drinking. Then I was convinced she needed a tube. Our family and friends would see her and jsut be so concerned because she was looking so bad. Then again, over time seh got better and I would think everything was fine becaseu again she was back to eating well and she will be ok, she doesnt need a tube, it just never stayed that way and overall, she got worse. It is a vicious cycle. By the time she was scheduled for a g-tube it becamse obvious she really needed one instead of choosing one and we couldn't wait that long so the ng was temporary until the surgery. I have to admit although the g-tube seems very strange at first it becomes the norm pretty quickly! the only thing I regret about the g- tube is not doing it earlier. I don't like medical intervention like that and I try to go around it, but sometimes it is what is best, and it was for Autumn. She only gets supplemental feedings when eating well, that is to help her gain weight. When she is sick or not eating, I do feeds to replace those lost calories to keep her maintained. Good luck. mom to Autumn RSS, Summer SGA, Ocean, Skye > > Hi Jayne, > First of all welcome! I haven't had the chance to be on much lately. I just want to give my opinion of what happened with Dasia. For as long as I can remember, we have had sporadic days where she will not eat. Or over a couple weeks her appetite would be significantly decreased. Last winter she got sick a lot, but nowhere near as sick for as long and steady as this year. I think all the days or weeks, over time, when she wasn't getting everything her body needed was a slow breakdown of her body, and now her immune system can't fight even a cold. The same thing happened with another little girl Autumn. They stay so sick so often that you'll do anything to make it stop. And you can get a child perfect nutrition with a tube. I just think these kids have enough of an uphill battle, and if we can provide perfect nutrition for them, I think they stand a much better chance. And, I think the anxiety of wondering if the lack of calories and nutrition is causing harm, is far worse than > the inconveniences of tube feeding. I can rest now, knowing I've done everything I can to make sure she has the best chance. We understand that this is not an easy thing though! From the time of knowing she may one day need a tube was 4 months ago, and I had always been against it because those " good days " gave me a false perception that she would make up for the bad days and be fine. So it takes time to come to this decision. > You will have all the support in the world here to get you through whatever you need! > Just hang in there and trust your instincts! > > Mom to Dasia > 23mo RSS > > > can anyone enlighten me? at what point does a child have to be tube > fed.? who would tell me? Lily hadnt ate for 2 weeks and is now eating > again. she does this.when she is eating we think she doesnt need it > and then when she doesnt eat we want her to have it. we dont know if > she is managed badly because we dont know what her management would be > if managed well, if you know what i mean.? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 I think that reading this and the other posts of people trying to decide like H, help those that can't decide! I am not in that boat yet and hopefully won't be as Noah does seem to be doing well with the Periactin. If I see any sniffles or anything coming with any one of my kids ... I act right away to keep Noah from getting too sick ... well I've been trying to anyway ... it's funny how we live and learn! I also think that it has helped me taking the Cold FX as I am usually one to get lots of colds and such too. Hard time not hugging and kissing my little ones when I'm sick ... lol. ... it was you who was in Florida with your Mom right? How's she doing? Dawna Matt 13, 11, 8 and Noah 3 RSS > > > > Hi Jayne, > > First of all welcome! I haven't had the chance to be on much > lately. I just want to give my opinion of what happened with Dasia. > For as long as I can remember, we have had sporadic days where she > will not eat. Or over a couple weeks her appetite would be > significantly decreased. Last winter she got sick a lot, but nowhere > near as sick for as long and steady as this year. I think all the > days or weeks, over time, when she wasn't getting everything her body > needed was a slow breakdown of her body, and now her immune system > can't fight even a cold. The same thing happened with another little > girl Autumn. They stay so sick so often that you'll do anything to > make it stop. And you can get a child perfect nutrition with a tube. > I just think these kids have enough of an uphill battle, and if we > can provide perfect nutrition for them, I think they stand a much > better chance. And, I think the anxiety of wondering if the lack of > calories and nutrition is causing harm, is far worse than > > the inconveniences of tube feeding. I can rest now, knowing I've > done everything I can to make sure she has the best chance. We > understand that this is not an easy thing though! From the time of > knowing she may one day need a tube was 4 months ago, and I had > always been against it because those " good days " gave me a false > perception that she would make up for the bad days and be fine. So it > takes time to come to this decision. > > You will have all the support in the world here to get you > through whatever you need! > > Just hang in there and trust your instincts! > > > > Mom to Dasia > > 23mo RSS > > > > > > can anyone enlighten me? at what point does a child have to be > tube > > fed.? who would tell me? Lily hadnt ate for 2 weeks and is now > eating > > again. she does this.when she is eating we think she doesnt need it > > and then when she doesnt eat we want her to have it. we dont know > if > > she is managed badly because we dont know what her management would > be > > if managed well, if you know what i mean.? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 and - I'm right there with you - with very similar circumstances with Ian - and I'm happier to know that things work out better in the end with the G-tube. Thanks for your posts - they were perfect. - H > > > > Hi Jayne, > > First of all welcome! I haven't had the chance to be on much > lately. I just want to give my opinion of what happened with Dasia. > For as long as I can remember, we have had sporadic days where she > will not eat. Or over a couple weeks her appetite would be > significantly decreased. Last winter she got sick a lot, but nowhere > near as sick for as long and steady as this year. I think all the > days or weeks, over time, when she wasn't getting everything her body > needed was a slow breakdown of her body, and now her immune system > can't fight even a cold. The same thing happened with another little > girl Autumn. They stay so sick so often that you'll do anything to > make it stop. And you can get a child perfect nutrition with a tube. > I just think these kids have enough of an uphill battle, and if we > can provide perfect nutrition for them, I think they stand a much > better chance. And, I think the anxiety of wondering if the lack of > calories and nutrition is causing harm, is far worse than > > the inconveniences of tube feeding. I can rest now, knowing I've > done everything I can to make sure she has the best chance. We > understand that this is not an easy thing though! From the time of > knowing she may one day need a tube was 4 months ago, and I had > always been against it because those " good days " gave me a false > perception that she would make up for the bad days and be fine. So it > takes time to come to this decision. > > You will have all the support in the world here to get you > through whatever you need! > > Just hang in there and trust your instincts! > > > > Mom to Dasia > > 23mo RSS > > > > > > can anyone enlighten me? at what point does a child have to be > tube > > fed.? who would tell me? Lily hadnt ate for 2 weeks and is now > eating > > again. she does this.when she is eating we think she doesnt need it > > and then when she doesnt eat we want her to have it. we dont know > if > > she is managed badly because we dont know what her management would > be > > if managed well, if you know what i mean.? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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