Guest guest Posted August 6, 2007 Report Share Posted August 6, 2007 Some of this is going to be learned behavior. If eating made you feel awful, you wouldn't like it either and would learn to avoid it.Also, if you have an ng tube, it's not the most comfortable thing in the world and it makes it harder to swallow. She is going to have more trouble as she does grow with her heart as she just naturally will be doing more and using more energy to do it.Am I confused, or wasn't it you who was just at the hospital with her and were able to watch her heart rate go up with eating?Good thing to be looking for a good SLP and or a feeding therapist, but I wouldn't work too hard at this til after the repair. I am very proactive and pushy, but honestly, by the time they get done with her at the hospital, you are just going to be starting over at square one.I could be wrong... I hope others can chime in, but you will find that post repair, things like this are going to be SO MUCH easier to fix. You also should factor in the risk of exposing her to more germs and viral infections pre-op. A UTI set her back, so I am thinking a nasty bug would do the same. It's really hard to get a ahead of things pre-op. Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----From: Kris Delaney <kdelaney@...>Down Syndrome Treatment Sent: Monday, August 6, 2007 12:06:11 PMSubject: food aversion I wanted to report that my daughter is doing better (Caroline had posted a message about our recent hospitalization) . has a UTI. She is vomiting daily now, which I suspect is from the medication. We'll see if it goes away in 8 days (the number of days left with the prescription) . Otherwise, I suspect reflux. My question: has gradually, since mid-July, developed an aversion to the bottle and breast, to the point where now she will take almost nothing. She takes almost all of her feedings thru the ng tube. I can occasionally get 1/2 oz in her with the bottle, but she sort of chews on the nipple rather than good sucking. is 5 mo old, and prior to mid-July, she had no feeding difficulties with the bottle (other than she wasn't gaining due to her heart condition). She is scheduled for a VSD repair on Sept. 4th. Some of this feeding issue may be related to the heart, but I strongly doubt that all of it is. She will not even try, and just cries when I attempt to feed her.....she does not get tired out. Has anyone dealt with this issue? Did you overcome it? I am in the process of looking for a good speech therapist. Thank you for any help! Kris Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2007 Report Share Posted August 6, 2007 Thank you Carol. Yes, that was me. That was our FIRST hospital visit in two weeks that you are referring to. Yes, at that point, was still taking the bottle in a limited amount. She would eat, but tired out after awhile (15 min). At that point I thought it was simply the heart. It was at that hospital visit that we started the ng tube. Fast forward another week. has taken less and less to the point of zero with the bottle. She was hospitalized for high fever and vomiting (UTI). Since that visit, she will not attempt to eat. SO this started out gradual, but is now worse. She cannot possibly tire out in 30 seconds at the bottle. Her heart rate and breathing remain unchanged unless she feeds for 10 minutes or so, which she has not done. I sure hope you're right about post-op being easier. Eating is a pretty important thing I'm trying not to panic.....but I'm already weight the options of a g-tube done at the same time as the heart. I'd hate to go back two weeks later for that. Of course we'll give everything a very good try! Thank you, Kris Some of this is going to be learned behavior. If eating made you feel awful, you wouldn't like it either and would learn to avoid it.Also, if you have an ng tube, it's not the most comfortable thing in the world and it makes it harder to swallow. She is going to have more trouble as she does grow with her heart as she just naturally will be doing more and using more energy to do it.Am I confused, or wasn't it you who was just at the hospital with her and were able to watch her heart rate go up with eating?Good thing to be looking for a good SLP and or a feeding therapist, but I wouldn't work too hard at this til after the repair. I am very proactive and pushy, but honestly, by the time they get done with her at the hospital, you are just going to be starting over at square one.I could be wrong... I hope others can chime in, but you will find that post repair, things like this are going to be SO MUCH easier to fix. You also should factor in the risk of exposing her to more germs and viral infections pre-op. A UTI set her back, so I am thinking a nasty bug would do the same. It's really hard to get a ahead of things pre-op. Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic food aversion I wanted to report that my daughter is doing better (Caroline had posted a message about our recent hospitalization) . has a UTI. She is vomiting daily now, which I suspect is from the medication. We'll see if it goes away in 8 days (the number of days left with the prescription) . Otherwise, I suspect reflux. My question: has gradually, since mid-July, developed an aversion to the bottle and breast, to the point where now she will take almost nothing. She takes almost all of her feedings thru the ng tube. I can occasionally get 1/2 oz in her with the bottle, but she sort of chews on the nipple rather than good sucking. is 5 mo old, and prior to mid-July, she had no feeding difficulties with the bottle (other than she wasn't gaining due to her heart condition). She is scheduled for a VSD repair on Sept. 4th. Some of this feeding issue may be related to the heart, but I strongly doubt that all of it is. She will not even try, and just cries when I attempt to feed her.....she does not get tired out. Has anyone dealt with this issue? Did you overcome it? I am in the process of looking for a good speech therapist. Thank you for any help! Kris Moody friends. Drama queens. Your life? Nope! - their life, your story.Play Sims Stories at Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2007 Report Share Posted August 6, 2007 Unless they have changed the protocol, they won’t do a g-tube at he same time as the heart repair due to the risk of getting GI bacteria in the bloodstream, which could lead to an endocarditis (but that was 9 yrs ago when we were told that…may have changed by now) Before Danny’s repair for his AV canal,(at 8.5 months) he had gotten to the point where he would only take 20 cc’s at a feeding..we fed him every hour around the clock. He vomited 4 or more times a day. He would cry and vomit if he literally even SAW a spoon…we tried to get him to take food by dipping plastic toys in his food, because he would not even let a spoon near his mouth. The speech therapists here were stumped. We arranged for a speech therapist at the Children’s Hospital to see Danny after his repair, and as soon as he could eat again, he took his formula well and wanted more…when he got to the point where he was allowed strained foods again, the therapist came up w/a jar of baby food to try to feed him. He ate the whole thing and cried for more;-) He had never eaten so well in his life. For him, the surgery was definitely a turning point…finally had an appetite..he still got sweaty when he ate for a few months, but he didn’t tire out, and he did not vomit. Kathy(mom to Danny, 9 yr old and his 6 older sibs) From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Kris Delaney Sent: Monday, August 06, 2007 6:15 PM Down Syndrome Treatment Subject: Re: food aversion Thank you Carol. Yes, that was me. That was our FIRST hospital visit in two weeks that you are referring to. Yes, at that point, was still taking the bottle in a limited amount. She would eat, but tired out after awhile (15 min). At that point I thought it was simply the heart. It was at that hospital visit that we started the ng tube. Fast forward another week. has taken less and less to the point of zero with the bottle. She was hospitalized for high fever and vomiting (UTI). Since that visit, she will not attempt to eat. SO this started out gradual, but is now worse. She cannot possibly tire out in 30 seconds at the bottle. Her heart rate and breathing remain unchanged unless she feeds for 10 minutes or so, which she has not done. I sure hope you're right about post-op being easier. Eating is a pretty important thing I'm trying not to panic.....but I'm already weight the options of a g-tube done at the same time as the heart. I'd hate to go back two weeks later for that. Of course we'll give everything a very good try! Thank you, Kris Some of this is going to be learned behavior. If eating made you feel awful, you wouldn't like it either and would learn to avoid it. Also, if you have an ng tube, it's not the most comfortable thing in the world and it makes it harder to swallow. She is going to have more trouble as she does grow with her heart as she just naturally will be doing more and using more energy to do it. Am I confused, or wasn't it you who was just at the hospital with her and were able to watch her heart rate go up with eating? Good thing to be looking for a good SLP and or a feeding therapist, but I wouldn't work too hard at this til after the repair. I am very proactive and pushy, but honestly, by the time they get done with her at the hospital, you are just going to be starting over at square one. I could be wrong... I hope others can chime in, but you will find that post repair, things like this are going to be SO MUCH easier to fix. You also should factor in the risk of exposing her to more germs and viral infections pre-op. A UTI set her back, so I am thinking a nasty bug would do the same. It's really hard to get a ahead of things pre-op. Carol in IL AIM doihavtasay1 Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS. My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic food aversion I wanted to report that my daughter is doing better (Caroline had posted a message about our recent hospitalization) . has a UTI. She is vomiting daily now, which I suspect is from the medication. We'll see if it goes away in 8 days (the number of days left with the prescription) . Otherwise, I suspect reflux. My question: has gradually, since mid-July, developed an aversion to the bottle and breast, to the point where now she will take almost nothing. She takes almost all of her feedings thru the ng tube. I can occasionally get 1/2 oz in her with the bottle, but she sort of chews on the nipple rather than good sucking. is 5 mo old, and prior to mid-July, she had no feeding difficulties with the bottle (other than she wasn't gaining due to her heart condition). She is scheduled for a VSD repair on Sept. 4th. Some of this feeding issue may be related to the heart, but I strongly doubt that all of it is. She will not even try, and just cries when I attempt to feed her.....she does not get tired out. Has anyone dealt with this issue? Did you overcome it? I am in the process of looking for a good speech therapist. Thank you for any help! Kris Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2007 Report Share Posted August 6, 2007 Thank you, Kathy. Wow, it is amazing how the heart troubles can make our little ones not want to eat. You'd think they'd feel so hungry with all the calories they're burning. Like Danny, I would also say that very rarely seems hungry. She too will often cry if she sees the bottle or breast. I had to smile about the part about dipping Danny's toys in food I can completely relate to that desperate feeling of wanting to feed your child. I'm so glad he did so well nine years ago! And I'll bet you're right about the g-tube surgery. I'm sure they would not want to do that. And we would not want to do it without a very big effort on our part of getting to eat. But I also don't like the idea of being sent home with these eating struggles....we will assess that all in the weeks following surgery. Thanks so much for your help and information, it gives me encouragement! Kris food aversion I wanted to report that my daughter is doing better (Caroline had posted a message about our recent hospitalization) . has a UTI. She is vomiting daily now, which I suspect is from the medication. We'll see if it goes away in 8 days (the number of days left with the prescription) . Otherwise, I suspect reflux. My question: has gradually, since mid-July, developed an aversion to the bottle and breast, to the point where now she will take almost nothing. She takes almost all of her feedings thru the ng tube. I can occasionally get 1/2 oz in her with the bottle, but she sort of chews on the nipple rather than good sucking. is 5 mo old, and prior to mid-July, she had no feeding difficulties with the bottle (other than she wasn't gaining due to her heart condition). She is scheduled for a VSD repair on Sept. 4th. Some of this feeding issue may be related to the heart, but I strongly doubt that all of it is. She will not even try, and just cries when I attempt to feed her.....she does not get tired out. Has anyone dealt with this issue? Did you overcome it? I am in the process of looking for a good speech therapist. Thank you for any help! Kris Moody friends. Drama queens. Your life? Nope! - their life, your story.Play Sims Stories at Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 Kathy, Do you think there is a link between heart and feeding? My son is 3.5 almost 4 and has a (their words) very small VSD and ASD - valve not closed all the way. I guess its small and hard to hear but I have seen other emails regarding repairs and better feeding and wondered what you thought about it. Thanks B --- Kathy Ratkiewicz <Kathy_R@...> wrote: > Unless they have changed the protocol, they won't do > a g-tube at he same > time as the heart repair due to the risk of getting > GI bacteria in the > bloodstream, which could lead to an endocarditis > (but that was 9 yrs ago > when we were told that.may have changed by now) > > Before Danny's repair for his AV canal,(at 8.5 > months) he had gotten to the > point where he would only take 20 cc's at a > feeding..we fed him every hour > around the clock. He vomited 4 or more times a day. > He would cry and vomit > if he literally even SAW a spoon.we tried to get him > to take food by dipping > plastic toys in his food, because he would not even > let a spoon near his > mouth. The speech therapists here were stumped. We > arranged for a speech > therapist at the Children's Hospital to see Danny > after his repair, and as > soon as he could eat again, he took his formula well > and wanted more.when he > got to the point where he was allowed strained foods > again, the therapist > came up w/a jar of baby food to try to feed him. He > ate the whole thing and > cried for more;-) He had never eaten so well in his > life. For him, the > surgery was definitely a turning point.finally had > an appetite..he still got > sweaty when he ate for a few months, but he didn't > tire out, and he did not > vomit. > > Kathy(mom to Danny, 9 yr old and his 6 older sibs) > > > > From: Down Syndrome Treatment > [mailto:Down Syndrome Treatment ] On > Behalf Of Kris Delaney > Sent: Monday, August 06, 2007 6:15 PM > Down Syndrome Treatment > Subject: Re: food > aversion > > > > Thank you Carol. Yes, that was me. That was our > FIRST hospital visit in > two weeks that you are referring to. Yes, at that > point, was still > taking the bottle in a limited amount. She would > eat, but tired out after > awhile (15 min). At that point I thought it was > simply the heart. It was > at that hospital visit that we started the ng tube. > Fast forward another > week. has taken less and less to the point of > zero with the bottle. > She was hospitalized for high fever and vomiting > (UTI). Since that visit, > she will not attempt to eat. SO this started out > gradual, but is now worse. > She cannot possibly tire out in 30 seconds at the > bottle. Her heart rate > and breathing remain unchanged unless she feeds for > 10 minutes or so, which > she has not done. > > > > I sure hope you're right about post-op being easier. > Eating is a pretty > important thing I'm trying not to panic.....but > I'm already weight the > options of a g-tube done at the same time as the > heart. I'd hate to go back > two weeks later for that. Of course we'll give > everything a very good try! > > > > Thank you, > > Kris > > > > Some of this is going to be learned behavior. If > eating made you feel awful, > you wouldn't like it either and would learn to avoid > it. > Also, if you have an ng tube, it's not the most > comfortable thing in the > world and it makes it harder to swallow. > She is going to have more trouble as she does grow > with her heart as she > just naturally will be doing more and using more > energy to do it. > > Am I confused, or wasn't it you who was just at the > hospital with her and > were able to watch her heart rate go up with eating? > > Good thing to be looking for a good SLP and or a > feeding therapist, but I > wouldn't work too hard at this til after the repair. > I am very proactive and > pushy, but honestly, by the time they get done with > her at the hospital, you > are just going to be starting over at square one. > > I could be wrong... I hope others can chime in, but > you will find that post > repair, things like this are going to be SO MUCH > easier to fix. You also > should factor in the risk of exposing her to more > germs and viral infections > pre-op. A UTI set her back, so I am thinking a nasty > bug would do the same. > It's really hard to get a ahead of things pre-op. > > > > > > Carol in IL AIM doihavtasay1 > Mom to seven including , 6 with TOF, > AVcanal, GERD, LS, Asthma, > subglottal stenosis, and DS. > > My problem is not how I look. It's how you see me. > > > > > > Join our Down Syndrome information group - > > Down Syndrome Treatment/ > > > > Listen to oldest dd's music > http://www.myspace.com/vennamusic > > > > food aversion > > I wanted to report that my daughter is doing > better (Caroline had > posted a message about our recent hospitalization) . > has a UTI. She > is vomiting daily now, which I suspect is from the > medication. We'll see if > it goes away in 8 days (the number of days left with > the prescription) . > Otherwise, I suspect reflux. > > > > My question: has gradually, since mid-July, > developed an aversion to > the bottle and breast, to the point where now she > will take almost nothing. > She takes almost all of her feedings thru the ng > tube. I can occasionally > get 1/2 oz in her with the bottle, but she sort of > chews on the nipple > rather than good sucking. is 5 mo old, and > prior to mid-July, she had > no feeding difficulties with the bottle (other than > she wasn't gaining due > to her heart condition). She is scheduled for a VSD > repair on Sept. 4th. > Some of this feeding issue may be related to the > heart, but I strongly doubt > that all of it is. She will not even try, and just > cries when I attempt to > feed her.....she does not get tired out. Has anyone > dealt with this issue? > Did you overcome it? I am in the process of looking > for a good speech > therapist. > > > > Thank you for any help! > > > > Kris > > === message truncated === ________________________________________________________________________________\ ____ Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. http://answers./dir/?link=list & sid=396545469 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2007 Report Share Posted August 11, 2007 Thank you all who gave me suggestions for 's food aversion. She is back to at least taking the bottle without crying. She'll take up to 1 oz per feeding, which is encouraging given the fact that she was at zero a week ago! I'm hoping we can at least keep her trying for three more weeks, then after the surgery, we'll see what we still need to work on. I'm sure I'll be buggin' you all again then! In the meantime, hopefully we'll find a good therapist for . Have a great weekend, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2007 Report Share Posted August 11, 2007 I just remembered something else…when Danny was going through his aversion stage, he had a couple of strange things that he did in order to eat….first of all, he went through a period where he would ONLY take his bottle if I held him facing me so that I could maintain eye contact w/him..AND I had to sing, “Tell Me Why” over and over and over. Had to be that song, and we had to have eye contact, otherwise, he wouldn’t eat. Then he went through a phase where he could only take his bottle if he was ‘sleeping’. As soon as I put the nipple in his mouth, even though he was wide awake, he would close his eyes and appear to be deeply asleep while he sucked on the nipple…the nurse at the Ds clinic said that she had seen other kids w/Ds do the exact same thing…something about the feeding being so stressful for the baby that s/he would ‘protect’ her/himself by kind of ‘zoning out’…she called it ‘twilight feeding’. After his surgery, that all went away immediately. Weird, but true. Kathy From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Kris Delaney Sent: Saturday, August 11, 2007 6:57 AM Down Syndrome Treatment Subject: Re: food aversion Thank you all who gave me suggestions for 's food aversion. She is back to at least taking the bottle without crying. She'll take up to 1 oz per feeding, which is encouraging given the fact that she was at zero a week ago! I'm hoping we can at least keep her trying for three more weeks, then after the surgery, we'll see what we still need to work on. I'm sure I'll be buggin' you all again then! In the meantime, hopefully we'll find a good therapist for . Have a great weekend, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 Kathy, Oh my goodness!!!! You have described my child exactly. I've been telling everyone that every oz my dd has on her body has come about thru my (horrible, I may add) singing! I sing the food into her. We sing twinkle twinkle, ba ba blacksheep, and two or three Irish songs that my husband sings all the time (one is a pub song, poor child). My children sing the same hymn (from church) that she responds to amazingly well (even at church I might add). She's definitely in-tune with music. And sleep...yes, she absolutely eats best, and sometimes only, when she is in that half asleep mode. I thought this was just her. Now she has the ng tube so her weight is coming up, but we still attempt the bottle at every feeding. She's up to 1/2 to 1 oz with the bottle. I'm so encouraged to think that this all went away for Danny after surgery. I'm praying for the same thing here! Kris RE: food aversion I just remembered something else…when Danny was going through his aversion stage, he had a couple of strange things that he did in order to eat….first of all, he went through a period where he would ONLY take his bottle if I held him facing me so that I could maintain eye contact w/him..AND I had to sing, “Tell Me Why” over and over and over. Had to be that song, and we had to have eye contact, otherwise, he wouldn’t eat. Then he went through a phase where he could only take his bottle if he was ‘sleeping’. As soon as I put the nipple in his mouth, even though he was wide awake, he would close his eyes and appear to be deeply asleep while he sucked on the nipple…the nurse at the Ds clinic said that she had seen other kids w/Ds do the exact same thing…something about the feeding being so stressful for the baby that s/he would ‘protect’ her/himself by kind of ‘zoning out’…she called it ‘twilight feeding’. After his surgery, that all went away immediately. Weird, but true. Kathy From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Kris DelaneySent: Saturday, August 11, 2007 6:57 AMDown Syndrome Treatment Subject: Re: food aversion Thank you all who gave me suggestions for 's food aversion. She is backto at least taking the bottle without crying. She'll take up to 1 oz perfeeding, which is encouraging given the fact that she was at zero a weekago! I'm hoping we can at least keep her trying for three more weeks, thenafter the surgery, we'll see what we still need to work on. I'm sure I'llbe buggin' you all again then! In the meantime, hopefully we'll find a goodtherapist for .Have a great weekend,Kris Quote Link to comment Share on other sites More sharing options...
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