Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 What are the negative side affects? Weight gain, no appetite in the morning, and possibly affecting sleep. Chelsea gained too much weight when she had a significant portion of her cals at nite. Now i give her 2 small snacks, one at bedtime about 80cals, and one in the middle of the nite, about 60 cals. Since I blend her diet, I just feed her what she gets during the day, and it is a good balance of complex carbs, protein, and fats. When she has had sleep studies, the tech running them has pointed out to me that Chelsea's apnea increases and her O2 drops when she is fed. This is due to energy being diverted to the digestive system. I am not sure how much or a role phenobarb played in this, since she always had significant side effects from it. She has a sleep study coming up, so hopefully there is improvement now that she is off it. If Wyatt seems better on overnite feeds, I would give it a trial run. Just keep a close eye on his weight and O2 levels, if you have the means. I think Chels had more of a problem because she was so sedentary. Good luck with the EEG, I hope you get some answers=) e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 What are the negative side affects? Weight gain, no appetite in the morning, and possibly affecting sleep. Chelsea gained too much weight when she had a significant portion of her cals at nite. Now i give her 2 small snacks, one at bedtime about 80cals, and one in the middle of the nite, about 60 cals. Since I blend her diet, I just feed her what she gets during the day, and it is a good balance of complex carbs, protein, and fats. When she has had sleep studies, the tech running them has pointed out to me that Chelsea's apnea increases and her O2 drops when she is fed. This is due to energy being diverted to the digestive system. I am not sure how much or a role phenobarb played in this, since she always had significant side effects from it. She has a sleep study coming up, so hopefully there is improvement now that she is off it. If Wyatt seems better on overnite feeds, I would give it a trial run. Just keep a close eye on his weight and O2 levels, if you have the means. I think Chels had more of a problem because she was so sedentary. Good luck with the EEG, I hope you get some answers=) e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Wyatt was admitted to the hospital last night due to increased seizures and throwing up. Of course he has had no more seizures, nor has he thrown up since arriving- ugghhh! I'm sure you all get why I said the ughhhh, no need to explain to you guys. They are hooking him up to the EEG machine though to see if we can catch some seizures. He was scheduled to be admitted this week, we just ended up in a little early. Anyways my question is for those of you who run feeds at night. What are the negative side affects? I remember asking about doing night feeds and we were told no. However last night they ran an IV and a constant night feed and Wyatt had the best night of sleep EVER!!!! yes EVER- go figure in a hospital. So if there are no negative side affects I want to start running them at home. Any advice, ideas? Thanks Geri-Anne and Wyatt, Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Wyatt was admitted to the hospital last night due to increased seizures and throwing up. Of course he has had no more seizures, nor has he thrown up since arriving- ugghhh! I'm sure you all get why I said the ughhhh, no need to explain to you guys. They are hooking him up to the EEG machine though to see if we can catch some seizures. He was scheduled to be admitted this week, we just ended up in a little early. Anyways my question is for those of you who run feeds at night. What are the negative side affects? I remember asking about doing night feeds and we were told no. However last night they ran an IV and a constant night feed and Wyatt had the best night of sleep EVER!!!! yes EVER- go figure in a hospital. So if there are no negative side affects I want to start running them at home. Any advice, ideas? Thanks Geri-Anne and Wyatt, Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Hi Geri-Anne, my son has been overnight feeds via g-tube, for 7 years now, he has severe reflux-gerd, and seizure disorder, he is also monitored by pulse ox machine for o2 stats and heart rate because of seizures and sleeping disorder. I've always had overnight nursing for the overnight feeds, because #1 you dont want your child to reflux in thier sleep, they can asperate, our nurses need to keep Matt in Fowlers position which is him sleeping propped up on pillows, so his reflux is not so bad, as laying flat. #2 if your child has a seizure during overnight feed, they can asperate, pull over Iv pole and feeding, and hurting themselves, also can get tangled in tubing, expecially if sleep is restless. We have o2 right in his bedroom and also a suction machine incase of asperation. And the nursing is very important as a parent must be able to get sleep at night too. So if you can prove a seizure disorder, or severe reflux, or a sleeping disorder or even behavior disorder eg... autism or autistic tendencies, ocd, or odd, where the child might interfere with the feeding, your might be able to get overnight nursing so you can sleep with peace of mind. I dont want to scare you, some children do just fine with overnight feeds, but Matt is not one of those children, And although Matt has been potty- trained since age 5, alot of his medications knock him out so deep, that he is fully incontenant at night and the nurses change his diapers and keep him, clean and dry. They also give meds through out the night that he needs, and it is a great opportunity for extra hydration with every tube flush. If you cannot get overnight nursing, and your son does have reflux or seiure disorder you defenitly want a pulse ox machine during overnight feeds so it can alarm, and wake you up so you can help him if needed. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Hi Geri-Anne, my son has been overnight feeds via g-tube, for 7 years now, he has severe reflux-gerd, and seizure disorder, he is also monitored by pulse ox machine for o2 stats and heart rate because of seizures and sleeping disorder. I've always had overnight nursing for the overnight feeds, because #1 you dont want your child to reflux in thier sleep, they can asperate, our nurses need to keep Matt in Fowlers position which is him sleeping propped up on pillows, so his reflux is not so bad, as laying flat. #2 if your child has a seizure during overnight feed, they can asperate, pull over Iv pole and feeding, and hurting themselves, also can get tangled in tubing, expecially if sleep is restless. We have o2 right in his bedroom and also a suction machine incase of asperation. And the nursing is very important as a parent must be able to get sleep at night too. So if you can prove a seizure disorder, or severe reflux, or a sleeping disorder or even behavior disorder eg... autism or autistic tendencies, ocd, or odd, where the child might interfere with the feeding, your might be able to get overnight nursing so you can sleep with peace of mind. I dont want to scare you, some children do just fine with overnight feeds, but Matt is not one of those children, And although Matt has been potty- trained since age 5, alot of his medications knock him out so deep, that he is fully incontenant at night and the nurses change his diapers and keep him, clean and dry. They also give meds through out the night that he needs, and it is a great opportunity for extra hydration with every tube flush. If you cannot get overnight nursing, and your son does have reflux or seiure disorder you defenitly want a pulse ox machine during overnight feeds so it can alarm, and wake you up so you can help him if needed. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Sorry to hear Wyatt isn't doing well and want you to know I totally understand the " terrible at home, but great once in the hospital " issues. Asthma is one of those issues we often encounter as the cool air on the way to the hospital often " temporarily " fixes their wheezing, until we leave again for home at least. We use overnight feeds and haven't had any negative side effects that I have noticed. Both Asenath and Zipporrah get at least 2 cans of pediasure through the nighttime. It would be very hard for Zipporrah in particular to get all her needed nutrition during the daytime alone, and we have found for our girls it is better to not allow them to fast, so night feeds have been done for them since we first had g-tubes placed. Hope you will be able to make the right decision for your son. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) overnight feeds > > > Wyatt was admitted to the hospital last night due to increased > seizures and throwing up. Of course he has had no more seizures, nor > has he thrown up since arriving- ugghhh! I'm sure you all get why I > said the ughhhh, no need to explain to you guys. They are hooking > him up to the EEG machine though to see if we can catch some > seizures. He was scheduled to be admitted this week, we just ended > up in a little early. Anyways my question is for those of you who > run feeds at night. What are the negative side affects? I remember > asking about doing night feeds and we were told no. However last > night they ran an IV and a constant night feed and Wyatt had the best > night of sleep EVER!!!! yes EVER- go figure in a hospital. So if > there are no negative side affects I want to start running them at > home. Any advice, ideas? > > Thanks > > Geri-Anne and Wyatt, Complex I > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Sorry to hear Wyatt isn't doing well and want you to know I totally understand the " terrible at home, but great once in the hospital " issues. Asthma is one of those issues we often encounter as the cool air on the way to the hospital often " temporarily " fixes their wheezing, until we leave again for home at least. We use overnight feeds and haven't had any negative side effects that I have noticed. Both Asenath and Zipporrah get at least 2 cans of pediasure through the nighttime. It would be very hard for Zipporrah in particular to get all her needed nutrition during the daytime alone, and we have found for our girls it is better to not allow them to fast, so night feeds have been done for them since we first had g-tubes placed. Hope you will be able to make the right decision for your son. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) overnight feeds > > > Wyatt was admitted to the hospital last night due to increased > seizures and throwing up. Of course he has had no more seizures, nor > has he thrown up since arriving- ugghhh! I'm sure you all get why I > said the ughhhh, no need to explain to you guys. They are hooking > him up to the EEG machine though to see if we can catch some > seizures. He was scheduled to be admitted this week, we just ended > up in a little early. Anyways my question is for those of you who > run feeds at night. What are the negative side affects? I remember > asking about doing night feeds and we were told no. However last > night they ran an IV and a constant night feed and Wyatt had the best > night of sleep EVER!!!! yes EVER- go figure in a hospital. So if > there are no negative side affects I want to start running them at > home. Any advice, ideas? > > Thanks > > Geri-Anne and Wyatt, Complex I > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 We had been considering starting Grace on night feeds to help with her hypoglycemia, but decided not too because the risk of potential side affects. Her GI told us that it is very possible for her to get "full" during the night and her daytime appetite would decrease. Since we only use her g tube for fluids (when ill) and medication we did not want to run the risk of her needing the feedings during the day since she does eat great during the day. (O.K sometimes with the help of appetite stimulants, but it is still eating.) For her we have still not found any great alternitive to get her to sleep through the night. At least she is pretty easy and wakes to get a drink of milk or something then goes right back too sleep. I have a 4 month old too, who doesen't sleep through the night yet anyways, so there is no chance of me sleeping anyways. Best wishes Do you know all the things you can do with a Hotmail account? Click here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 We had been considering starting Grace on night feeds to help with her hypoglycemia, but decided not too because the risk of potential side affects. Her GI told us that it is very possible for her to get "full" during the night and her daytime appetite would decrease. Since we only use her g tube for fluids (when ill) and medication we did not want to run the risk of her needing the feedings during the day since she does eat great during the day. (O.K sometimes with the help of appetite stimulants, but it is still eating.) For her we have still not found any great alternitive to get her to sleep through the night. At least she is pretty easy and wakes to get a drink of milk or something then goes right back too sleep. I have a 4 month old too, who doesen't sleep through the night yet anyways, so there is no chance of me sleeping anyways. Best wishes Do you know all the things you can do with a Hotmail account? Click here! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.