Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 went to see his genetic counselar today he said is doing well but not doing well at the same time. He is concerened about his weight and height{19 pounds 3 ounces~29 1/2 inches long} pediatric surgery took his mic-key button out in april he is following his own curve but its not up where the doctor would like it we do have someone coming in to work with us and i am following all her suggestions he doesnt seem to be gaining weight like he should i have to take him to see a nutrition specialist if she feels there is nothing more i can do myself to give him calories he will need his feeding tube back to have all night feeds he is currently taking 24 calorie formula and stage 2 baby food heres a list of what ive been doing to help him 1}24 calorie formula {except bedtime 30 cal} 2}adding corn oil to his bottles 3}adding butter to everthing that will take it 4}adding formula powder to all his food if anyone has any suggestions they would help alot i feel bad but the doctor told me its nothing i did wrong that weight issues are part of charge which i understand i even keep charts for his solid food intake and his formula intake im out of ideas thank you mommy to {16 month old CHARGEr} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 , I can email you some very high calorie recipes (baby food) that our GI doctor gave us and Eva like them. Have they talked about giving him Pediasure? Its much higher in calorie and sometimes insurance will pay for it if the doctor writes a script for it. From what I read he needs more calories a day, Eva gets 4 bottle of pediasure a day which is 237 calories per bottle. We also do 3 meals a day (2nds or 3rd) and I always look for the highest calorie. We also had a tbsp of butter to each meal and one of them is a high calorie recipe meal. Eva is 21 months old and is the same size as so dont stress to much. Our GI is just happy if she gains wait and stays on her curve line. Good luck hun and dont stress to much, Crystal and Eva > > went to see his genetic counselar today he said is > doing well but not doing well at the same time. He is concerened > about his weight and height{19 pounds 3 ounces~29 1/2 inches long} > pediatric surgery took his mic-key button out in april he is > following his own curve but its not up where the doctor would like it > we do have someone coming in to work with us and i am following all > her suggestions he doesnt seem to be gaining weight like he should i > have to take him to see a nutrition specialist if she feels there is > nothing more i can do myself to give him calories he will need his > feeding tube back to have all night feeds he is currently taking 24 > calorie formula and stage 2 baby food heres a list of what ive been > doing to help him > > 1}24 calorie formula {except bedtime 30 cal} > 2}adding corn oil to his bottles > 3}adding butter to everthing that will take it > 4}adding formula powder to all his food > > if anyone has any suggestions they would help alot i feel bad but the > doctor told me its nothing i did wrong that weight issues are part of > charge which i understand i even keep charts for his solid food > intake and his formula intake im out of ideas thank you > > mommy to {16 month old CHARGEr} > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 : has been oral since she turned 9 years old. The nutritionist was concerned that she wasn't getting enough protein, though. had been drinking 4 cans of Pediasure a day. But that always filled her up too much, then she didn't eat the regular foods as well. The nutritionist said Boost with protein was a good supplement. It gave her the added protein due to not eating many meats or other proteins, and it also is more " dense " in calories, so she only had to drink 2 can daily. And the cans volume is less than Pediasure, leaving plenty of room for the foods did eat. I don't know if this is a good option for individuals who might have lactose problems, though. I don't know if there is a specific age that should be before trying this. Might ask your nutritionist about it. The volume issue really made a huge difference for . Other ideas are finding things that are not reduced fat. It gets harder and harder to find some of the things likes that aren't reduced or low fat now. Puddings are one (she takes the pre-packaged Hunt's or Kraft to the dorm for snacking). Ice cream is another - look for real ice cream, not ice milk or reduced fat ice cream. We also made milkshakes with ice cream, Boost (not a lot because it changes the taste, but in place of milk) and grape or orange juice. You can use whole milk to pump up calories. Rick's mom always used skim milk and reduced fat butter to make mashed potatoes. We would use whole milk and real butter: LOVES mashed potatoes!!! The nutritionist recommended using the Boost to make puddings at home, but I could never get the ratio correct to get it to set up correctly - always really, really runny. I'll see if I can find some of the other suggestions she made. What types of foods does like to eat? I do know it was suggested to put gravy on everything that she would accept it on! Fortunately, maintains fairly well now in her caloric intake, so I don't push and pump the calories in now. But I still don't get the reduced fat items in anything that is for her alone. God knows the rest of the family doesn't need the fat!!! Friends in CHARGE, Marilyn Ogan Mom of (14 yrs, CHARGE+ JRA) Mom of Ken (17 yrs, Asperger's) Wife of Rick oganm@... _____ > > went to see his genetic counselar today he said is > doing well but not doing well at the same time. He is concerened > about his weight and height{19 pounds 3 ounces~29 1/2 inches long} > pediatric surgery took his mic-key button out in april he is > following his own curve but its not up where the doctor would like it > we do have someone coming in to work with us and i am following all > her suggestions he doesnt seem to be gaining weight like he should i > have to take him to see a nutrition specialist if she feels there is > nothing more i can do myself to give him calories he will need his > feeding tube back to have all night feeds he is currently taking 24 > calorie formula and stage 2 baby food heres a list of what ive been > doing to help him > > 1}24 calorie formula {except bedtime 30 cal} > 2}adding corn oil to his bottles > 3}adding butter to everthing that will take it > 4}adding formula powder to all his food > > if anyone has any suggestions they would help alot i feel bad but the > doctor told me its nothing i did wrong that weight issues are part of > charge which i understand i even keep charts for his solid food > intake and his formula intake im out of ideas thank you > > mommy to {16 month old CHARGEr} > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 - I'm out of town and can't check to be sure, but I don't think Aubrie weighed that much at 's age. She was tube fed a high-calorie formula and then switched to Pediasure for a while. Now she drinks whole milk and regular food. She is barely 52 lbs at nearly 10 yrs old. There's no way anyone can convince me that calories have anything to do with her slow growth. Nor does she have a heart condition that can be blamed. We've discussed this in the past on the list. I think there are some unexplained reasons that our kids have growth issues. So if is getting enough calories orally, I don't see how going back to a tube would help. I mean, how many calories can you pump in to him?? In our experience (keep in mind this is when Aubrie was less than a year old), adding too much to the tube feedings by increasing rate and/or volume and/or caloric content wasn't feasible. She'd vomit if we tried to give her too much. I don't know what I would do in your shoes. Continue to work with the nutrionist and try options, but I'd give it some thought and follow your instincts. Michele W Aubrie's mom 9 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 dear nicole, i so totally agree with michele's post about aubrie. chrystine weighs 15 lbs. and about 7 oz., almost 15 months old. i have her on a strict caloric intake (30/oz.) + she has started accepting a spoon feeding of some rice cereal made with water... she'll try other things. not enough to sustain herself, so that's the reason she still needs her tube. back when i first joined this list, michele told me that science isn't perfect... there are miracles of organ transplants but no one can seem to explain why despite how many calories we try to force into our children, they do not grow at a " normal " rate. i know the geneticist has nathan's best interests in mind, but if he is orally taking his needed caloric amount, that is sooooo great. what would she suggest with his feeding tube? more push overnight? then you face a decrease in his daily appetite! i go through this every time it is time to try and increase chrystine's overnight volume, she'll have just gotten comfortable with her intake and be showing interest in her food during the day and then i increase the overnight, even by 1 ml/hr! and her appetite is gone again. i probably haven't offered much advice, only empathy... chrystal arleigh-4 chrystine-almost 15 mos.-CHaRGE silas-almost 4 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 HI , We are going through that now with our daughter. If you yogurt, use LaCreme....highest fat content. Whole milk for everything. If it doesn't take butter, how about some shredded cheese? We add Duocal to 's nutritian drink. We get it through a medical supply company. It's a calorie booster. YOu may want to ask your doctor about it. Colleen > > went to see his genetic counselar today he said is > doing well but not doing well at the same time. He is concerened > about his weight and height{19 pounds 3 ounces~29 1/2 inches long} > pediatric surgery took his mic-key button out in april he is > following his own curve but its not up where the doctor would like it > we do have someone coming in to work with us and i am following all > her suggestions he doesnt seem to be gaining weight like he should i > have to take him to see a nutrition specialist if she feels there is > nothing more i can do myself to give him calories he will need his > feeding tube back to have all night feeds he is currently taking 24 > calorie formula and stage 2 baby food heres a list of what ive been > doing to help him > > 1}24 calorie formula {except bedtime 30 cal} > 2}adding corn oil to his bottles > 3}adding butter to everthing that will take it > 4}adding formula powder to all his food > > if anyone has any suggestions they would help alot i feel bad but the > doctor told me its nothing i did wrong that weight issues are part of > charge which i understand i even keep charts for his solid food > intake and his formula intake im out of ideas thank you > > mommy to {16 month old CHARGEr} > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 I agree. I assume the geneticist is aware that 3rd - 5th percentile is often a " normal " curve for CHARGE. Do you have the CHARGE manual. I am pretty sure that is where I saw that figure. Kim Certified HANDLE Screener and Intern Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18 and wife to Roy who makes all things possible in our lives. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 when i did my post yesterday i forgot to include that nathan is allergic to milk and get sick when he has anything containing milk but you all have very good ideas and i will mention them when he goes to see the specialist mommy to {16 month old CHARGEr} Re: Please Help HI , We are going through that now with our daughter. If you yogurt, use LaCreme....highest fat content. Whole milk for everything. If it doesn't take butter, how about some shredded cheese? We add Duocal to 's nutritian drink. We get it through a medical supply company. It's a calorie booster. YOu may want to ask your doctor about it. Colleen > > went to see his genetic counselar today he said is > doing well but not doing well at the same time. He is concerened > about his weight and height{19 pounds 3 ounces~29 1/2 inches long} > pediatric surgery took his mic-key button out in april he is > following his own curve but its not up where the doctor would like it > we do have someone coming in to work with us and i am following all > her suggestions he doesnt seem to be gaining weight like he should i > have to take him to see a nutrition specialist if she feels there is > nothing more i can do myself to give him calories he will need his > feeding tube back to have all night feeds he is currently taking 24 > calorie formula and stage 2 baby food heres a list of what ive been > doing to help him > > 1}24 calorie formula {except bedtime 30 cal} > 2}adding corn oil to his bottles > 3}adding butter to everthing that will take it > 4}adding formula powder to all his food > > if anyone has any suggestions they would help alot i feel bad but the > doctor told me its nothing i did wrong that weight issues are part of > charge which i understand i even keep charts for his solid food > intake and his formula intake im out of ideas thank you > > mommy to {16 month old CHARGEr} > ________________________________________________________________________________\ ____ Food fight? Enjoy some healthy debate in the Yahoo! Answers Food & Drink Q & A. http://answers.yahoo.com/dir/?link=list & sid=396545367 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 my son heath is going through the same thing as it is very hard to keep weight on him he has little or no appitite and is very hard to get to eat let alone as much as the doctor wants him to he also has digestive problems and he does not digest his food fully which in turn he does not get the nutrence he needs heath weighs 70 lbs this week 2 weeks ago he weighed 65 lbs and 2 weeks before that he was at 74 lbs i would also love to get help to regulate his weight and such my poor baby his sister 3 years younger than him is bigger than him ________________________________________________________________________________\ ____ Need Mail bonding? Go to the Yahoo! Mail Q & A for great tips from Yahoo! Answers users. http://answers.yahoo.com/dir/?link=list & sid=396546091 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Hi , My daughter Raegan is 20 months and down to only 3 to 6 ounces by tube daily. She is drinking Just for Kids by Resource which is made by Novartis Pharmaceuticals. Just for Kids is 1.5 calories per ml. I know that you said is allergic to milk, but they also make juices that are 1 calorie per ml. Raegan also gets Benecalorie added to her solids daily, each ml contains 7 calories, so that is very helpful. How many calories would they like to consume daily. Raegan's doctors have her on 1200 calories daily, give or take of course. Also, like someone else wrote, most insurance companies will pay if a script is written. Hope this helps. Good Luck. Judy MacDougal wrote: when i did my post yesterday i forgot to include that nathan is allergic to milk and get sick when he has anything containing milk but you all have very good ideas and i will mention them when he goes to see the specialist mommy to {16 month old CHARGEr} Re: Please Help HI , We are going through that now with our daughter. If you yogurt, use LaCreme....highest fat content. Whole milk for everything. If it doesn't take butter, how about some shredded cheese? We add Duocal to 's nutritian drink. We get it through a medical supply company. It's a calorie booster. YOu may want to ask your doctor about it. Colleen > > went to see his genetic counselar today he said is > doing well but not doing well at the same time. He is concerened > about his weight and height{19 pounds 3 ounces~29 1/2 inches long} > pediatric surgery took his mic-key button out in april he is > following his own curve but its not up where the doctor would like it > we do have someone coming in to work with us and i am following all > her suggestions he doesnt seem to be gaining weight like he should i > have to take him to see a nutrition specialist if she feels there is > nothing more i can do myself to give him calories he will need his > feeding tube back to have all night feeds he is currently taking 24 > calorie formula and stage 2 baby food heres a list of what ive been > doing to help him > > 1}24 calorie formula {except bedtime 30 cal} > 2}adding corn oil to his bottles > 3}adding butter to everthing that will take it > 4}adding formula powder to all his food > > if anyone has any suggestions they would help alot i feel bad but the > doctor told me its nothing i did wrong that weight issues are part of > charge which i understand i even keep charts for his solid food > intake and his formula intake im out of ideas thank you > > mommy to {16 month old CHARGEr} > __________________________________________________________ Food fight? Enjoy some healthy debate in the Yahoo! Answers Food & Drink Q & A. http://answers.yahoo.com/dir/?link=list & sid=396545367 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Hi , Has anyone mentioned " vitalstim " for Wyatt? A google search will give you much information if you are not familiar with it. in Ma. (, 21 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 , We are having the same weight issues with Wyatt. He hasn't gained any weight in a year and a half. Stuck at 20 lbs, give or take. We are supposed to get 1000 calories a day in him, which can be challenging. We just had to have his nissen re-done (this past Wednesday) which I'm hoping helps us a lot. We'd been having a lot of problems with food coming up. He can't take anything by mouth yet because of the aspiration/ineffective swallow issue so we rely solely on the g-tube feeds, and his g-tube site leaks like crazy!!!! We use duocal in his formula (pediasure with fiber), but then we have to give him more free fluid on top of that. It seems like we are feeding him round the clock just to get his requirements in. I wish I had some magic answer for you. Know that if I find something that works magic y'all will be the first to know!! Mom to Wyatt 2 y 4 mos. > > went to see his genetic counselar today he said is > doing well but not doing well at the same time. He is concerened > about his weight and height{19 pounds 3 ounces~29 1/2 inches long} > pediatric surgery took his mic-key button out in april he is > following his own curve but its not up where the doctor would like it > we do have someone coming in to work with us and i am following all > her suggestions he doesnt seem to be gaining weight like he should i > have to take him to see a nutrition specialist if she feels there is > nothing more i can do myself to give him calories he will need his > feeding tube back to have all night feeds he is currently taking 24 > calorie formula and stage 2 baby food heres a list of what ive been > doing to help him > > 1}24 calorie formula {except bedtime 30 cal} > 2}adding corn oil to his bottles > 3}adding butter to everthing that will take it > 4}adding formula powder to all his food > > if anyone has any suggestions they would help alot i feel bad but the > doctor told me its nothing i did wrong that weight issues are part of > charge which i understand i even keep charts for his solid food > intake and his formula intake im out of ideas thank you > > mommy to {16 month old CHARGEr} > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 One of our ST's has, but she also said something about it not having been used on kids a whole lot yet. I just read a website about it and it sounds like a good idea to me. Right now we are willing to try just about anything to get things rolling. We're hoping to move to Alaska in the next couple years and want to have the swallowing issue behind us. We can work on the damaged lungs there (lower altitude so it'll be easier for him anyway). Have you used Vitalstim? > > Hi , > > Has anyone mentioned " vitalstim " for Wyatt? A google search will give you > much information if you are not familiar with it. > > in Ma. (, 21 yrs) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 My son Evan is currently receiving VitalStim therapy. We go to the Acheive Center in Wenatchee WA (it's about 1 1/2 hr drive from our home)--this was the closest provider who worked with children (if you go to the VitalStim web page, they have a list of providers but lots of them are nursing homes). The speech therapist who does Evan's treatments is Hal Hunsaker and he has worked successfully with lots of kids. Tomorrow is only Evan's 3rd treatment (we were told to expect it to take 13-14 sessions total). So far, the improvement in swallowing is not super noticeable at home (when he's actually getting the treatments, he doesn't gag or choke at all), but he is definately louder vocally. Hal said that increased volume is the first thing that improves. I'll keep everyone posted on his progress. We were also willing to try just about anything--and this seemed so promising. (mom to Evan, 18 months) Emond wrote: One of our ST's has, but she also said something about it not having been used on kids a whole lot yet. I just read a website about it and it sounds like a good idea to me. Right now we are willing to try just about anything to get things rolling. We're hoping to move to Alaska in the next couple years and want to have the swallowing issue behind us. We can work on the damaged lungs there (lower altitude so it'll be easier for him anyway). Have you used Vitalstim? > > Hi , > > Has anyone mentioned " vitalstim " for Wyatt? A google search will give you > much information if you are not familiar with it. > > in Ma. (, 21 yrs) > > > Quote Link to comment Share on other sites More sharing options...
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