Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Hi - My little girl Laikyn only uses her button as she calls it at night also. She uses peptimen jr and it works great for her. The problem is its expensive but if you have insurance and Medicaid it will be covered. We are also using the zexex pump and that has also been good for us. Not so much for others but we have not had many problems with it. It is small and we travel a lot so that helps tuns. The button is not as bad as it seems, I know it sounds scary but really it is not. Laikyn got hers when she was 2 months old so we are a bit use to it by now but once you get the hang of it there is really nothing to it. Hope this helps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 mary Even if Connor didnt gain much weight, is it because his height gain plateued? His weight for height ratio seems good, my daughter is same height (27 inches) but only 17.8 lbs at 27 months and around 50% weight for height. SHe is not RSS but SGA, her main difference I see with RSS kids is she always maintains around 50% weight for height, both pre and post GH (she started 5 months ago). She now eats around 1200 cals/day, mainly pediasure (just over 3 cans/day) added with cereal and baby food. As snack she eats cheese sauce avocado mashed etc . She cannot eat solid food yet. Now she gains on average 3 ounce per week (it was 6 ounce a month before GH) which matches her height gain. She eats more after GH (no periactin) to keep up with the height gain. May be Connor will gain weight with height with GH too. Good luck, Sabina mother of Naomi SGA 27 months > > Hey Y'all! > > O.k., continuing the post I started yesterday. Graham had asthma > like symptoms brought on by Bronchitus. He's fine now. > > We have some good news! We now are getting the E. D. Waiver in > Virginia and also we were approved for Medicaid for Connor. Whew! > But the Pede. Endo. is not happy that Connor's weight plateaued. > So, now we have to go back to the Pede G. I. Guy in Roanoke. > > My questions are: How many calories a day does Connor need to gain > wt and grow on the shot? Presently he is 21 lbs and 27 inches > long. I guess the older Connor gets, the more he realizes that he > is genuinely not hungry. Even on Periactin, his eating behavior is > to sit at the table with the family, eat three bites of food then > say, " All done Mommy! " " Go Play. " No amount of cajoling or > persistent enforcement works. We do offer high calorie snacks. I > bake a killer pumpkin mini muffin that's loaded with good carbs and > fats for him. He'll eat two in a day plus two bottles of Pediasure, > sometimes three. We give him a bottle to take to bed and it's > almost always gone in the morning. By my calculation Connor is > getting about 900 calories a day. Of course when he's sick, this > goes down drastically. > > So, even though I've fought this off for two years now, I think I'm > to the point of saying, " I guess a g-tube isn't so bad. " Recently I > reviewed the convention DVD's and the pt. that Dr. H. made was that > we are in essence fighting against their very nature to eat as they > are the thriftiest phenotype out there. Starvation is natural to > them. Well, if medical intervention is needed, so be it. > > So, what's the good stuff to put in the tube. How long is the > surgery? WHat type of pumps work well for you all? I'm > anticipating that we are going to need only night time feeds as he > is an oral eater right now. His reflux appears to be very mild > right now. We are controling it with Zantac primarily. The > prevacid is hard to give his as he doesn't like the grains or the > taste. > > That's all for now. S.T. is here. Advice would be appreiciated! > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Hi , I was really glad to hear that you received the waiver. It will certainly make things easier for you. Generally speaking, the pediatric GI is probably not going to much help in the weight gain department. Dr H has a set number of calories per kilo she thinks " our " kids need to grow. I can't remember what it is, although I am sure that someone else will respond to you. at age 5 (although we see Dr H on friday so this might change) receives 550 calories through his pump at night plus 220 calories through his pump during the day plus 3 meals and snacks. By my count, he is about 37 1/2 inches and 30 pounds. We fought the pump and finally caved in when was 2 years and 4 months. For us, it has definitely made things easier. The eating just isn't as big an issue. When had the surgery he had the triple procedure, so the surgery is different. I don't remember how long the surgery was, but he was in the hospital for 12 days. The last few days were just to get his pump feeds up and to make sure he could still tolerate oral feeds. We use the Zevex entralite pump. I understand from recent posts that Zevex just came out with a new pump that is even lighter and easier to work with. Feel free to email me directly at heraldjcb@ aol.com Judith, Steve, (RSS) and (non RSS) 5 year old twins Quote Link to comment Share on other sites More sharing options...
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