Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Leah, Wow, what a little trooper she is. BTW - I love the name Olivia. Matt was born IUGR (Interuterine growth retardation) at about 37 weeks. He is adopted so the dates and his medical history are less than accurate. His first year he had terrible reflux. He gained enough to keep him off of any medicine and then at a year, it stopped. Looking back, I think he still had reflux, he just wasn't eating enough to keep " spitting up " . He really stopped eating. No appetite, hard to get anything in him and he had problems gaining weight. Now at 6 his GI doctor thinks he has reflux and delayed gastric emptying, both of which seem to be common in RSS kids. He has probably always had this. We have never had the constipation issues, but other moms have, they will be writing soon. Was Olivia premature? Looking at the photos is a good way to see what the " RSS " look is. Just click on Photos to the left of your screen and brouse around. Matt is 6, so is hard to see if he does have the facial features, but others have pictures of their infants. Good luck and keep the questions coming! Beth > Thankyou guys for the warm welcome! Olivia has had a bit of a rough > go at it for the first few years, she was 2 months old when > discharged from the hospital after her birth and weighed 3lb 6 oz. > We had a horrible time trying to get her to eat and grow! Olivia has > since been diagnosed with Osteogenisis imperfecta (brittle bone > disease), only one break to date though, yay. dairy and soy > allergies, severe astigmatisim needing glasses to correct and delays > in all areas. Our big issues at the moment are severe light > sensitivity and " pooping problems " , she has had chronic constipation > since she was 4 days old and we have never been able to get over it. > Although we have been refered to a ped. GI we haven't got an > appointment date as yet. Beth, may I ask what GI problems your son > has? I'm not too sure what to expect at the appt. but the genetisist > had said that they may need to do a biopsy. > I'd appreciate any advice out there!! > > Leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Hi Leah, My grandson, , was impossible to feed by 7-8 months of age, and now has a G-Tube. He was 3# 5oz when he was born, and 3# 11oz when he came home from the NICU 3.5 weeks later. suffered from severe silent reflux, delayed gastric emptying, and had developed an oral aversion by the age of 8.5 months, when we took him to NY to see Dr H. At that time, he weighed only 8#. What was suppose to be a three-day visit, became a three-week stay, and he had the triple procedure done. (A Nissan fundoplication, tightening the top of the stomach to reduce reflux. A pyloroplasty, cutting the pylorus to speed up gastric emptying. And the insertion of a G-tube for feeding.) Life has been immensely improved since that time. It's not that we haven't had any problems, but it is a tremendous relief to know that is receiving nutrition on a regular basis. And it has made wonderful changes in . At 8.5 months of age, was leery of being held. It seemed that every time we were picking him up, we were shoving a bottle in his mouth, and he got to where he wanted you to be there, but not to pick him up or cuddle with him. His physical development at the time was that of a newborn. He couldn't even support his own head. At 16.5 months of age, is quickly catching up to his age group. He sits up on his own, butt-scoots where ever he wants to go, pulls up to standing, really wants to walk, does one-piece/one-hole puzzles, does a 9pc. shape cube, loves books, and babbles a mile-a-minute with an opinion about everything! LOL From my understanding, none of these problems are unusual with RSS, at least in the more severe cases. One important point I think I should make, is that without research and learning, none of these problems would have been found. When the Drs here ran a delayed gastric emptying study, they told us he " might " be experiencing slight DGE. They have never been able to catch his reflux on any test they've run, but all of his symptoms (and the endoscopy Dr H ran) prove that it exists. They have run several swallowing studies, and cannot seem to catch him aspirating, but every time we try to feed him anything orally, he develops lung problems. Remember that Drs don't know everything, and tests don't catch everything. sometimes, plain old observation works best. Good luck and if you have any other questions, feel free to ask. Pat (g-ma to , RSS, 16.5 months, 13#, 26 " , Zantac, GT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Tina, is 4 and weighs 55 lbs.It too, is all in her stomach area. I always say she looks pregnant. No one particulary knows why. What he is going through might sound like cyclical vomiting? With cyclical vomiting, contrary to the name, there isn't always vomting, but nausea and feeling like you are going to throw up. Have they considered this abdominal migraines? How can they not think it could be linked to a metobolic situation? What about food alleriges or sensitivities? Do you notice more after her drinks milk or eat something in particular? Did you start milk at age one? Isn't that when it started? My youngest has a sensitivity to milk protein (and wheat, peanut and egg). She never had normal poops. It isn't a true allergy, but it causes an inflammation in the intestines and stomach. We have taken her off it all of these things and she is doing better. Have they tested for allergies? It is a simple blood test. Even when Molly had this probelm ,she always gained weight. Good luck, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Tina, is 4 and weighs 55 lbs.It too, is all in her stomach area. I always say she looks pregnant. No one particulary knows why. What he is going through might sound like cyclical vomiting? With cyclical vomiting, contrary to the name, there isn't always vomting, but nausea and feeling like you are going to throw up. Have they considered this abdominal migraines? How can they not think it could be linked to a metobolic situation? What about food alleriges or sensitivities? Do you notice more after her drinks milk or eat something in particular? Did you start milk at age one? Isn't that when it started? My youngest has a sensitivity to milk protein (and wheat, peanut and egg). She never had normal poops. It isn't a true allergy, but it causes an inflammation in the intestines and stomach. We have taken her off it all of these things and she is doing better. Have they tested for allergies? It is a simple blood test. Even when Molly had this probelm ,she always gained weight. Good luck, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Tina, is 4 and weighs 55 lbs.It too, is all in her stomach area. I always say she looks pregnant. No one particulary knows why. What he is going through might sound like cyclical vomiting? With cyclical vomiting, contrary to the name, there isn't always vomting, but nausea and feeling like you are going to throw up. Have they considered this abdominal migraines? How can they not think it could be linked to a metobolic situation? What about food alleriges or sensitivities? Do you notice more after her drinks milk or eat something in particular? Did you start milk at age one? Isn't that when it started? My youngest has a sensitivity to milk protein (and wheat, peanut and egg). She never had normal poops. It isn't a true allergy, but it causes an inflammation in the intestines and stomach. We have taken her off it all of these things and she is doing better. Have they tested for allergies? It is a simple blood test. Even when Molly had this probelm ,she always gained weight. Good luck, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 Grace has had some severe issues with reflux. With her I think we tried 3-4 different medications to get one that worked. For her it is the Prevacid, but everybody is different. For a time when she was about 6 months she was up to the adult dose. After that she was able to be off it for about one year. Now just this week she is back on it, and will have to up the dose soon. As far as his stomach being bloated and vomiting so much, have they considered delayed gastric emptying. This is now being considered for Grace. Her GI is hoping the Prevacid will help her to stop vomiting but if it does not they are going to do the study. Best wishes for your family. Quote Link to comment Share on other sites More sharing options...
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