Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 Hi Have you checked out www.magicfoundation.com yet? It's a wonderful place to find out all there is to know. I just wanted to tell you that my son Adam, who will be 13 yrs.old on October 9th.......never had a feeding tube. At 19 months of age he was Ok and I didn't even know there was anything wrong. I don't know if the amount of calories is enough because I never had to count calories with Adam. but I want you to know that feeding tubes MAY be necessary but not A FOR SURE thing!!! AS for long lasting damage neurologically or in other ways, the most important thing is not to allow your child's blood sugars to go too low. Others who have more experience with keytones etc will rhyme in for me.Again I didn't know about RSS or hypoglycaemia and Adam's father was flipping on me to get him to sleep through the night so I did! But basically you need to worry about " damage " if you don't feed your child regularly. IN the middle of the night is key. I will let others talk to this with you because I didn't know about it all until it was too late. Welcome to the group! Debby in Toronto can anyone help? > > > Hello, > My name is , I learned of my daughters diagnosis last > month, and a few days ago found this site, and thought I'd join the > chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest > concern is, I've heard so much about the feeding tubes, and her > devel. ped. didn't mention it, I learned how common it is on-line > after I got the diagnosis, and the nutritionist I've been working > with wasn't thrilled about the idea when I brought it up to her > recently. Yet I know Dasia definitely has plenty of bad days, and > inside I'm terribly afraid of compromising her final height, or her > brain development! The nutr. says she should be getting 850 > calories, and I'm quite sure that rarely happens, if ever. Is there > anyone with the same aged child who could say how much their child > is getting? Or someone who remembers this age? I have to blend her > food, all high calorie, high fat foods, and on a good day she'll > finish two 4oz containers, one usually at lunch and the other at > dinner. I add heavy whipping cream to her milk which has carn. > instant breakfast, and on a good day will finish an 8oz cup. She'll > have a little bit of food for breakfast, and a couple bites of > different things I try to offer her during the day, and that's > pretty much it! The only thing that has kept me from getting overly > worked up about it all, is the fact that she doesn't look really > skinny, she has a little double chin, and looks pretty healthy to > me, with what looks like a healthy amount of baby fat, certainly not > as chunky as I would want, like my other 2 were! She just looks like > a much younger baby, and has a very small frame. The logical side of > me thinks her body wouldn't be storing any body fat, if the energy > was intended for growth or brain devel., or maybe I'm just in > denial! Anyone? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 Hi, . Welcome to our group. I am the mom of Max, a 17 year old with RSS, and Jenna who is now 20 (no RSS). We've been through just about everything, so I know a lot from experience. Sigh. It seems to me that a baby like Dasia who is her weight is a bit on the low side. I did not do a weight to height comparison, however. Do you know what it is? As Debby mentioned, the key thing to look out for in an RSS or SGA baby (small for gestational age) is nighttime hypoglycemia. Many doctors are not aware that this is common in our kids and they go for a long time with intermittent bouts of it without ever knowing it is present. It does not always show up on a finger stick, either. One way to prevent this is to add cornstarch to her bottle or cup in whatever she drinks before going to sleep. Cornstarch is a complex carbohydrate and takes longer for the body to break down, so the blood sugars are more stable. The other thing to check for is ketones in her urine in the morning or anytime that she is sick. The presence of ketones means that the glycogen stores in the body have been used up (fat helps this storage) and the body is burning muscle for fuel. The body will burn anything it can in order to preserve the brain. If there is not enough, then other problems can result. It's easy to check for ketones. Just buy ketosticks at the drugstore and put an cotton ball in her diaper. When you want to check for ketones, squeeze the drops of urine onto the stick, wait 30 seconds and compare the little pad to the chart on the container. If she has ketones at any level, feed her. If they are moderate to large, there is a whole other protocol to follow. I don't want to overwhelm you, so let's let that stay for awhile. I or someone else can explain that in the future. Please keep in mind, and let your doctors and nutritionist know, that growth will never attempt to catch up if Dasia is not getting enough calories. Dr. Harbison, or Dr. H., as we lovingly call her, is an expert on RSS and based at Mt. Sinai Hospital in NYC. She speaks at the MAGIC Convention every summer and stresses over and over again that " our children cannot grow on air. " They need to make up their caloric deficits and then the parents see accelerated growth for awhile. Then the growth will fall off again and, if you so choose, it is time to start growth hormone injections. For the present, getting those calories into her is the most important thing you can do. And you already know that, even if the " professionals " you are taking her to do not believe that. Where do you live? Is it possible for you to come to NYC to see Dr. H? I am in NJ so it is easy for us to take Max to see Dr. H. In fact, Max was her 3rd RSS baby/patient. Okay, now digest all that I wrote and try to relax. We are a big family here and we will help you out the best we can. You have found the best place for information and support. Please post and email us as you need to. We are here for each other. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 HI! Welcome! YOu have found the right place! I have an almost 6 year old son and my daughter Emerence is 31 months, 22lb and 32 " . She is diagnosed small for gestational age but with a whole lot of RSS features, but most mild and therefore our geneticist calls her RSS. Either way, same thing pretty much! She is an " eater " and has not had a feeding tube. However, I do worry constantly about getting enough in. At 19 months Emerence weighed 18 lb 7 oz and was 28.8 " . I think your daughter is a bit underweight for height when I compare the two. Anyways, where are you from? Someone here will be able to recommend you to a good endocrinologist (this will be the person who will most be able to help and treat your daughter). If you are near NY you are lucky and can go see Dr. H the dr. who sees about 125 RSS kids plus all the rest of us at the convention every year. My best suggestion for you is to join MAGIC ($30) nd then order the 6 dvds from the past two years convention. the information will help A LOT. Good luck, love to hear from you! By the way, Oct is WALK for MAGIC month so you may be able to meet a bunch of parents and kids at once if there is a walk near you. from Massachusetts, mom to and Emerence -- In RSS-Support , " cjajdmalcolm " <cjajdmalcolm@y...> wrote: > > > Hello, > My name is , I learned of my daughters diagnosis last > month, and a few days ago found this site, and thought I'd join the > chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest > concern is, I've heard so much about the feeding tubes, and her > devel. ped. didn't mention it, I learned how common it is on-line > after I got the diagnosis, and the nutritionist I've been working > with wasn't thrilled about the idea when I brought it up to her > recently. Yet I know Dasia definitely has plenty of bad days, and > inside I'm terribly afraid of compromising her final height, or her > brain development! The nutr. says she should be getting 850 > calories, and I'm quite sure that rarely happens, if ever. Is there > anyone with the same aged child who could say how much their child > is getting? Or someone who remembers this age? I have to blend her > food, all high calorie, high fat foods, and on a good day she'll > finish two 4oz containers, one usually at lunch and the other at > dinner. I add heavy whipping cream to her milk which has carn. > instant breakfast, and on a good day will finish an 8oz cup. She'll > have a little bit of food for breakfast, and a couple bites of > different things I try to offer her during the day, and that's > pretty much it! The only thing that has kept me from getting overly > worked up about it all, is the fact that she doesn't look really > skinny, she has a little double chin, and looks pretty healthy to > me, with what looks like a healthy amount of baby fat, certainly not > as chunky as I would want, like my other 2 were! She just looks like > a much younger baby, and has a very small frame. The logical side of > me thinks her body wouldn't be storing any body fat, if the energy > was intended for growth or brain devel., or maybe I'm just in > denial! Anyone? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 Hi Debby! I have been to magic, I haven't been able to find any certain criteria that says when a child should have a feeding tube. It's hard to say exactly how many calories she's getting, if I were to guess, I would say 650-700, and the 850 they wanted her to get were " catch-up " calories. I guess I'm too impatient to wait for our Dr. to watch and chart her progress, then decide she's needed one all along. Or more than that, I'm probably hoping someone will have a similar situation, and their child did fine with development, that where she's at is okay, for the disorder, that the growth hormone will be enough. I've also heard there is a prescribed drug that kids can get to make them hungrier. I will probably ask my Dr. for that next time I see him. Speaking of the growth hormone, another woman who I talked to, started it for her daughter at 18mo and my Dr. said Dasia will start at the age of 3. Anyone know about that? If it depends on how far behind the child is in growth depends on when they start? Confused, Deb wrote: Hi Have you checked out www.magicfoundation.com yet? It's a wonderful place to find out all there is to know. I just wanted to tell you that my son Adam, who will be 13 yrs.old on October 9th.......never had a feeding tube. At 19 months of age he was Ok and I didn't even know there was anything wrong. I don't know if the amount of calories is enough because I never had to count calories with Adam. but I want you to know that feeding tubes MAY be necessary but not A FOR SURE thing!!! AS for long lasting damage neurologically or in other ways, the most important thing is not to allow your child's blood sugars to go too low. Others who have more experience with keytones etc will rhyme in for me.Again I didn't know about RSS or hypoglycaemia and Adam's father was flipping on me to get him to sleep through the night so I did! But basically you need to worry about " damage " if you don't feed your child regularly. IN the middle of the night is key. I will let others talk to this with you because I didn't know about it all until it was too late. Welcome to the group! Debby in Toronto can anyone help? > > > Hello, > My name is , I learned of my daughters diagnosis last > month, and a few days ago found this site, and thought I'd join the > chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest > concern is, I've heard so much about the feeding tubes, and her > devel. ped. didn't mention it, I learned how common it is on-line > after I got the diagnosis, and the nutritionist I've been working > with wasn't thrilled about the idea when I brought it up to her > recently. Yet I know Dasia definitely has plenty of bad days, and > inside I'm terribly afraid of compromising her final height, or her > brain development! The nutr. says she should be getting 850 > calories, and I'm quite sure that rarely happens, if ever. Is there > anyone with the same aged child who could say how much their child > is getting? Or someone who remembers this age? I have to blend her > food, all high calorie, high fat foods, and on a good day she'll > finish two 4oz containers, one usually at lunch and the other at > dinner. I add heavy whipping cream to her milk which has carn. > instant breakfast, and on a good day will finish an 8oz cup. She'll > have a little bit of food for breakfast, and a couple bites of > different things I try to offer her during the day, and that's > pretty much it! The only thing that has kept me from getting overly > worked up about it all, is the fact that she doesn't look really > skinny, she has a little double chin, and looks pretty healthy to > me, with what looks like a healthy amount of baby fat, certainly not > as chunky as I would want, like my other 2 were! She just looks like > a much younger baby, and has a very small frame. The logical side of > me thinks her body wouldn't be storing any body fat, if the energy > was intended for growth or brain devel., or maybe I'm just in > denial! Anyone? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 , You basically just discribed the first year of all of our lives!! First things first you need to find a doctor in your area ( ur from where? ) that has experience with RSS. It doesn't matter what the doctor's specialty is because they will refer you to the best docs in ever field. Our daughter Madison is 4 and we just now finally got all her doctor's squared away. As we know failure to thrive ( or FTT ) is expected of these kids, the treatment isn't the same for a child that is physically and mentally healthy with just FTT. Our children require much closer attention and their care shouls only be by a doctor who is willing to listen to you and try new things. Does your child have any other issues that you may be aware of?? Since she has confermed FTT and RSS you may want her GI evaluated more in depth. Most but not all of these children have sever gut dismotility. this will require a milk scan to diagnosis. This is where the rate at which food is digested is so slow. Any endocrin issues?? I could go on for days so in short how about if you fill me in on what you DO know about your child's health and we can go from there. Where are you from again??? Chrissy mom to.... Louis 6 Madison 4 RSS Shane 2 11 1/2 mon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 - Welcome to the group - I'm pretty new here myself - my son was diagnosed with RSS at 9 mos (currently 28 mos) - but, we haven't had the tube issues, medicine issues as of yet - so, not much on advice for medical treatments....but, I'm more up there with emotions than anything.... Keep your chin up - we are all here for you. - H > Hi > Have you checked out www.magicfoundation.com yet? It's a wonderful place to find out all there is to know. > > I just wanted to tell you that my son Adam, who will be 13 yrs.old on October 9th.......never had a feeding tube. At 19 months of age he was Ok and I didn't even know there was anything wrong. I don't know if the amount of calories is enough because I never had to count calories with Adam. but I want you to know that feeding tubes MAY be necessary but not A FOR SURE thing!!! > > AS for long lasting damage neurologically or in other ways, the most important thing is not to allow your child's blood sugars to go too low. Others who have more experience with keytones etc will rhyme in for me.Again I didn't know about RSS or hypoglycaemia and Adam's father was flipping on me to get him to sleep through the night so I did! > But basically you need to worry about " damage " if you don't feed your child regularly. IN the middle of the night is key. I will let others talk to this with you because I didn't know about it all until it was too late. > > Welcome to the group! > > Debby in Toronto > can anyone help? > > > > > > > > Hello, > > My name is , I learned of my daughters diagnosis last > > month, and a few days ago found this site, and thought I'd join the > > chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest > > concern is, I've heard so much about the feeding tubes, and her > > devel. ped. didn't mention it, I learned how common it is on- line > > after I got the diagnosis, and the nutritionist I've been working > > with wasn't thrilled about the idea when I brought it up to her > > recently. Yet I know Dasia definitely has plenty of bad days, and > > inside I'm terribly afraid of compromising her final height, or her > > brain development! The nutr. says she should be getting 850 > > calories, and I'm quite sure that rarely happens, if ever. Is there > > anyone with the same aged child who could say how much their child > > is getting? Or someone who remembers this age? I have to blend her > > food, all high calorie, high fat foods, and on a good day she'll > > finish two 4oz containers, one usually at lunch and the other at > > dinner. I add heavy whipping cream to her milk which has carn. > > instant breakfast, and on a good day will finish an 8oz cup. She'll > > have a little bit of food for breakfast, and a couple bites of > > different things I try to offer her during the day, and that's > > pretty much it! The only thing that has kept me from getting overly > > worked up about it all, is the fact that she doesn't look really > > skinny, she has a little double chin, and looks pretty healthy to > > me, with what looks like a healthy amount of baby fat, certainly not > > as chunky as I would want, like my other 2 were! She just looks like > > a much younger baby, and has a very small frame. The logical side of > > me thinks her body wouldn't be storing any body fat, if the energy > > was intended for growth or brain devel., or maybe I'm just in > > denial! Anyone? > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 Hi Chrissy, I do have a great devel. ped. who is also a genetecist, who sees at least 2 other kids with RSS, and was referred to me as the best in the state. I have also been referred to an endo, who was recommended highly by another lady here in Indianapolis, IN whose little girl has RSS. I can call her and get a GI doc I'm sure. I'm just learning that I need one from all of you! One question I do have about that, is there anything that can be done about those absorbtion issues? I just don't want to put Dasia through any unnecessary testing if there isn't a remedy. She never throws up or complains, she's very happy, and active, and I never would have suspected any digestive issues. She does get constipated, but I thought that was because I feed her a lot of dairy, because of the high calories and fat in it. I've since added more fruit juices, and refried beans, and that seems to help. Other than that, she seems completely normal in that area, she has regular, normal bowel movements most of the time, 1-3 a day, and will occasionally skip a day. She's been in PT for her low tone, and just the other day took her 1st 4 steps! She was delayed with every gross motor skill, and she has OT for getting her on solid table foods, she only will eat blended. Some certain other foods too, Cheese Puffs, or a donut occasionally. She's getting orthotics on Fri, for more stability to walk, she has joint laxity, causing her ankles to turn outward. I think those are the only noticable problems, aside from her size. Are there usually unnoticable GI problems with these kids, or are there signs, and are then referred to a Dr? Oh and she'll be getting evaluated for speech therapy this week, which I'm sure she'll need. She only says a few words, she's sopposed to have more at 19 months. Thank you! Avery 6 Jaden 3 Dasia 19mo RSS > , > You basically just discribed the first year of all of our lives!! First > things first you need to find a doctor in your area ( ur from where? ) that has > experience with RSS. It doesn't matter what the doctor's specialty is because > they will refer you to the best docs in ever field. Our daughter Madison is > 4 and we just now finally got all her doctor's squared away. As we know > failure to thrive ( or FTT ) is expected of these kids, the treatment isn't the > same for a child that is physically and mentally healthy with just FTT. Our > children require much closer attention and their care shouls only be by a > doctor who is willing to listen to you and try new things. > Does your child have any other issues that you may be aware of?? Since she > has confermed FTT and RSS you may want her GI evaluated more in depth. Most but > not all of these children have sever gut dismotility. this will require a > milk scan to diagnosis. This is where the rate at which food is digested is so > slow. > Any endocrin issues?? > I could go on for days so in short how about if you fill me in on what you > DO know about your child's health and we can go from there. Where are you > from again??? > Chrissy > mom to.... > Louis 6 Madison 4 RSS Shane 2 11 1/2 mon > > > Quote Link to comment Share on other sites More sharing options...
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