Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Katy, Please do not beat yourself up over the lack of weight gain. It is not your fault. I too, blamed myself for my daughter's weight or lack thereof at times. Just hang in there. Whenever my daughter gets hospitalized, she goes home with weight gain. She does not have a g-tube yet. Her appetite is crappy at the moment and she has some underlying kidney issues. It is so hard when I see the amount of time it takes for my daughter to gain back even very small ounces that she has lost. Sometimes I feel like we are back pedaling. I have tried everything I can think of. It is as if she is on a hunger strike. At times she eats and eats and eats, and she barely gains weight at all. Good luck.....Hope all goes well. Jenna Hannah 20months cf, Shamus 6 1/2 nocf, a 4 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Hi all!! Well Piper had her first annual visit at our CF clinic. It was certainly an experience. Her doc was not happy with the amount of weight she had gained. He said that it was cause for concern. He recently switched her from pregestimil with polycose & microlipid, to pediasure with scandishake. Well we had trouble with our supply company so we haven't been able to add the scandishake until today. He suggested that we do night feeds with a pump, and I gave him a very firm NO. With the problems she has had in the past couple of months with her nissen, etc, I just didn't feel comfortable doing that. So he is going to let me try the pediasure with scandishake for 4-6 weeks, and I will take her in for another weight check. If it is not a considerable amount then he is going to admit her because he thinks that there may be more to the problem. I don't know what it could be though? He said something about having her stool analyzed for fat absorption, etc.... I am so frustrated!! Here I thought that we were doing good, she was taking all her feeds by mouth, and only using her button for meds, and now were back to where we started. Mu husband is now mad at me for this, like its my fault that she isn't gaining enough weight, sometimes I wonder if he thinks that I'm not feeding her or what!!!! Sorry, for rambling, but I had to get this out!! Katy mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 I have definitely been in your shoes. Ashton got his g-tube when he was a year old and we love it. He is in the 25th percentil for his actual age. Unfortunately, that is the only way he gets any food. He refuses to eat by mouth but he never was interested in food and he was also 11 weeks premature so there are other issues going on. How about giving her a teaspoon of canola oil at every feeding? Every teaspoon has 40 calories. It is a quick and easy way to boost some calories. As for night feeds, have you tried (you probably have) starting her night feed right after you put her to bed and letting it run until maybe 2am? And have they tried Reglan to keep vomiting to a minimum? It worked like a charm for us. And Polycose was actually bad for our son--it slows digestion and made it hard for his stomach to empty which increased his vomiting. Are you maxing out on enzymes? We had to use the highest dose in order for it to work. He is on Viokase, the powder enzyme. And finally, it is not your fault. It is just something that happens to some CF kids and it sucks. I finally bought a nice digital infant scale (from ebay I think) and we weight Ashton at night so we know where we are at. It helps me tremendously know what is happening with his weight. Good luck. mom to Ashton, 2 with CF > Hi all!! Well Piper had her first annual visit at our CF clinic. It was certainly an experience. Her doc was not happy with the amount of weight she had gained. He said that it was cause for concern. He recently switched her from pregestimil with polycose & microlipid, to pediasure with scandishake. Well we had trouble with our supply company so we haven't been able to add the scandishake until today. He suggested that we do night feeds with a pump, and I gave him a very firm NO. With the problems she has had in the past couple of months with her nissen, etc, I just didn't feel comfortable doing that. So he is going to let me try the pediasure with scandishake for 4-6 weeks, and I will take her in for another weight check. If it is not a considerable amount then he is going to admit her because he thinks that there may be more to the problem. I don't know what it could be though? He said something about having her stool analyzed for fat absorption, etc.... I am so > frustrated!! Here I thought that we were doing good, she was taking all her feeds by mouth, and only using her button for meds, and now were back to where we started. Mu husband is now mad at me for this, like its my fault that she isn't gaining enough weight, sometimes I wonder if he thinks that I'm not feeding her or what!!!! > Sorry, for rambling, but I had to get this out!! > > Katy > mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 , Piper got her tube when she was in the hospital in November, at the time it was great, but even with the button she still didn't gain much weight. Just recently she started taking all of her feeds by mouth and it was wonderful. My and my husbands family were more willing to keep her for us since she wasn't doing her tube feeds. The only thing with night feeds is that she is very active in her sleep, and I'm afraid that she might pull it out, or get twisted up in the tube itself. She also has a nissen that she has partially " blown " , she has a hernia at the site and I don't want it to herniate anymore, because it would require surgery to fix. Yes she was on Reglan, but since she started taking her feeds by mouth we haven't needed it. They found that when they did her upper GI that she wasn't refluxing anymore. Her enzyme dose is maxed, she in on the Creon 5 with a max of 14 per day. Thank you for reassuring me that it is not my fault, but I can't help but feel that way because her eating is totally up to me. I do make sure that she gets all the feeds per day that they require, but apparently that isn't't enough. I am so worn out with all of this, and it hasn't even been a year since her diagnosis, please tell me that it gets better!!! The scale thing isn't a bad idea, one that I haven't thought of, thank you!! Thanks again!! Katy mom to Austin 4 no CF & Piper (1 on Saturday) w/CF " J. " wrote: I have definitely been in your shoes. Ashton got his g-tube when he was a year old and we love it. He is in the 25th percentil for his actual age. Unfortunately, that is the only way he gets any food. He refuses to eat by mouth but he never was interested in food and he was also 11 weeks premature so there are other issues going on. How about giving her a teaspoon of canola oil at every feeding? Every teaspoon has 40 calories. It is a quick and easy way to boost some calories. As for night feeds, have you tried (you probably have) starting her night feed right after you put her to bed and letting it run until maybe 2am? And have they tried Reglan to keep vomiting to a minimum? It worked like a charm for us. And Polycose was actually bad for our son--it slows digestion and made it hard for his stomach to empty which increased his vomiting. Are you maxing out on enzymes? We had to use the highest dose in order for it to work. He is on Viokase, the powder enzyme. And finally, it is not your fault. It is just something that happens to some CF kids and it sucks. I finally bought a nice digital infant scale (from ebay I think) and we weight Ashton at night so we know where we are at. It helps me tremendously know what is happening with his weight. Good luck. mom to Ashton, 2 with CF > Hi all!! Well Piper had her first annual visit at our CF clinic. It was certainly an experience. Her doc was not happy with the amount of weight she had gained. He said that it was cause for concern. He recently switched her from pregestimil with polycose & microlipid, to pediasure with scandishake. Well we had trouble with our supply company so we haven't been able to add the scandishake until today. He suggested that we do night feeds with a pump, and I gave him a very firm NO. With the problems she has had in the past couple of months with her nissen, etc, I just didn't feel comfortable doing that. So he is going to let me try the pediasure with scandishake for 4-6 weeks, and I will take her in for another weight check. If it is not a considerable amount then he is going to admit her because he thinks that there may be more to the problem. I don't know what it could be though? He said something about having her stool analyzed for fat absorption, etc.... I am so > frustrated!! Here I thought that we were doing good, she was taking all her feeds by mouth, and only using her button for meds, and now were back to where we started. Mu husband is now mad at me for this, like its my fault that she isn't gaining enough weight, sometimes I wonder if he thinks that I'm not feeding her or what!!!! > Sorry, for rambling, but I had to get this out!! > > Katy > mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Oh Katy, I can really sympathize with you about the weight thing. We are still struggling with it. Good for you for being firm about those night feeds. Have you considered a small bolus feed after dinner? Maybe not every day but on the days when she didn't eat much? say 2 or 3 times a week? has 6 feeds a week. We always do them after dinner, they last about an hour. Those bolus feeds might help. Have you tried DuoCal? your pharmacy can probably order it or maybe the med supply company. It is a " powdered blend of fat and carbohydrates " It's a tasteless high cal powder that can be mixed with liquids like milk or pediasure. Have they mentioned changing enzymes? Sometimes that helps. The test they want to do measures how much fat is in the stool. They will probably have you do a food diary at the same time to figure out how much fat has been consumed. this should help them to know how much fat she is absorbing. Your hubby is probably just frustrated too. Keep rambling, sometimes it helps! frustrated Hi all!! Well Piper had her first annual visit at our CF clinic. It was certainly an experience. Her doc was not happy with the amount of weight she had gained. He said that it was cause for concern. He recently switched her from pregestimil with polycose & microlipid, to pediasure with scandishake. Well we had trouble with our supply company so we haven't been able to add the scandishake until today. He suggested that we do night feeds with a pump, and I gave him a very firm NO. With the problems she has had in the past couple of months with her nissen, etc, I just didn't feel comfortable doing that. So he is going to let me try the pediasure with scandishake for 4-6 weeks, and I will take her in for another weight check. If it is not a considerable amount then he is going to admit her because he thinks that there may be more to the problem. I don't know what it could be though? He said something about having her stool analyzed for fat absorption, etc.... I am so frustrated!! Here I thought that we were doing good, she was taking all her feeds by mouth, and only using her button for meds, and now were back to where we started. Mu husband is now mad at me for this, like its my fault that she isn't gaining enough weight, sometimes I wonder if he thinks that I'm not feeding her or what!!!! Sorry, for rambling, but I had to get this out!! Katy mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Dear Kathy, I do so hope you all can get this feeding on a roll for her. It can be such a stressor . I also want to let you know that if you cant find the DuoCal , where you get your items, We carry it , and all items known to CF families as well as all else for anyone. You can call me at 1- .Make sure you & your doc feels this can help. didn't want to eat anything but rice. & seuy sauce.....She never went on feeds....we kinda teased her into better eating with the other kids in house. She just decided it was time . ----as she got older , I used to ask her " , don't you ever what to have boobs " YES, I did, they all laughed so hard ......She has 2 younger sisters (just a year apart..)I guess she figured she didn't want me to say that again. She was about 11 then. She tells people about it now---she is 19 yrs & 6'+ tall... goes to college away from her home .She is very funny anyway , so loves to tell folks . She was voted " funniest " in her senior class 2 years ago too. I called her the class clown (but was honor roll as well ) She acts normal ,eats like a teenager . PIZZA, stuff like that BUT, is doing great being tall & thin. BUT, has VERY strong & Big muscles . She does cross country running competitively....In high school was first in school state .. Don't worry about your wee one , Piper..,as much . Just pour feeding in :) hehe Your doing so well . asking others ,that is wonderful .We all learn from others trials & error & WINS........You all have a really great weekend Let me know if I can every help.... Oh, how about a picture of your precious family??? LOVE & HUGS GRANDMOMBEV Re: frustrated Oh Katy, I can really sympathize with you about the weight thing. We are still struggling with it. Good for you for being firm about those night feeds. Have you considered a small bolus feed after dinner? Maybe not every day but on the days when she didn't eat much? say 2 or 3 times a week? has 6 feeds a week. We always do them after dinner, they last about an hour. Those bolus feeds might help. Have you tried DuoCal? your pharmacy can probably order it or maybe the med supply company. It is a " powdered blend of fat and carbohydrates " It's a tasteless high cal powder that can be mixed with liquids like milk or pediasure. Have they mentioned changing enzymes? Sometimes that helps. The test they want to do measures how much fat is in the stool. They will probably have you do a food diary at the same time to figure out how much fat has been consumed. this should help them to know how much fat she is absorbing. Your hubby is probably just frustrated too. Keep rambling, sometimes it helps! frustrated Hi all!! Well Piper had her first annual visit at our CF clinic. It was certainly an experience. Her doc was not happy with the amount of weight she had gained. He said that it was cause for concern. He recently switched her from pregestimil with polycose & microlipid, to pediasure with scandishake. Well we had trouble with our supply company so we haven't been able to add the scandishake until today. He suggested that we do night feeds with a pump, and I gave him a very firm NO. With the problems she has had in the past couple of months with her nissen, etc, I just didn't feel comfortable doing that. So he is going to let me try the pediasure with scandishake for 4-6 weeks, and I will take her in for another weight check. If it is not a considerable amount then he is going to admit her because he thinks that there may be more to the problem. I don't know what it could be though? He said something about having her stool analyzed for fat absorption, etc.... I am so frustrated!! Here I thought that we were doing good, she was taking all her feeds by mouth, and only using her button for meds, and now were back to where we started. Mu husband is now mad at me for this, like its my fault that she isn't gaining enough weight, sometimes I wonder if he thinks that I'm not feeding her or what!!!! Sorry, for rambling, but I had to get this out!! Katy mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 In a message dated 7/10/2003 9:52:26 PM Eastern Daylight Time, baileyk80@... writes: > I wonder if he thinks that I'm not feeding her or what!!!! > Its easier for MEN to blame someone - remember I hate men!!!!!!!!!!!!!!!!!!!! Rosemary in NY with 3 children (12, 10 and 6) with CF. I have a dog named TOBI and coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 What is nissen? Traci was on night feeds-but she wouldn't take ANYTHING by mouth day or night until she was about 18 months. She never took more than 2 oz in a bottle. It was so frustrating. We were in the hospital every month because she would get dehydrated. They would put in an NG tube. At 9 months we put in the g-tube. Then when we took out her tonsils at 3y/o she started eating much better. When she went into kindergarten she got her g-tube out. She is 8 years now and still has no g-tube. She still has an up and down eating pattern but continues to gain weight. She doesn't like sour cream, cream cheese, butter etc. but loves carrots, peas, asparagus, salad. So the rest of the family is overweight-we eat the other stuff. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Rant on!!! I think most of us have been chewed out one time or another over not enough weight gain. Just keep trying and we'll keep thinking of you and little Piper. Dawn mom of 4, 7 and under, the youngest wcf frustrated Hi all!! Well Piper had her first annual visit at our CF clinic. It was certainly an experience. Her doc was not happy with the amount of weight she had gained. He said that it was cause for concern. He recently switched her from pregestimil with polycose & microlipid, to pediasure with scandishake. Well we had trouble with our supply company so we haven't been able to add the scandishake until today. He suggested that we do night feeds with a pump, and I gave him a very firm NO. With the problems she has had in the past couple of months with her nissen, etc, I just didn't feel comfortable doing that. So he is going to let me try the pediasure with scandishake for 4-6 weeks, and I will take her in for another weight check. If it is not a considerable amount then he is going to admit her because he thinks that there may be more to the problem. I don't know what it could be though? He said s omething about having her stool analyzed for fat absorption, etc.... I am so frustrated!! Here I thought that we were doing good, she was taking all her feeds by mouth, and only using her button for meds, and now were back to where we started. Mu husband is now mad at me for this, like its my fault that she isn't gaining enough weight, sometimes I wonder if he thinks that I'm not feeding her or what!!!! Sorry, for rambling, but I had to get this out!! Katy mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 The scale is a good idea. When we had trouble with Patti's weight we kept a food diary (on our own) and weighed her at the same time every day. It helped me to know that I was doing everything I could. It also kept others from thinking I wasn't doing anything. :-) Dawn mom of 4, 7 and under, the youngest wcf Re: Re: frustrated , Piper got her tube when she was in the hospital in November, at the time it was great, but even with the button she still didn't gain much weight. Just recently she started taking all of her feeds by mouth and it was wonderful. My and my husbands family were more willing to keep her for us since she wasn't doing her tube feeds. The only thing with night feeds is that she is very active in her sleep, and I'm afraid that she might pull it out, or get twisted up in the tube itself. She also has a nissen that she has partially " blown " , she has a hernia at the site and I don't want it to herniate anymore, because it would require surgery to fix. Yes she was on Reglan, but since she started taking her feeds by mouth we haven't needed it. They found that when they did her upper GI that she wasn't refluxing anymore. Her enzyme dose is maxed, she in on the Creon 5 with a max of 14 per day. Thank you for reassuring me that it is not my fault, but I can't help but feel that way because her eating is totally up to me. I do make sure that she gets all the feeds per day that they require, but apparently that isn't't enough. I am so worn out with all of this, and it hasn't even been a year since her diagnosis, please tell me that it gets better!!! The scale thing isn't a bad idea, one that I haven't thought of, thank you!! Thanks again!! Katy mom to Austin 4 no CF & Piper (1 on Saturday) w/CF " J. " wrote: I have definitely been in your shoes. Ashton got his g-tube when he was a year old and we love it. He is in the 25th percentil for his actual age. Unfortunately, that is the only way he gets any food. He refuses to eat by mouth but he never was interested in food and he was also 11 weeks premature so there are other issues going on. How about giving her a teaspoon of canola oil at every feeding? Every teaspoon has 40 calories. It is a quick and easy way to boost some calories. As for night feeds, have you tried (you probably have) starting her night feed right after you put her to bed and letting it run until maybe 2am? And have they tried Reglan to keep vomiting to a minimum? It worked like a charm for us. And Polycose was actually bad for our son--it slows digestion and made it hard for his stomach to empty which increased his vomiting. Are you maxing out on enzymes? We had to use the highest dose in order for it to work. He is on Viokase, the powder enzyme. And finally, it is not your fault. It is just something that happens to some CF kids and it sucks. I finally bought a nice digital infant scale (from ebay I think) and we weight Ashton at night so we know where we are at. It helps me tremendously know what is happening with his weight. Good luck. mom to Ashton, 2 with CF > Hi all!! Well Piper had her first annual visit at our CF clinic. It was certainly an experience. Her doc was not happy with the amount of weight she had gained. He said that it was cause for concern. He recently switched her from pregestimil with polycose & microlipid, to pediasure with scandishake. Well we had trouble with our supply company so we haven't been able to add the scandishake until today. He suggested that we do night feeds with a pump, and I gave him a very firm NO. With the problems she has had in the past couple of months with her nissen, etc, I just didn't feel comfortable doing that. So he is going to let me try the pediasure with scandishake for 4-6 weeks, and I will take her in for another weight check. If it is not a considerable amount then he is going to admit her because he thinks that there may be more to the problem. I don't know what it could be though? He said something about having her stool analyzed for fat absorption, etc.... I am so > frustrated!! Here I thought that we were doing good, she was taking all her feeds by mouth, and only using her button for meds, and now were back to where we started. Mu husband is now mad at me for this, like its my fault that she isn't gaining enough weight, sometimes I wonder if he thinks that I'm not feeding her or what!!!! > Sorry, for rambling, but I had to get this out!! > > Katy > mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 A nissen is a procedure that they do when a child has severe reflux. They take the top part of the stomach and wrap it around the bottom part of the esophagus to make the valve tighter so that they can't reflux or throw up. Sometime it works, other times children can " blow " it through. So far the nissen has been very good for Piper, her reflux was really bad, she couldn't keep anything down even with reflux meds (zantac & reglan). Katy Patpatstoo@... wrote: What is nissen? Traci was on night feeds-but she wouldn't take ANYTHING by mouth day or night until she was about 18 months. She never took more than 2 oz in a bottle. It was so frustrating. We were in the hospital every month because she would get dehydrated. They would put in an NG tube. At 9 months we put in the g-tube. Then when we took out her tonsils at 3y/o she started eating much better. When she went into kindergarten she got her g-tube out. She is 8 years now and still has no g-tube. She still has an up and down eating pattern but continues to gain weight. She doesn't like sour cream, cream cheese, butter etc. but loves carrots, peas, asparagus, salad. So the rest of the family is overweight-we eat the other stuff. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 , Hi my name is Greg I was diagnoised in June 2008 with Neurosarcoidosis. I have an appt. at UTSW (University of Texas SW) on 04-08-09. They have done lots of work on sarcoidosis. If I find they have successful treatments then I will be happy to share the results with you everybody in the group. Until then I wish you evrybody elesed Blessed and pain-free days. Greg > > hi everyone thank you for letting in to the group i actually thought i was alone in this world with a rare case of neurosarcoidosis. I live in the US and i was diagnosed around year 2000. devastated but i handled it but it has been going up and down since then treatment works until they tamper me off the steroids and everything flares up with damaging results. the latest is seizure three back to back. Now i really can't do anything not even work or live alone. If anybody knows a treatment that's been successful can you please let me know. > Quote Link to comment Share on other sites More sharing options...
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