How are her stools? Are they normal looking or are they loose, greenish yellow, bulky and frequent. I'm sure you're already doing this, but I add olive oil and butter to DS' pasta. He gets whole milk, carnation instant breakfast made with whole milk and cream. When he has cereal I put a healthy dollop of cream in it. Greek style yogurt...
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Still not putting on weight after 9 months of enzymes
- Thread starter stringbean
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How are her stools? Are they normal looking or are they loose, greenish yellow, bulky and frequent. I'm sure you're already doing this, but I add olive oil and butter to DS' pasta. He gets whole milk, carnation instant breakfast made with whole milk and cream. When he has cereal I put a healthy dollop of cream in it. Greek style yogurt...
How are her stools? Are they normal looking or are they loose, greenish yellow, bulky and frequent. I'm sure you're already doing this, but I add olive oil and butter to DS' pasta. He gets whole milk, carnation instant breakfast made with whole milk and cream. When he has cereal I put a healthy dollop of cream in it. Greek style yogurt...
How are her stools? Are they normal looking or are they loose, greenish yellow, bulky and frequent. I'm sure you're already doing this, but I add olive oil and butter to DS' pasta. He gets whole milk, carnation instant breakfast made with whole milk and cream. When he has cereal I put a healthy dollop of cream in it. Greek style yogurt...
How are her stools? Are they normal looking or are they loose, greenish yellow, bulky and frequent. I'm sure you're already doing this, but I add olive oil and butter to DS' pasta. He gets whole milk, carnation instant breakfast made with whole milk and cream. When he has cereal I put a healthy dollop of cream in it. Greek style yogurt...
stringbean
New member
Taking her off of white flour was kind of a lark -- I got that cookbook, <a target=_blank class=ftalternatingbarlinklarge href="http://www.thesneakychef.com/">Sneaky Chef</a>, that uses vegetable and fruit purees. She actually loves fruits and veggies, but I figured that if I could pack her "empty calories" with nutritients, it could only help her out. The recipes use whole wheat, wheat germ, oatmeal, etc. And I make sure to use whole milk (or cream) rather than the skim milk so that I can keep the calorie count up. Until I reduced the sugar and white flour, I never even noticed that it affected her.
In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
stringbean
New member
Taking her off of white flour was kind of a lark -- I got that cookbook, <a target=_blank class=ftalternatingbarlinklarge href="http://www.thesneakychef.com/">Sneaky Chef</a>, that uses vegetable and fruit purees. She actually loves fruits and veggies, but I figured that if I could pack her "empty calories" with nutritients, it could only help her out. The recipes use whole wheat, wheat germ, oatmeal, etc. And I make sure to use whole milk (or cream) rather than the skim milk so that I can keep the calorie count up. Until I reduced the sugar and white flour, I never even noticed that it affected her.
In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
stringbean
New member
Taking her off of white flour was kind of a lark -- I got that cookbook, <a target=_blank class=ftalternatingbarlinklarge href="http://www.thesneakychef.com/">Sneaky Chef</a>, that uses vegetable and fruit purees. She actually loves fruits and veggies, but I figured that if I could pack her "empty calories" with nutritients, it could only help her out. The recipes use whole wheat, wheat germ, oatmeal, etc. And I make sure to use whole milk (or cream) rather than the skim milk so that I can keep the calorie count up. Until I reduced the sugar and white flour, I never even noticed that it affected her.
In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
stringbean
New member
Taking her off of white flour was kind of a lark -- I got that cookbook, <a target=_blank class=ftalternatingbarlinklarge href="http://www.thesneakychef.com/">Sneaky Chef</a>, that uses vegetable and fruit purees. She actually loves fruits and veggies, but I figured that if I could pack her "empty calories" with nutritients, it could only help her out. The recipes use whole wheat, wheat germ, oatmeal, etc. And I make sure to use whole milk (or cream) rather than the skim milk so that I can keep the calorie count up. Until I reduced the sugar and white flour, I never even noticed that it affected her.
In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
stringbean
New member
Taking her off of white flour was kind of a lark -- I got that cookbook, <a target=_blank class=ftalternatingbarlinklarge href="http://www.thesneakychef.com/">Sneaky Chef</a>, that uses vegetable and fruit purees. She actually loves fruits and veggies, but I figured that if I could pack her "empty calories" with nutritients, it could only help her out. The recipes use whole wheat, wheat germ, oatmeal, etc. And I make sure to use whole milk (or cream) rather than the skim milk so that I can keep the calorie count up. Until I reduced the sugar and white flour, I never even noticed that it affected her.
<br />
<br />In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
<br />
<br />The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
<br />
<br />His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
<br />
<br />We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
<br />
<br />
<br />
<br />In Sept, we saw the head of the CF Clinic for a second opinion, since the first pulmonologist said no way she has CF, just some asthma, swollen sinuses, and PI. This pulmonologist said she is in the CRMA category (can't remember what it stands for -- it covers the people with borderline test results and symptoms, as well as those with 2 mutations and no symptoms.) We saw her gastro doc a month ago and I asked him if he was comfortable with CF as an explanation for her PI. He said "yes -- for now." But he asked us to come back in six weeks and said if she hasn't increased her BMI substantially, he was going to consider that something more is going on. I know our home scale isn't as accurate as the hospital, but I can at least track trends. She's increased her weight .03 in four weeks and grown a quarter inch. That keeps her BMI pretty much unchanged...
<br />
<br />The gastro doc wanted her to clear out her system on ex-lax, then miralax so that she can produce two soft poops a day. We've been doing miralax for four weeks and she's going at least twice a day, but it <i>still</i> hurts. Between the pain and the reaction to sugar, I hope that tells him something. I just keep thinking that I'm missing some vital clue that if only I mentioned it to him, he'd have an answer for us!
<br />
<br />His concern is exactly what Harriet was mentioning... Should she get sick this winter, she could lose a lot of weight and she doesn't have an ounce to spare. In winter, she tends to get a lot of sinus drainage, maybe an ear infection, and throat clearing, but she's good so far. She hasn't had any respitory problems in awhile. Then again, last spring she showed no signs of respitory problems, but her lung x-ray showed some problems...
<br />
<br />We were able to get a flu shot and at least one half of the H1N1 (our pediatrician is FABULOUS -- she called us the moment their supply came in.) The question is whether they will still have any when she needs the second shot in another week. Phew! I'm so relieved that we could get these shots!
<br />
<br />
S
sdelorenzo
Guest
My daughter is also 8. Two years ago when she was five and 37 pounds, she got a feeding tube. She was eating the required amount of calories but couldn't gain weight. What a blessing the g-tube has been. She was -5% bmi and she is now 62 pounds and 60% bmi. She only gets supplemental feeding at night and we never think about it until she gets into bed. It honestly is so easy and it incredible to see her chunky after 5 years of having a really thin child.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
S
sdelorenzo
Guest
My daughter is also 8. Two years ago when she was five and 37 pounds, she got a feeding tube. She was eating the required amount of calories but couldn't gain weight. What a blessing the g-tube has been. She was -5% bmi and she is now 62 pounds and 60% bmi. She only gets supplemental feeding at night and we never think about it until she gets into bed. It honestly is so easy and it incredible to see her chunky after 5 years of having a really thin child.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
S
sdelorenzo
Guest
My daughter is also 8. Two years ago when she was five and 37 pounds, she got a feeding tube. She was eating the required amount of calories but couldn't gain weight. What a blessing the g-tube has been. She was -5% bmi and she is now 62 pounds and 60% bmi. She only gets supplemental feeding at night and we never think about it until she gets into bed. It honestly is so easy and it incredible to see her chunky after 5 years of having a really thin child.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
S
sdelorenzo
Guest
My daughter is also 8. Two years ago when she was five and 37 pounds, she got a feeding tube. She was eating the required amount of calories but couldn't gain weight. What a blessing the g-tube has been. She was -5% bmi and she is now 62 pounds and 60% bmi. She only gets supplemental feeding at night and we never think about it until she gets into bed. It honestly is so easy and it incredible to see her chunky after 5 years of having a really thin child.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
S
sdelorenzo
Guest
My daughter is also 8. Two years ago when she was five and 37 pounds, she got a feeding tube. She was eating the required amount of calories but couldn't gain weight. What a blessing the g-tube has been. She was -5% bmi and she is now 62 pounds and 60% bmi. She only gets supplemental feeding at night and we never think about it until she gets into bed. It honestly is so easy and it incredible to see her chunky after 5 years of having a really thin child.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
<br />
<br />
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf
<br />
<br />