Just a few questions

[kate620]

The other day was my daughter's 3 mo ck up at the CF doc. I had some concerns regarding her stomach problems. She always complains of her tummy hurting and from what I've noticed from reading other peoples tummy problems is that it is related to enzymes but my daughter is pancreatic sufficient. But she needs Miralax every day to not be constipated. Her doc said that the constipation has nothing to do with cf and that some kids are just naturally constipated. She is also very small for her age, like someone that would need enzymes. She was a big ol baby til around 2yr old and when she went in for her ck up, that's when her pedi suggested she might have cf due to failure to thrive. But if she absorbs her fats then why is she so little? Couldn't the mucus still affect her tummy too? I asked the doc that since there aren't that many people with cf that are pan suff that maybe there's not enough studies done on it to know if it would cause constipation and she said it was possible. Does anyone know about this?

Also, it concerned me that she told me there was no reason for Makailyn to miss school due to cf. She said that because her lung functions are good and that kids that have 50% lung function go to school every day that there's no reason for Makailyn to miss. 50%!! Could that be right? And what about the fact that she has pseudemonas and staph? Doesn't that tire her body trying to fight those bugs? Or all the treatments before and after school, being at school all day,tummy hurting, up all through the night sometimes coughing up mucus, etc,etc. And the way she said it, really stern, like I'm some kind of unfit mother that just lets her stay home for no reason. It really bothered me. I mean, I difinately want Makailyn to have a "normal" life but I don't want to make her worse by pushing her to do too much. Well, thanks for "listening". Any advice is definately appreciated.

<img src="http://i426.photobucket.com/albums/pp350/katie620_01/073-1.jpg">

 

[kate620]

The other day was my daughter's 3 mo ck up at the CF doc. I had some concerns regarding her stomach problems. She always complains of her tummy hurting and from what I've noticed from reading other peoples tummy problems is that it is related to enzymes but my daughter is pancreatic sufficient. But she needs Miralax every day to not be constipated. Her doc said that the constipation has nothing to do with cf and that some kids are just naturally constipated. She is also very small for her age, like someone that would need enzymes. She was a big ol baby til around 2yr old and when she went in for her ck up, that's when her pedi suggested she might have cf due to failure to thrive. But if she absorbs her fats then why is she so little? Couldn't the mucus still affect her tummy too? I asked the doc that since there aren't that many people with cf that are pan suff that maybe there's not enough studies done on it to know if it would cause constipation and she said it was possible. Does anyone know about this?

Also, it concerned me that she told me there was no reason for Makailyn to miss school due to cf. She said that because her lung functions are good and that kids that have 50% lung function go to school every day that there's no reason for Makailyn to miss. 50%!! Could that be right? And what about the fact that she has pseudemonas and staph? Doesn't that tire her body trying to fight those bugs? Or all the treatments before and after school, being at school all day,tummy hurting, up all through the night sometimes coughing up mucus, etc,etc. And the way she said it, really stern, like I'm some kind of unfit mother that just lets her stay home for no reason. It really bothered me. I mean, I difinately want Makailyn to have a "normal" life but I don't want to make her worse by pushing her to do too much. Well, thanks for "listening". Any advice is definately appreciated.

<img src="http://i426.photobucket.com/albums/pp350/katie620_01/073-1.jpg">

 

[kate620]

The other day was my daughter's 3 mo ck up at the CF doc. I had some concerns regarding her stomach problems. She always complains of her tummy hurting and from what I've noticed from reading other peoples tummy problems is that it is related to enzymes but my daughter is pancreatic sufficient. But she needs Miralax every day to not be constipated. Her doc said that the constipation has nothing to do with cf and that some kids are just naturally constipated. She is also very small for her age, like someone that would need enzymes. She was a big ol baby til around 2yr old and when she went in for her ck up, that's when her pedi suggested she might have cf due to failure to thrive. But if she absorbs her fats then why is she so little? Couldn't the mucus still affect her tummy too? I asked the doc that since there aren't that many people with cf that are pan suff that maybe there's not enough studies done on it to know if it would cause constipation and she said it was possible. Does anyone know about this?

Also, it concerned me that she told me there was no reason for Makailyn to miss school due to cf. She said that because her lung functions are good and that kids that have 50% lung function go to school every day that there's no reason for Makailyn to miss. 50%!! Could that be right? And what about the fact that she has pseudemonas and staph? Doesn't that tire her body trying to fight those bugs? Or all the treatments before and after school, being at school all day,tummy hurting, up all through the night sometimes coughing up mucus, etc,etc. And the way she said it, really stern, like I'm some kind of unfit mother that just lets her stay home for no reason. It really bothered me. I mean, I difinately want Makailyn to have a "normal" life but I don't want to make her worse by pushing her to do too much. Well, thanks for "listening". Any advice is definately appreciated.

<img src="http://i426.photobucket.com/albums/pp350/katie620_01/073-1.jpg">

 

[kate620]

The other day was my daughter's 3 mo ck up at the CF doc. I had some concerns regarding her stomach problems. She always complains of her tummy hurting and from what I've noticed from reading other peoples tummy problems is that it is related to enzymes but my daughter is pancreatic sufficient. But she needs Miralax every day to not be constipated. Her doc said that the constipation has nothing to do with cf and that some kids are just naturally constipated. She is also very small for her age, like someone that would need enzymes. She was a big ol baby til around 2yr old and when she went in for her ck up, that's when her pedi suggested she might have cf due to failure to thrive. But if she absorbs her fats then why is she so little? Couldn't the mucus still affect her tummy too? I asked the doc that since there aren't that many people with cf that are pan suff that maybe there's not enough studies done on it to know if it would cause constipation and she said it was possible. Does anyone know about this?

Also, it concerned me that she told me there was no reason for Makailyn to miss school due to cf. She said that because her lung functions are good and that kids that have 50% lung function go to school every day that there's no reason for Makailyn to miss. 50%!! Could that be right? And what about the fact that she has pseudemonas and staph? Doesn't that tire her body trying to fight those bugs? Or all the treatments before and after school, being at school all day,tummy hurting, up all through the night sometimes coughing up mucus, etc,etc. And the way she said it, really stern, like I'm some kind of unfit mother that just lets her stay home for no reason. It really bothered me. I mean, I difinately want Makailyn to have a "normal" life but I don't want to make her worse by pushing her to do too much. Well, thanks for "listening". Any advice is definately appreciated.

<img src="http://i426.photobucket.com/albums/pp350/katie620_01/073-1.jpg">

 

[kate620]

The other day was my daughter's 3 mo ck up at the CF doc. I had some concerns regarding her stomach problems. She always complains of her tummy hurting and from what I've noticed from reading other peoples tummy problems is that it is related to enzymes but my daughter is pancreatic sufficient. But she needs Miralax every day to not be constipated. Her doc said that the constipation has nothing to do with cf and that some kids are just naturally constipated. She is also very small for her age, like someone that would need enzymes. She was a big ol baby til around 2yr old and when she went in for her ck up, that's when her pedi suggested she might have cf due to failure to thrive. But if she absorbs her fats then why is she so little? Couldn't the mucus still affect her tummy too? I asked the doc that since there aren't that many people with cf that are pan suff that maybe there's not enough studies done on it to know if it would cause constipation and she said it was possible. Does anyone know about this?
<br />
<br />Also, it concerned me that she told me there was no reason for Makailyn to miss school due to cf. She said that because her lung functions are good and that kids that have 50% lung function go to school every day that there's no reason for Makailyn to miss. 50%!! Could that be right? And what about the fact that she has pseudemonas and staph? Doesn't that tire her body trying to fight those bugs? Or all the treatments before and after school, being at school all day,tummy hurting, up all through the night sometimes coughing up mucus, etc,etc. And the way she said it, really stern, like I'm some kind of unfit mother that just lets her stay home for no reason. It really bothered me. I mean, I difinately want Makailyn to have a "normal" life but I don't want to make her worse by pushing her to do too much. Well, thanks for "listening". Any advice is definately appreciated.
<br />
<br /><img src="http://i426.photobucket.com/albums/pp350/katie620_01/073-1.jpg">

 

[Ratatosk]

Have they tested her stool for fat? A friend of mine has a granddaughter the same age, same mutation as DS, but she wasn't diagnosed until she was almost 2 and she had constipation issues whereas DS has the opposite problem.

Are they treating her pseudo and staph. I'm assuming she's on Tobi for the pseudo. What type of airway clearance does she do?

 

[Ratatosk]

Have they tested her stool for fat? A friend of mine has a granddaughter the same age, same mutation as DS, but she wasn't diagnosed until she was almost 2 and she had constipation issues whereas DS has the opposite problem.

Are they treating her pseudo and staph. I'm assuming she's on Tobi for the pseudo. What type of airway clearance does she do?

 

[Ratatosk]

Have they tested her stool for fat? A friend of mine has a granddaughter the same age, same mutation as DS, but she wasn't diagnosed until she was almost 2 and she had constipation issues whereas DS has the opposite problem.

Are they treating her pseudo and staph. I'm assuming she's on Tobi for the pseudo. What type of airway clearance does she do?

 

[Ratatosk]

Have they tested her stool for fat? A friend of mine has a granddaughter the same age, same mutation as DS, but she wasn't diagnosed until she was almost 2 and she had constipation issues whereas DS has the opposite problem.

Are they treating her pseudo and staph. I'm assuming she's on Tobi for the pseudo. What type of airway clearance does she do?

 

[Ratatosk]

Have they tested her stool for fat? A friend of mine has a granddaughter the same age, same mutation as DS, but she wasn't diagnosed until she was almost 2 and she had constipation issues whereas DS has the opposite problem.
<br />
<br />Are they treating her pseudo and staph. I'm assuming she's on Tobi for the pseudo. What type of airway clearance does she do?

 

[tammykrumrey]

Katie,

We were told that kids with CF do in fact suffer from constipation. This is b/c the stools can get bulky and they can get a little stopped up. My girls are both PI, and sometimes they do suffer constipation and need a few doses of Miralax to get things back in order.

Kayla has even needed an enemia during an ER visit, b/c she was in so much pain and we needed that stuff out of there! And normally her stools are VERY loose and I bet they have never been formed a single day in her life.

As for missing school...well Kayla and (very seldom) Hannah do miss school b/c of CF. Yes, I know of many kids with very low lung functions who attend school-b/c they love it! My nephew went to school with 50% lung function. He is 17 and quit school to get his GED and start college. His lung function is in the 40%s.

If one of the girls (normally it is Kayla) is up for a long time during the night coughing, then I do let her stay home the next day to get some much needed rest. Sometimes my girls suffer terrible stomach aches, and I let them stay home then too. I REALLY encourage them to go to school even when they don't feel 100% b/c I think it is very important, but I will let them stay home if they really feel it is needed.

Kayla cultures Staph, MRSA and B. Cepacia and Hannah cultures Staph and MRSA (and has cultured PA in the past). In our case, I don't see that the girls are more tired than there friends are. They keep up pretty well. When they start tiring out quicker, and when the cough increases, then I know they are having a flare up and we need to start antibiotics. In most cases, they attend school even during these flare ups. I just hate it when they have so much make up homework...it wears ME out<img src="i/expressions/face-icon-small-smile.gif" border="0">

Don't feel like an unfit mom. It sounds like you are trying to do the best for your daughter. What is your normal routine with Makailyn? And you said that she is still pretty little...what percentile is she in? I am a little surprised that she was PS, since failure to thrive is what sent her to be tested for CF in the first place. I would definately not think that were the case!

 

[tammykrumrey]

Katie,

We were told that kids with CF do in fact suffer from constipation. This is b/c the stools can get bulky and they can get a little stopped up. My girls are both PI, and sometimes they do suffer constipation and need a few doses of Miralax to get things back in order.

Kayla has even needed an enemia during an ER visit, b/c she was in so much pain and we needed that stuff out of there! And normally her stools are VERY loose and I bet they have never been formed a single day in her life.

As for missing school...well Kayla and (very seldom) Hannah do miss school b/c of CF. Yes, I know of many kids with very low lung functions who attend school-b/c they love it! My nephew went to school with 50% lung function. He is 17 and quit school to get his GED and start college. His lung function is in the 40%s.

If one of the girls (normally it is Kayla) is up for a long time during the night coughing, then I do let her stay home the next day to get some much needed rest. Sometimes my girls suffer terrible stomach aches, and I let them stay home then too. I REALLY encourage them to go to school even when they don't feel 100% b/c I think it is very important, but I will let them stay home if they really feel it is needed.

Kayla cultures Staph, MRSA and B. Cepacia and Hannah cultures Staph and MRSA (and has cultured PA in the past). In our case, I don't see that the girls are more tired than there friends are. They keep up pretty well. When they start tiring out quicker, and when the cough increases, then I know they are having a flare up and we need to start antibiotics. In most cases, they attend school even during these flare ups. I just hate it when they have so much make up homework...it wears ME out<img src="i/expressions/face-icon-small-smile.gif" border="0">

Don't feel like an unfit mom. It sounds like you are trying to do the best for your daughter. What is your normal routine with Makailyn? And you said that she is still pretty little...what percentile is she in? I am a little surprised that she was PS, since failure to thrive is what sent her to be tested for CF in the first place. I would definately not think that were the case!

 

[tammykrumrey]

Katie,

We were told that kids with CF do in fact suffer from constipation. This is b/c the stools can get bulky and they can get a little stopped up. My girls are both PI, and sometimes they do suffer constipation and need a few doses of Miralax to get things back in order.

Kayla has even needed an enemia during an ER visit, b/c she was in so much pain and we needed that stuff out of there! And normally her stools are VERY loose and I bet they have never been formed a single day in her life.

As for missing school...well Kayla and (very seldom) Hannah do miss school b/c of CF. Yes, I know of many kids with very low lung functions who attend school-b/c they love it! My nephew went to school with 50% lung function. He is 17 and quit school to get his GED and start college. His lung function is in the 40%s.

If one of the girls (normally it is Kayla) is up for a long time during the night coughing, then I do let her stay home the next day to get some much needed rest. Sometimes my girls suffer terrible stomach aches, and I let them stay home then too. I REALLY encourage them to go to school even when they don't feel 100% b/c I think it is very important, but I will let them stay home if they really feel it is needed.

Kayla cultures Staph, MRSA and B. Cepacia and Hannah cultures Staph and MRSA (and has cultured PA in the past). In our case, I don't see that the girls are more tired than there friends are. They keep up pretty well. When they start tiring out quicker, and when the cough increases, then I know they are having a flare up and we need to start antibiotics. In most cases, they attend school even during these flare ups. I just hate it when they have so much make up homework...it wears ME out<img src="i/expressions/face-icon-small-smile.gif" border="0">

Don't feel like an unfit mom. It sounds like you are trying to do the best for your daughter. What is your normal routine with Makailyn? And you said that she is still pretty little...what percentile is she in? I am a little surprised that she was PS, since failure to thrive is what sent her to be tested for CF in the first place. I would definately not think that were the case!

 

[tammykrumrey]

Katie,

We were told that kids with CF do in fact suffer from constipation. This is b/c the stools can get bulky and they can get a little stopped up. My girls are both PI, and sometimes they do suffer constipation and need a few doses of Miralax to get things back in order.

Kayla has even needed an enemia during an ER visit, b/c she was in so much pain and we needed that stuff out of there! And normally her stools are VERY loose and I bet they have never been formed a single day in her life.

As for missing school...well Kayla and (very seldom) Hannah do miss school b/c of CF. Yes, I know of many kids with very low lung functions who attend school-b/c they love it! My nephew went to school with 50% lung function. He is 17 and quit school to get his GED and start college. His lung function is in the 40%s.

If one of the girls (normally it is Kayla) is up for a long time during the night coughing, then I do let her stay home the next day to get some much needed rest. Sometimes my girls suffer terrible stomach aches, and I let them stay home then too. I REALLY encourage them to go to school even when they don't feel 100% b/c I think it is very important, but I will let them stay home if they really feel it is needed.

Kayla cultures Staph, MRSA and B. Cepacia and Hannah cultures Staph and MRSA (and has cultured PA in the past). In our case, I don't see that the girls are more tired than there friends are. They keep up pretty well. When they start tiring out quicker, and when the cough increases, then I know they are having a flare up and we need to start antibiotics. In most cases, they attend school even during these flare ups. I just hate it when they have so much make up homework...it wears ME out<img src="i/expressions/face-icon-small-smile.gif" border="0">

Don't feel like an unfit mom. It sounds like you are trying to do the best for your daughter. What is your normal routine with Makailyn? And you said that she is still pretty little...what percentile is she in? I am a little surprised that she was PS, since failure to thrive is what sent her to be tested for CF in the first place. I would definately not think that were the case!

 

[tammykrumrey]

Katie,
<br />
<br />We were told that kids with CF do in fact suffer from constipation. This is b/c the stools can get bulky and they can get a little stopped up. My girls are both PI, and sometimes they do suffer constipation and need a few doses of Miralax to get things back in order.
<br />
<br />Kayla has even needed an enemia during an ER visit, b/c she was in so much pain and we needed that stuff out of there! And normally her stools are VERY loose and I bet they have never been formed a single day in her life.
<br />
<br />As for missing school...well Kayla and (very seldom) Hannah do miss school b/c of CF. Yes, I know of many kids with very low lung functions who attend school-b/c they love it! My nephew went to school with 50% lung function. He is 17 and quit school to get his GED and start college. His lung function is in the 40%s.
<br />
<br />If one of the girls (normally it is Kayla) is up for a long time during the night coughing, then I do let her stay home the next day to get some much needed rest. Sometimes my girls suffer terrible stomach aches, and I let them stay home then too. I REALLY encourage them to go to school even when they don't feel 100% b/c I think it is very important, but I will let them stay home if they really feel it is needed.
<br />
<br />Kayla cultures Staph, MRSA and B. Cepacia and Hannah cultures Staph and MRSA (and has cultured PA in the past). In our case, I don't see that the girls are more tired than there friends are. They keep up pretty well. When they start tiring out quicker, and when the cough increases, then I know they are having a flare up and we need to start antibiotics. In most cases, they attend school even during these flare ups. I just hate it when they have so much make up homework...it wears ME out<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Don't feel like an unfit mom. It sounds like you are trying to do the best for your daughter. What is your normal routine with Makailyn? And you said that she is still pretty little...what percentile is she in? I am a little surprised that she was PS, since failure to thrive is what sent her to be tested for CF in the first place. I would definately not think that were the case!
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[JennyCoulon]

Maybe something else for them to check would be acid reflux. Both of my boys have this and have been treated since they were babies. Our oldest complained about 2 months ago that his tummmy hurt. We talked to the clinic and they ended up changing him from Prilosec to Prevacid and we haven't had a problem since.

As far as the lung infections we haven't had any of that, knock on wood. If they are feeling well enough to go to school and aren't contagious then we go ahead and send them. I would check on the relux and see what they say. Hope you find the answers.

 

[JennyCoulon]

Maybe something else for them to check would be acid reflux. Both of my boys have this and have been treated since they were babies. Our oldest complained about 2 months ago that his tummmy hurt. We talked to the clinic and they ended up changing him from Prilosec to Prevacid and we haven't had a problem since.

As far as the lung infections we haven't had any of that, knock on wood. If they are feeling well enough to go to school and aren't contagious then we go ahead and send them. I would check on the relux and see what they say. Hope you find the answers.

 

[JennyCoulon]

Maybe something else for them to check would be acid reflux. Both of my boys have this and have been treated since they were babies. Our oldest complained about 2 months ago that his tummmy hurt. We talked to the clinic and they ended up changing him from Prilosec to Prevacid and we haven't had a problem since.

As far as the lung infections we haven't had any of that, knock on wood. If they are feeling well enough to go to school and aren't contagious then we go ahead and send them. I would check on the relux and see what they say. Hope you find the answers.

 

[JennyCoulon]

Maybe something else for them to check would be acid reflux. Both of my boys have this and have been treated since they were babies. Our oldest complained about 2 months ago that his tummmy hurt. We talked to the clinic and they ended up changing him from Prilosec to Prevacid and we haven't had a problem since.

As far as the lung infections we haven't had any of that, knock on wood. If they are feeling well enough to go to school and aren't contagious then we go ahead and send them. I would check on the relux and see what they say. Hope you find the answers.

 

[JennyCoulon]

Maybe something else for them to check would be acid reflux. Both of my boys have this and have been treated since they were babies. Our oldest complained about 2 months ago that his tummmy hurt. We talked to the clinic and they ended up changing him from Prilosec to Prevacid and we haven't had a problem since.
<br />
<br />As far as the lung infections we haven't had any of that, knock on wood. If they are feeling well enough to go to school and aren't contagious then we go ahead and send them. I would check on the relux and see what they say. Hope you find the answers.