2 Questions for parents

[anonymous]

Hello,

My son Sam is almost 1! Because he is growing like a week in height but slow on the actual weight chart, his CF doc. started him on whole milk and Pediasure. The good news is that he loves them and it has been an easy transition. OK, now the bad and my questions for you.

1. I am noticing the oil ring on his diapers and he is having 3 a day (used to have 1-2). Did any of you notice a change in stools when you made the switch to whole milk or Pediasure?

2. He was started on 3 Creon 5 a month ago. Do you think he should be getting 4 now? It seems like an awful lot....

3. He has had a wet cough for a week now. (My husband has been sick too and it is really going around our area.) No decrease in appetite or change in mood. His CF center said to up the PD. Could this cough be effecting his stools?

I would really appreciate any advice you have! This CF stuff is so stressful and lately everything with Sam has been awesome! Just to now hear he is a low percentile is stressful and now he is having all these smelly, looser stools I am getting so nervous!!!

Thanks,
Carrie Mom to Sam

 

[anonymous]

Hello,

My son Sam is almost 1! Because he is growing like a week in height but slow on the actual weight chart, his CF doc. started him on whole milk and Pediasure. The good news is that he loves them and it has been an easy transition. OK, now the bad and my questions for you.

1. I am noticing the oil ring on his diapers and he is having 3 a day (used to have 1-2). Did any of you notice a change in stools when you made the switch to whole milk or Pediasure?

2. He was started on 3 Creon 5 a month ago. Do you think he should be getting 4 now? It seems like an awful lot....

3. He has had a wet cough for a week now. (My husband has been sick too and it is really going around our area.) No decrease in appetite or change in mood. His CF center said to up the PD. Could this cough be effecting his stools?

I would really appreciate any advice you have! This CF stuff is so stressful and lately everything with Sam has been awesome! Just to now hear he is a low percentile is stressful and now he is having all these smelly, looser stools I am getting so nervous!!!

Thanks,
Carrie Mom to Sam

 

[anonymous]

Hello,

My son Sam is almost 1! Because he is growing like a week in height but slow on the actual weight chart, his CF doc. started him on whole milk and Pediasure. The good news is that he loves them and it has been an easy transition. OK, now the bad and my questions for you.

1. I am noticing the oil ring on his diapers and he is having 3 a day (used to have 1-2). Did any of you notice a change in stools when you made the switch to whole milk or Pediasure?

2. He was started on 3 Creon 5 a month ago. Do you think he should be getting 4 now? It seems like an awful lot....

3. He has had a wet cough for a week now. (My husband has been sick too and it is really going around our area.) No decrease in appetite or change in mood. His CF center said to up the PD. Could this cough be effecting his stools?

I would really appreciate any advice you have! This CF stuff is so stressful and lately everything with Sam has been awesome! Just to now hear he is a low percentile is stressful and now he is having all these smelly, looser stools I am getting so nervous!!!

Thanks,
Carrie Mom to Sam

 

[folione]

When my son w/CF (now 3) was 1 year old, I believe 2-3 stools per day was about normal. Fat content of diet definitely has an effect and it can take a while to get enzymes and food balanced - I'd make a call to the CF doctor to ask how long to stick with the routine before changing anything. My son's doctor set an upper limit on the number of enzymes per meal and we adjust within that limit based on how much he eats and how fatty it is. Does your son take any antacid such as zantac? My son had bad reflux and still takes zantac because the CF dr. says it helps normalize stomach pH which in turn makes the enzymes work better.

As for the cough, teething can also be a big factor in coughing at that age - my boy routinely had post-nasal drip when teething, especially the molars. I'd bet all that extra mucus going down to the stomach could show up in stool texture.

Finally, about those weight/height charts: we spent most of the first year or so stressed out about it because 10-25% on weight was the best our boy could do for a long time. Eventually we settled into where we did not worry about it so long as he was eating and happy. He was also only around 50-75% on height so when they were combined on the proportional chart he sounded better than just looking at weight. Still, I understand the stressing about it; hang in there. By sometime close to his 3rd birthday he finally hit the 50% mark and we all hugged the nutritionist.

 

[folione]

When my son w/CF (now 3) was 1 year old, I believe 2-3 stools per day was about normal. Fat content of diet definitely has an effect and it can take a while to get enzymes and food balanced - I'd make a call to the CF doctor to ask how long to stick with the routine before changing anything. My son's doctor set an upper limit on the number of enzymes per meal and we adjust within that limit based on how much he eats and how fatty it is. Does your son take any antacid such as zantac? My son had bad reflux and still takes zantac because the CF dr. says it helps normalize stomach pH which in turn makes the enzymes work better.

As for the cough, teething can also be a big factor in coughing at that age - my boy routinely had post-nasal drip when teething, especially the molars. I'd bet all that extra mucus going down to the stomach could show up in stool texture.

Finally, about those weight/height charts: we spent most of the first year or so stressed out about it because 10-25% on weight was the best our boy could do for a long time. Eventually we settled into where we did not worry about it so long as he was eating and happy. He was also only around 50-75% on height so when they were combined on the proportional chart he sounded better than just looking at weight. Still, I understand the stressing about it; hang in there. By sometime close to his 3rd birthday he finally hit the 50% mark and we all hugged the nutritionist.

 

[folione]

When my son w/CF (now 3) was 1 year old, I believe 2-3 stools per day was about normal. Fat content of diet definitely has an effect and it can take a while to get enzymes and food balanced - I'd make a call to the CF doctor to ask how long to stick with the routine before changing anything. My son's doctor set an upper limit on the number of enzymes per meal and we adjust within that limit based on how much he eats and how fatty it is. Does your son take any antacid such as zantac? My son had bad reflux and still takes zantac because the CF dr. says it helps normalize stomach pH which in turn makes the enzymes work better.

As for the cough, teething can also be a big factor in coughing at that age - my boy routinely had post-nasal drip when teething, especially the molars. I'd bet all that extra mucus going down to the stomach could show up in stool texture.

Finally, about those weight/height charts: we spent most of the first year or so stressed out about it because 10-25% on weight was the best our boy could do for a long time. Eventually we settled into where we did not worry about it so long as he was eating and happy. He was also only around 50-75% on height so when they were combined on the proportional chart he sounded better than just looking at weight. Still, I understand the stressing about it; hang in there. By sometime close to his 3rd birthday he finally hit the 50% mark and we all hugged the nutritionist.

 

[JRPandTJP]

Were you breastfeeding or formula feeding? If formula, was it milk-based (predigested)? Straight milk is a very difficult protein for the body to digest (especially little ones). It can cause inflammation in the body (particularly the gut) which can increase mucus responses. It can be quite irritating to the system. The increase in these proteins can really throw things off for a while.

I would add a probiotic (like culturelle or Kid Dophilous) to his regimen once daily. It will build up good bacteria and reduce inflammation in the gut. Perhaps back off on using only milk and Pedisure as a primary source of calories and vary the protein sources a bit (soy or rice). You can try soy yogurts/cheeses, lunch meats, white beans mashed up with olive oil and salt, rice milk with rice protein powder and a bit of oil added (to equal the whole milk), and many other tricks.

There is research that shows high protein drinks do not actually add weight in CF <a target=_blank class=ftalternatingbarlinklarge href="http://bmj.bmjjournals.com/cgi/content/full/bmj;332/7542/632.">http://bmj.bmjjournals.com/cgi...full/bmj;332/7542/632.</a> My theory is there is only so much protein/fat a body can digest and overloading their system with too much produces a negative response in the digestive system causing inflammation and poor digestion. Another study found this <a target=_blank class=ftalternatingbarlinklarge href="http://www.jpgn.org/pt/re/jpgn/fulltext.00005176-200505000-00253.htm;jsessionid=FYjbNJL1DjNLLBppzQ9YWkWnQsZjLscXmpknDsGkxWvj5HQhKpDK!1513079044!-949856145!8091!-1
">http://www.jpgn.org/pt/re/jpgn...44!-949856145!8091!-1
</a>
Bottom line is using high calorie drinks can often overload the system. This was our experience even when we tried to add too much soy (our son can't do dairy at all). It can also fill them up before meals causing them to eat less food in the 2nd year and rely too much on drinking as a way to fill up. As they get closer to 18 months, I believe eating 5-6 small meals a day with a protein, complex carb, and fruit or veggie at each meal with a little high calorie beverage or water after they've eaten can be a great strategy. No drinking in between meals helped our son eat more.

Our son was in the 10-20% until around 15-18 months when he took off. He still can't do dairy but I think it may be a blessing in disguise. I wasn't worried because he had alot of catching up to do, due to being undiagnosed and he was so healthy and vibrant. Don't let them freak you out too bad about the weight (unless he is loosing or not gaining at all...look for a solid growth curve...his growth curve).

Hope some of these ideas help...it is worth a try. Best of luck to you.

Warmly,
Jody

 

[JRPandTJP]

Were you breastfeeding or formula feeding? If formula, was it milk-based (predigested)? Straight milk is a very difficult protein for the body to digest (especially little ones). It can cause inflammation in the body (particularly the gut) which can increase mucus responses. It can be quite irritating to the system. The increase in these proteins can really throw things off for a while.

I would add a probiotic (like culturelle or Kid Dophilous) to his regimen once daily. It will build up good bacteria and reduce inflammation in the gut. Perhaps back off on using only milk and Pedisure as a primary source of calories and vary the protein sources a bit (soy or rice). You can try soy yogurts/cheeses, lunch meats, white beans mashed up with olive oil and salt, rice milk with rice protein powder and a bit of oil added (to equal the whole milk), and many other tricks.

There is research that shows high protein drinks do not actually add weight in CF <a target=_blank class=ftalternatingbarlinklarge href="http://bmj.bmjjournals.com/cgi/content/full/bmj;332/7542/632.">http://bmj.bmjjournals.com/cgi...full/bmj;332/7542/632.</a> My theory is there is only so much protein/fat a body can digest and overloading their system with too much produces a negative response in the digestive system causing inflammation and poor digestion. Another study found this <a target=_blank class=ftalternatingbarlinklarge href="http://www.jpgn.org/pt/re/jpgn/fulltext.00005176-200505000-00253.htm;jsessionid=FYjbNJL1DjNLLBppzQ9YWkWnQsZjLscXmpknDsGkxWvj5HQhKpDK!1513079044!-949856145!8091!-1
">http://www.jpgn.org/pt/re/jpgn...44!-949856145!8091!-1
</a>
Bottom line is using high calorie drinks can often overload the system. This was our experience even when we tried to add too much soy (our son can't do dairy at all). It can also fill them up before meals causing them to eat less food in the 2nd year and rely too much on drinking as a way to fill up. As they get closer to 18 months, I believe eating 5-6 small meals a day with a protein, complex carb, and fruit or veggie at each meal with a little high calorie beverage or water after they've eaten can be a great strategy. No drinking in between meals helped our son eat more.

Our son was in the 10-20% until around 15-18 months when he took off. He still can't do dairy but I think it may be a blessing in disguise. I wasn't worried because he had alot of catching up to do, due to being undiagnosed and he was so healthy and vibrant. Don't let them freak you out too bad about the weight (unless he is loosing or not gaining at all...look for a solid growth curve...his growth curve).

Hope some of these ideas help...it is worth a try. Best of luck to you.

Warmly,
Jody

 

[JRPandTJP]

Were you breastfeeding or formula feeding? If formula, was it milk-based (predigested)? Straight milk is a very difficult protein for the body to digest (especially little ones). It can cause inflammation in the body (particularly the gut) which can increase mucus responses. It can be quite irritating to the system. The increase in these proteins can really throw things off for a while.

I would add a probiotic (like culturelle or Kid Dophilous) to his regimen once daily. It will build up good bacteria and reduce inflammation in the gut. Perhaps back off on using only milk and Pedisure as a primary source of calories and vary the protein sources a bit (soy or rice). You can try soy yogurts/cheeses, lunch meats, white beans mashed up with olive oil and salt, rice milk with rice protein powder and a bit of oil added (to equal the whole milk), and many other tricks.

There is research that shows high protein drinks do not actually add weight in CF <a target=_blank class=ftalternatingbarlinklarge href="http://bmj.bmjjournals.com/cgi/content/full/bmj;332/7542/632.">http://bmj.bmjjournals.com/cgi...full/bmj;332/7542/632.</a> My theory is there is only so much protein/fat a body can digest and overloading their system with too much produces a negative response in the digestive system causing inflammation and poor digestion. Another study found this <a target=_blank class=ftalternatingbarlinklarge href="http://www.jpgn.org/pt/re/jpgn/fulltext.00005176-200505000-00253.htm;jsessionid=FYjbNJL1DjNLLBppzQ9YWkWnQsZjLscXmpknDsGkxWvj5HQhKpDK!1513079044!-949856145!8091!-1
">http://www.jpgn.org/pt/re/jpgn...44!-949856145!8091!-1
</a>
Bottom line is using high calorie drinks can often overload the system. This was our experience even when we tried to add too much soy (our son can't do dairy at all). It can also fill them up before meals causing them to eat less food in the 2nd year and rely too much on drinking as a way to fill up. As they get closer to 18 months, I believe eating 5-6 small meals a day with a protein, complex carb, and fruit or veggie at each meal with a little high calorie beverage or water after they've eaten can be a great strategy. No drinking in between meals helped our son eat more.

Our son was in the 10-20% until around 15-18 months when he took off. He still can't do dairy but I think it may be a blessing in disguise. I wasn't worried because he had alot of catching up to do, due to being undiagnosed and he was so healthy and vibrant. Don't let them freak you out too bad about the weight (unless he is loosing or not gaining at all...look for a solid growth curve...his growth curve).

Hope some of these ideas help...it is worth a try. Best of luck to you.

Warmly,
Jody

 

[amber682]

<div class="FTQUOTE"><begin quote>1. I am noticing the oil ring on his diapers and he is having 3 a day (used to have 1-2). Did any of you notice a change in stools when you made the switch to whole milk or Pediasure? </end quote></div>

My son switched from formula (made high calorie with extra powder added) to pediasure at a year old, and there was no change in his stools due to it. But, around this time he was put on 3 Creon instead of 2.

<div class="FTQUOTE"><begin quote>2. He was started on 3 Creon 5 a month ago. Do you think he should be getting 4 now? It seems like an awful lot.... </end quote></div>

My son is on 3 Creon 10 now, and docs talked about adding one more at next visit next month. I'm not positive, but I'm pretty sure he was on the same amount he is now at a year old. If the stool is oily and more frequent, it sounds like the Creon needs to go up.

<div class="FTQUOTE"><begin quote>3. He has had a wet cough for a week now. (My husband has been sick too and it is really going around our area.) No decrease in appetite or change in mood. His CF center said to up the PD. Could this cough be effecting his stools? </end quote></div>

In my opinion, the cough wouldn't make the stools worse. My son battled a cough with no other symptoms at all for a couple months also, trying various meds to kick it. It turned out to be something new he cultured.

It sounds like he simply needs some more enzymes and the stools should get better. The Pediasure may have more fat than he's used to, plus he's getting a little older and bigger, so he might need more Creon. If the cough doesn't clear up though, I'd see the doc. Once he's absorbing his fats better, maybe his percentile will go up a little.

I so know how you feel, my son is only about 6 months older than yours, he had a mysterios cough with no other symptoms, and his percentile was dropping. He usually gains weight steadily, but then he didn't gain any in quite a few months. He was using energy to battle an infection instead of putting on weight. Plus they did a fecal fat test, and he's not absorbing enough fat, so his Creon will most likely go up. But since we've kicked the infection about a month ago he's gained a couple pounds, and hopefully will gain more when the Creon goes up.

Hope this was some help, funny how similar our boy's situations seem to be right now.

 

[amber682]

<div class="FTQUOTE"><begin quote>1. I am noticing the oil ring on his diapers and he is having 3 a day (used to have 1-2). Did any of you notice a change in stools when you made the switch to whole milk or Pediasure? </end quote></div>

My son switched from formula (made high calorie with extra powder added) to pediasure at a year old, and there was no change in his stools due to it. But, around this time he was put on 3 Creon instead of 2.

<div class="FTQUOTE"><begin quote>2. He was started on 3 Creon 5 a month ago. Do you think he should be getting 4 now? It seems like an awful lot.... </end quote></div>

My son is on 3 Creon 10 now, and docs talked about adding one more at next visit next month. I'm not positive, but I'm pretty sure he was on the same amount he is now at a year old. If the stool is oily and more frequent, it sounds like the Creon needs to go up.

<div class="FTQUOTE"><begin quote>3. He has had a wet cough for a week now. (My husband has been sick too and it is really going around our area.) No decrease in appetite or change in mood. His CF center said to up the PD. Could this cough be effecting his stools? </end quote></div>

In my opinion, the cough wouldn't make the stools worse. My son battled a cough with no other symptoms at all for a couple months also, trying various meds to kick it. It turned out to be something new he cultured.

It sounds like he simply needs some more enzymes and the stools should get better. The Pediasure may have more fat than he's used to, plus he's getting a little older and bigger, so he might need more Creon. If the cough doesn't clear up though, I'd see the doc. Once he's absorbing his fats better, maybe his percentile will go up a little.

I so know how you feel, my son is only about 6 months older than yours, he had a mysterios cough with no other symptoms, and his percentile was dropping. He usually gains weight steadily, but then he didn't gain any in quite a few months. He was using energy to battle an infection instead of putting on weight. Plus they did a fecal fat test, and he's not absorbing enough fat, so his Creon will most likely go up. But since we've kicked the infection about a month ago he's gained a couple pounds, and hopefully will gain more when the Creon goes up.

Hope this was some help, funny how similar our boy's situations seem to be right now.

 

[amber682]

<div class="FTQUOTE"><begin quote>1. I am noticing the oil ring on his diapers and he is having 3 a day (used to have 1-2). Did any of you notice a change in stools when you made the switch to whole milk or Pediasure? </end quote></div>

My son switched from formula (made high calorie with extra powder added) to pediasure at a year old, and there was no change in his stools due to it. But, around this time he was put on 3 Creon instead of 2.

<div class="FTQUOTE"><begin quote>2. He was started on 3 Creon 5 a month ago. Do you think he should be getting 4 now? It seems like an awful lot.... </end quote></div>

My son is on 3 Creon 10 now, and docs talked about adding one more at next visit next month. I'm not positive, but I'm pretty sure he was on the same amount he is now at a year old. If the stool is oily and more frequent, it sounds like the Creon needs to go up.

<div class="FTQUOTE"><begin quote>3. He has had a wet cough for a week now. (My husband has been sick too and it is really going around our area.) No decrease in appetite or change in mood. His CF center said to up the PD. Could this cough be effecting his stools? </end quote></div>

In my opinion, the cough wouldn't make the stools worse. My son battled a cough with no other symptoms at all for a couple months also, trying various meds to kick it. It turned out to be something new he cultured.

It sounds like he simply needs some more enzymes and the stools should get better. The Pediasure may have more fat than he's used to, plus he's getting a little older and bigger, so he might need more Creon. If the cough doesn't clear up though, I'd see the doc. Once he's absorbing his fats better, maybe his percentile will go up a little.

I so know how you feel, my son is only about 6 months older than yours, he had a mysterios cough with no other symptoms, and his percentile was dropping. He usually gains weight steadily, but then he didn't gain any in quite a few months. He was using energy to battle an infection instead of putting on weight. Plus they did a fecal fat test, and he's not absorbing enough fat, so his Creon will most likely go up. But since we've kicked the infection about a month ago he's gained a couple pounds, and hopefully will gain more when the Creon goes up.

Hope this was some help, funny how similar our boy's situations seem to be right now.

 

[scarbrough]

I agree with everything said by previous replies..our docs are fine with me adjusting Hannah's enzymes..I just pay close attention to fatty, oily, strong odor stools..you can adjust by 1/4 to 1/2 of an enzyme....you may want to discuss this with your docs first...also, when Hannah has a cold she seems to have more probs with digesting fat...remember to use applesauce..anything else for Hannah seems to make fat absorbtion worse..she has also been teething(molars) and has had a runny nose for about 1 month..Are you using a nebulizer? Hannah has more drainage then, too. On top of change of seasons..she just has no chance of drainage free..Zantac does help her.....she is also on Zrytec...Hope this helps you!

 

[scarbrough]

I agree with everything said by previous replies..our docs are fine with me adjusting Hannah's enzymes..I just pay close attention to fatty, oily, strong odor stools..you can adjust by 1/4 to 1/2 of an enzyme....you may want to discuss this with your docs first...also, when Hannah has a cold she seems to have more probs with digesting fat...remember to use applesauce..anything else for Hannah seems to make fat absorbtion worse..she has also been teething(molars) and has had a runny nose for about 1 month..Are you using a nebulizer? Hannah has more drainage then, too. On top of change of seasons..she just has no chance of drainage free..Zantac does help her.....she is also on Zrytec...Hope this helps you!

 

[scarbrough]

I agree with everything said by previous replies..our docs are fine with me adjusting Hannah's enzymes..I just pay close attention to fatty, oily, strong odor stools..you can adjust by 1/4 to 1/2 of an enzyme....you may want to discuss this with your docs first...also, when Hannah has a cold she seems to have more probs with digesting fat...remember to use applesauce..anything else for Hannah seems to make fat absorbtion worse..she has also been teething(molars) and has had a runny nose for about 1 month..Are you using a nebulizer? Hannah has more drainage then, too. On top of change of seasons..she just has no chance of drainage free..Zantac does help her.....she is also on Zrytec...Hope this helps you!