tummy problems

[rubiesmom]

Hello everybody, my 6yo daughter, Rubie, was diagnosed with CF three weeks ago. We are still waiting to get her into the CF center where we live. Shes been put her on pancreatic enzymes (MT4) to help her absorb more nutrients because shes so tiny(only 35lbs). Shes always had this problem with her tummy, when she eats it gets so big and very hard. I was under the impression that the enzymes would take that away. Does anyone else have this problem and does it ever go away? I dont where else to turn with my questions..and theres so many. I cant say that I really knew much about this evil disease untill my little ones recent dx. Now I've been reading everything I can find and it's so scary. I'm terrified for my her. I just want her to be healthy.
I"ve been reading alot on this site and my heart goes out to all of you, you're all fighters.
God Bless

mom to Rubie 6 (w/cf)

 

[rubiesmom]

Hello everybody, my 6yo daughter, Rubie, was diagnosed with CF three weeks ago. We are still waiting to get her into the CF center where we live. Shes been put her on pancreatic enzymes (MT4) to help her absorb more nutrients because shes so tiny(only 35lbs). Shes always had this problem with her tummy, when she eats it gets so big and very hard. I was under the impression that the enzymes would take that away. Does anyone else have this problem and does it ever go away? I dont where else to turn with my questions..and theres so many. I cant say that I really knew much about this evil disease untill my little ones recent dx. Now I've been reading everything I can find and it's so scary. I'm terrified for my her. I just want her to be healthy.
I"ve been reading alot on this site and my heart goes out to all of you, you're all fighters.
God Bless

mom to Rubie 6 (w/cf)

 

[rubiesmom]

Hello everybody, my 6yo daughter, Rubie, was diagnosed with CF three weeks ago. We are still waiting to get her into the CF center where we live. Shes been put her on pancreatic enzymes (MT4) to help her absorb more nutrients because shes so tiny(only 35lbs). Shes always had this problem with her tummy, when she eats it gets so big and very hard. I was under the impression that the enzymes would take that away. Does anyone else have this problem and does it ever go away? I dont where else to turn with my questions..and theres so many. I cant say that I really knew much about this evil disease untill my little ones recent dx. Now I've been reading everything I can find and it's so scary. I'm terrified for my her. I just want her to be healthy.
I"ve been reading alot on this site and my heart goes out to all of you, you're all fighters.
God Bless

mom to Rubie 6 (w/cf)

 

[izemmom]

Hi Rubie's Mom - I''m sorry I can't help with the tummy problem. We've not experienced that. I am glad that you are finally going to be getting help at the cf center...though I wonder, why the wait? That must be so frustrating. You are right, this is a scary disease. We are all in this together, and you are welcome to post any questions or fears you have. Someone will usually have answer. Good luck, and keep us posted.

 

[izemmom]

Hi Rubie's Mom - I''m sorry I can't help with the tummy problem. We've not experienced that. I am glad that you are finally going to be getting help at the cf center...though I wonder, why the wait? That must be so frustrating. You are right, this is a scary disease. We are all in this together, and you are welcome to post any questions or fears you have. Someone will usually have answer. Good luck, and keep us posted.

 

[izemmom]

Hi Rubie's Mom - I''m sorry I can't help with the tummy problem. We've not experienced that. I am glad that you are finally going to be getting help at the cf center...though I wonder, why the wait? That must be so frustrating. You are right, this is a scary disease. We are all in this together, and you are welcome to post any questions or fears you have. Someone will usually have answer. Good luck, and keep us posted.

 

[JazzysMom]

It is frustrating and scary especially when your little one is so uncomfortable. Until you get in try to push water (to help with any constipation & just plain flushing the system) and if she seems gassy maybe you could just try the baby drops for gas until you get things straightened out. Most of all just love her......Keep us updated!

 

[JazzysMom]

It is frustrating and scary especially when your little one is so uncomfortable. Until you get in try to push water (to help with any constipation & just plain flushing the system) and if she seems gassy maybe you could just try the baby drops for gas until you get things straightened out. Most of all just love her......Keep us updated!

 

[JazzysMom]

It is frustrating and scary especially when your little one is so uncomfortable. Until you get in try to push water (to help with any constipation & just plain flushing the system) and if she seems gassy maybe you could just try the baby drops for gas until you get things straightened out. Most of all just love her......Keep us updated!

 

[Rebjane]

It might be the enzyme dosage needs to be adjusted, getting the enzymes right can be tricky sometimes. My daughter sees a nutritionist and every 3 months we go over Maggie's weight, height, ezyme dosage, and what Maggie's poops look like. Also, the higher the fat content of the diet the more enzymes you need. Also, som,e CF kids are just prone to constipation. I give Maggie prune juice every day to keep things moving. Some kids need prescritpion meds to keep their bowels moving.

 

[Rebjane]

It might be the enzyme dosage needs to be adjusted, getting the enzymes right can be tricky sometimes. My daughter sees a nutritionist and every 3 months we go over Maggie's weight, height, ezyme dosage, and what Maggie's poops look like. Also, the higher the fat content of the diet the more enzymes you need. Also, som,e CF kids are just prone to constipation. I give Maggie prune juice every day to keep things moving. Some kids need prescritpion meds to keep their bowels moving.

 

[Rebjane]

It might be the enzyme dosage needs to be adjusted, getting the enzymes right can be tricky sometimes. My daughter sees a nutritionist and every 3 months we go over Maggie's weight, height, ezyme dosage, and what Maggie's poops look like. Also, the higher the fat content of the diet the more enzymes you need. Also, som,e CF kids are just prone to constipation. I give Maggie prune juice every day to keep things moving. Some kids need prescritpion meds to keep their bowels moving.

 

[Edna]

Hi Rubie's mom,

My 4yo daughter has not been diagnosed with CF yet, but she was diagnosed with pancreatic insuffiency at 2 and has been on enzymes since.

I know exactly what you are talking about! She has the same problem. Usually after she poops it will go down for a while and feel soft again. But, I know, bloated looking, hard to the touch and pitiful! I used to say she looked like one of the little malnourished kids in 3rd world countries on those "Feed the Children" infomercials.

So far, for her, the enzymes haven't changed that. She does sometimes have problems with constipation, and we use Miralax on occasion. That may help some.

Edna

 

[Edna]

Hi Rubie's mom,

My 4yo daughter has not been diagnosed with CF yet, but she was diagnosed with pancreatic insuffiency at 2 and has been on enzymes since.

I know exactly what you are talking about! She has the same problem. Usually after she poops it will go down for a while and feel soft again. But, I know, bloated looking, hard to the touch and pitiful! I used to say she looked like one of the little malnourished kids in 3rd world countries on those "Feed the Children" infomercials.

So far, for her, the enzymes haven't changed that. She does sometimes have problems with constipation, and we use Miralax on occasion. That may help some.

Edna

 

[Edna]

Hi Rubie's mom,

My 4yo daughter has not been diagnosed with CF yet, but she was diagnosed with pancreatic insuffiency at 2 and has been on enzymes since.

I know exactly what you are talking about! She has the same problem. Usually after she poops it will go down for a while and feel soft again. But, I know, bloated looking, hard to the touch and pitiful! I used to say she looked like one of the little malnourished kids in 3rd world countries on those "Feed the Children" infomercials.

So far, for her, the enzymes haven't changed that. She does sometimes have problems with constipation, and we use Miralax on occasion. That may help some.

Edna

 

[mtgreen30]

Hi, my son has the same problem also. He is 12 y/o he takes his enzymes with every meal and he is also on lactulos(poopy med) twice aday and he drinks a liter of nulytley(major poopy med) every week which he hates! Your daughter may need to be on a poopy med everyday until things get figured out. Good luck.

 

[mtgreen30]

Hi, my son has the same problem also. He is 12 y/o he takes his enzymes with every meal and he is also on lactulos(poopy med) twice aday and he drinks a liter of nulytley(major poopy med) every week which he hates! Your daughter may need to be on a poopy med everyday until things get figured out. Good luck.

 

[mtgreen30]

Hi, my son has the same problem also. He is 12 y/o he takes his enzymes with every meal and he is also on lactulos(poopy med) twice aday and he drinks a liter of nulytley(major poopy med) every week which he hates! Your daughter may need to be on a poopy med everyday until things get figured out. Good luck.

 

[jena]

From our personal experience I will provide a few other suggestions:
We took our son in to see a pediatric GI specialist (in the end, it really didn't help our situation, but it certainly didn't hurt. And at least I have a patient history with this doctor in case problems such as this resurface).
Taking Culturelle regularly (over the counter probiotic).
Getting a Miralax prescription.
Taking an occasional dose of Dulcolax.
Adjusting enzyme dosage. This is key. It sounds like maybe your daughter is taking too many enzymes. But it is also possible she is not taking enough. She may need to take prevacid along with her enzymes. Check the expiration date on the enzymes (and make sure they are NOT generic brand - YOUR doctor must specify the name brand and NO substitutions) - sometimes enzymes start being less effective BEFORE the exp. date so if you are close you might need to start a fresh batch.
Try these suggestions one at a time and see what helps. Enzymes are the key, but the other factors can play a role. My son was diagnosed at age 3 and it took almost a year to resolve (for the most part) these tummy issues. I know what a nightmare it can be. Don't give up. You will figure it out. You've come to the right place....
Best of luck,
Jena
6 yr old son with CF

 

[jena]

From our personal experience I will provide a few other suggestions:
We took our son in to see a pediatric GI specialist (in the end, it really didn't help our situation, but it certainly didn't hurt. And at least I have a patient history with this doctor in case problems such as this resurface).
Taking Culturelle regularly (over the counter probiotic).
Getting a Miralax prescription.
Taking an occasional dose of Dulcolax.
Adjusting enzyme dosage. This is key. It sounds like maybe your daughter is taking too many enzymes. But it is also possible she is not taking enough. She may need to take prevacid along with her enzymes. Check the expiration date on the enzymes (and make sure they are NOT generic brand - YOUR doctor must specify the name brand and NO substitutions) - sometimes enzymes start being less effective BEFORE the exp. date so if you are close you might need to start a fresh batch.
Try these suggestions one at a time and see what helps. Enzymes are the key, but the other factors can play a role. My son was diagnosed at age 3 and it took almost a year to resolve (for the most part) these tummy issues. I know what a nightmare it can be. Don't give up. You will figure it out. You've come to the right place....
Best of luck,
Jena
6 yr old son with CF