My newborn son was diagnosed with cf last week. (He's 17 days old today.) We're still completely in shock, but we're doing our best to get his treatments started and under control before I have to go back to work in a few weeks.<div><br></div><div>At the hospital, they gave us enzymes to mix with applesauce to give him before each feeding, which I've been doing. We're definitely changing fewer dirty diapers (before it was around 10 a day), but he seems to be very uncomfortable/in a lot of pain. The doctor had us reduce the enzyme to a half capsule, but he still seems uncomfortable. Can anyone tell me if this is normal? Will he get used to the enzyme or does this sound like an abnormal reaction?<div><br></div><div>Thank you.</div><div><br></div><div>ES</div></div>
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Trouble with enzymes?
- Thread starter briarrose
- Start date
My newborn son was diagnosed with cf last week. (He's 17 days old today.) We're still completely in shock, but we're doing our best to get his treatments started and under control before I have to go back to work in a few weeks.<br>At the hospital, they gave us enzymes to mix with applesauce to give him before each feeding, which I've been doing. We're definitely changing fewer dirty diapers (before it was around 10 a day), but he seems to be very uncomfortable/in a lot of pain. The doctor had us reduce the enzyme to a half capsule, but he still seems uncomfortable. Can anyone tell me if this is normal? Will he get used to the enzyme or does this sound like an abnormal reaction?<br>Thank you.<br>ES
My newborn son was diagnosed with cf last week. (He's 17 days old today.) We're still completely in shock, but we're doing our best to get his treatments started and under control before I have to go back to work in a few weeks.<br>At the hospital, they gave us enzymes to mix with applesauce to give him before each feeding, which I've been doing. We're definitely changing fewer dirty diapers (before it was around 10 a day), but he seems to be very uncomfortable/in a lot of pain. The doctor had us reduce the enzyme to a half capsule, but he still seems uncomfortable. Can anyone tell me if this is normal? Will he get used to the enzyme or does this sound like an abnormal reaction?<br>Thank you.<br>ES
<P>Well, first, WELCOME! It's always hard to have to welcome a new member to this club nobody asked to join, BUT, you've found a great place to come for support and information!</P>
<P>There will be some trial and error with enzymes at first. It takes a while for the body to adjust, and to find the correct dose. My guess is that the docs will have you increase the enzyme amount slowly to see what happens. You may even need to try a different brand. We had to do both of these things early on. Be in close contact with your CF team. Call when ever you have questions or concerns and don't worry that you are calling too much or for "no good reason." The CF docs will become your best friends, but YOU will have to keep them informed of what's going on with your little guy.</P>
<P> </P>
<P>You'll see that with CF there is a ton of variation between patients. No two CF'ers have exactly the same experiences, but we can all learn from each other. </P>
<P> </P>
<P>I so remember that overwhelmed feeling. It will get better, but not for a while. You're already reaching out and looking for support like this forum, so, you are well on your way to tackleing this disease head on. We're all here to help.</P>
<P> </P>
<P>Enjoy your new family member, and DON"T HESITATE to ask questions! We're glad you're here!</P>
<P>There will be some trial and error with enzymes at first. It takes a while for the body to adjust, and to find the correct dose. My guess is that the docs will have you increase the enzyme amount slowly to see what happens. You may even need to try a different brand. We had to do both of these things early on. Be in close contact with your CF team. Call when ever you have questions or concerns and don't worry that you are calling too much or for "no good reason." The CF docs will become your best friends, but YOU will have to keep them informed of what's going on with your little guy.</P>
<P> </P>
<P>You'll see that with CF there is a ton of variation between patients. No two CF'ers have exactly the same experiences, but we can all learn from each other. </P>
<P> </P>
<P>I so remember that overwhelmed feeling. It will get better, but not for a while. You're already reaching out and looking for support like this forum, so, you are well on your way to tackleing this disease head on. We're all here to help.</P>
<P> </P>
<P>Enjoy your new family member, and DON"T HESITATE to ask questions! We're glad you're here!</P>
<P>Well, first, WELCOME! It's always hard to have to welcome a new member to this club nobody asked to join, BUT, you've found a great place to come for support and information!</P>
<P>There will be some trial and error with enzymes at first. It takes a while for the body to adjust, and to find the correct dose. My guess is that the docs will have you increase the enzyme amount slowly to see what happens. You may even need to try a different brand. We had to do both of these things early on. Be in close contact with your CF team. Call when ever you have questions or concerns and don't worry that you are calling too much or for "no good reason." The CF docs will become your best friends, but YOU will have to keep them informed of what's going on with your little guy.</P>
<P></P>
<P>You'll see that with CF there is a ton of variation between patients. No two CF'ers have exactly the same experiences, but we can all learn from each other. </P>
<P></P>
<P>I so remember that overwhelmed feeling. It will get better, but not for a while. You're already reaching out and looking for support like this forum, so, you are well on your way to tackleing this disease head on. We're all here to help.</P>
<P></P>
<P>Enjoy your new family member, and DON"T HESITATE to ask questions! We're glad you're here!</P>
<P>There will be some trial and error with enzymes at first. It takes a while for the body to adjust, and to find the correct dose. My guess is that the docs will have you increase the enzyme amount slowly to see what happens. You may even need to try a different brand. We had to do both of these things early on. Be in close contact with your CF team. Call when ever you have questions or concerns and don't worry that you are calling too much or for "no good reason." The CF docs will become your best friends, but YOU will have to keep them informed of what's going on with your little guy.</P>
<P></P>
<P>You'll see that with CF there is a ton of variation between patients. No two CF'ers have exactly the same experiences, but we can all learn from each other. </P>
<P></P>
<P>I so remember that overwhelmed feeling. It will get better, but not for a while. You're already reaching out and looking for support like this forum, so, you are well on your way to tackleing this disease head on. We're all here to help.</P>
<P></P>
<P>Enjoy your new family member, and DON"T HESITATE to ask questions! We're glad you're here!</P>
<P><BR>Well, first, WELCOME! It's always hard to have to welcome a new member to this club nobody asked to join, BUT, you've found a great place to come for support and information!</P>
<P>There will be some trial and error with enzymes at first. It takes a while for the body to adjust, and to find the correct dose. My guess is that the docs will have you increase the enzyme amount slowly to see what happens. You may even need to try a different brand. We had to do both of these things early on. Be in close contact with your CF team. Call when ever you have questions or concerns and don't worry that you are calling too much or for "no good reason." The CF docs will become your best friends, but YOU will have to keep them informed of what's going on with your little guy.</P>
<P></P>
<P>You'll see that with CF there is a ton of variation between patients. No two CF'ers have exactly the same experiences, but we can all learn from each other. </P>
<P></P>
<P>I so remember that overwhelmed feeling. It will get better, but not for a while. You're already reaching out and looking for support like this forum, so, you are well on your way to tackleing this disease head on. We're all here to help.</P>
<P></P>
<P>Enjoy your new family member, and DON"T HESITATE to ask questions! We're glad you're here!</P>
<P>There will be some trial and error with enzymes at first. It takes a while for the body to adjust, and to find the correct dose. My guess is that the docs will have you increase the enzyme amount slowly to see what happens. You may even need to try a different brand. We had to do both of these things early on. Be in close contact with your CF team. Call when ever you have questions or concerns and don't worry that you are calling too much or for "no good reason." The CF docs will become your best friends, but YOU will have to keep them informed of what's going on with your little guy.</P>
<P></P>
<P>You'll see that with CF there is a ton of variation between patients. No two CF'ers have exactly the same experiences, but we can all learn from each other. </P>
<P></P>
<P>I so remember that overwhelmed feeling. It will get better, but not for a while. You're already reaching out and looking for support like this forum, so, you are well on your way to tackleing this disease head on. We're all here to help.</P>
<P></P>
<P>Enjoy your new family member, and DON"T HESITATE to ask questions! We're glad you're here!</P>
Hi there - Congrats on the birth of your son! As Tami said, no two CFers are alike! Crazy disease.
<br>
<br>Which enzymes is he taking? My daughter wasn't a particularly fussy baby while taking Pancrease - but her weight gain was very poor so we tried Creon. She BMed at least 6x daily while taking Creon but only 1-2x with Pancrease. Creon is generally well-tolerated by many CF patients - my daughter was not one of them. As she got older and was able to communicate more efficiently, she often complained about her tummy hurting. Zenpep came out around that time so we switched again. Her weight has improved significantly and no more tummy aches. Enzymes really are made up of trial and error. Zenpep has been great for us.
<br>
<br>Which enzymes is he taking? My daughter wasn't a particularly fussy baby while taking Pancrease - but her weight gain was very poor so we tried Creon. She BMed at least 6x daily while taking Creon but only 1-2x with Pancrease. Creon is generally well-tolerated by many CF patients - my daughter was not one of them. As she got older and was able to communicate more efficiently, she often complained about her tummy hurting. Zenpep came out around that time so we switched again. Her weight has improved significantly and no more tummy aches. Enzymes really are made up of trial and error. Zenpep has been great for us.
Hi there - Congrats on the birth of your son! As Tami said, no two CFers are alike! Crazy disease.
<br>
<br>Which enzymes is he taking? My daughter wasn't a particularly fussy baby while taking Pancrease - but her weight gain was very poor so we tried Creon. She BMed at least 6x daily while taking Creon but only 1-2x with Pancrease. Creon is generally well-tolerated by many CF patients - my daughter was not one of them. As she got older and was able to communicate more efficiently, she often complained about her tummy hurting. Zenpep came out around that time so we switched again. Her weight has improved significantly and no more tummy aches. Enzymes really are made up of trial and error. Zenpep has been great for us.
<br>
<br>Which enzymes is he taking? My daughter wasn't a particularly fussy baby while taking Pancrease - but her weight gain was very poor so we tried Creon. She BMed at least 6x daily while taking Creon but only 1-2x with Pancrease. Creon is generally well-tolerated by many CF patients - my daughter was not one of them. As she got older and was able to communicate more efficiently, she often complained about her tummy hurting. Zenpep came out around that time so we switched again. Her weight has improved significantly and no more tummy aches. Enzymes really are made up of trial and error. Zenpep has been great for us.
Hi there - Congrats on the birth of your son! As Tami said, no two CFers are alike! Crazy disease.
<br>
<br>Which enzymes is he taking? My daughter wasn't a particularly fussy baby while taking Pancrease - but her weight gain was very poor so we tried Creon. She BMed at least 6x daily while taking Creon but only 1-2x with Pancrease. Creon is generally well-tolerated by many CF patients - my daughter was not one of them. As she got older and was able to communicate more efficiently, she often complained about her tummy hurting. Zenpep came out around that time so we switched again. Her weight has improved significantly and no more tummy aches. Enzymes really are made up of trial and error. Zenpep has been great for us.
<br>
<br>Which enzymes is he taking? My daughter wasn't a particularly fussy baby while taking Pancrease - but her weight gain was very poor so we tried Creon. She BMed at least 6x daily while taking Creon but only 1-2x with Pancrease. Creon is generally well-tolerated by many CF patients - my daughter was not one of them. As she got older and was able to communicate more efficiently, she often complained about her tummy hurting. Zenpep came out around that time so we switched again. Her weight has improved significantly and no more tummy aches. Enzymes really are made up of trial and error. Zenpep has been great for us.
Thank you for the warm welcome. This is definitely still overwhelming, but we're starting to get a hang of it. (Just in time for Tuesday's appt. where we add more medicine to the schedule.)
The baby's on Creon, and we just bumped it back up to 1 full capsule with each feeding. (We had knocked it down to half of one, and that seemed to helo a little bit. He's definitely having BM about 6 times a day, but that's 50% less than he was before the enzymes, and it's a smaller amount than before. And, he's only 3 weeks old, so I think that's still in the normal range.
We actually started him on Zantec yesterday, and he seems to be far less fussy so far and is doing better with not losing it during his feedings.
I just want to keep this baby as comfortable as possible, especially since he can't tell us how he's feeling and I'm having to guess while still getting to know his personality.
Thanks again.
Erin
The baby's on Creon, and we just bumped it back up to 1 full capsule with each feeding. (We had knocked it down to half of one, and that seemed to helo a little bit. He's definitely having BM about 6 times a day, but that's 50% less than he was before the enzymes, and it's a smaller amount than before. And, he's only 3 weeks old, so I think that's still in the normal range.
We actually started him on Zantec yesterday, and he seems to be far less fussy so far and is doing better with not losing it during his feedings.
I just want to keep this baby as comfortable as possible, especially since he can't tell us how he's feeling and I'm having to guess while still getting to know his personality.
Thanks again.
Erin
Thank you for the warm welcome. This is definitely still overwhelming, but we're starting to get a hang of it. (Just in time for Tuesday's appt. where we add more medicine to the schedule.)
The baby's on Creon, and we just bumped it back up to 1 full capsule with each feeding. (We had knocked it down to half of one, and that seemed to helo a little bit. He's definitely having BM about 6 times a day, but that's 50% less than he was before the enzymes, and it's a smaller amount than before. And, he's only 3 weeks old, so I think that's still in the normal range.
We actually started him on Zantec yesterday, and he seems to be far less fussy so far and is doing better with not losing it during his feedings.
I just want to keep this baby as comfortable as possible, especially since he can't tell us how he's feeling and I'm having to guess while still getting to know his personality.
Thanks again.
Erin
The baby's on Creon, and we just bumped it back up to 1 full capsule with each feeding. (We had knocked it down to half of one, and that seemed to helo a little bit. He's definitely having BM about 6 times a day, but that's 50% less than he was before the enzymes, and it's a smaller amount than before. And, he's only 3 weeks old, so I think that's still in the normal range.
We actually started him on Zantec yesterday, and he seems to be far less fussy so far and is doing better with not losing it during his feedings.
I just want to keep this baby as comfortable as possible, especially since he can't tell us how he's feeling and I'm having to guess while still getting to know his personality.
Thanks again.
Erin
Thank you for the warm welcome. This is definitely still overwhelming, but we're starting to get a hang of it. (Just in time for Tuesday's appt. where we add more medicine to the schedule.)
<br />
<br />The baby's on Creon, and we just bumped it back up to 1 full capsule with each feeding. (We had knocked it down to half of one, and that seemed to helo a little bit. He's definitely having BM about 6 times a day, but that's 50% less than he was before the enzymes, and it's a smaller amount than before. And, he's only 3 weeks old, so I think that's still in the normal range.
<br />
<br />We actually started him on Zantec yesterday, and he seems to be far less fussy so far and is doing better with not losing it during his feedings.
<br />
<br />I just want to keep this baby as comfortable as possible, especially since he can't tell us how he's feeling and I'm having to guess while still getting to know his personality.
<br />
<br />Thanks again.
<br />
<br />Erin
<br />
<br />The baby's on Creon, and we just bumped it back up to 1 full capsule with each feeding. (We had knocked it down to half of one, and that seemed to helo a little bit. He's definitely having BM about 6 times a day, but that's 50% less than he was before the enzymes, and it's a smaller amount than before. And, he's only 3 weeks old, so I think that's still in the normal range.
<br />
<br />We actually started him on Zantec yesterday, and he seems to be far less fussy so far and is doing better with not losing it during his feedings.
<br />
<br />I just want to keep this baby as comfortable as possible, especially since he can't tell us how he's feeling and I'm having to guess while still getting to know his personality.
<br />
<br />Thanks again.
<br />
<br />Erin
<P>DS had similar issues -- he was a horrible feeder and the best times to feed him would be at night when he was sleepy/sleeping. Part of the issue was that they started him on pregistimil in the NICU and he hated it. They tried to tell us he didn't know any better, but when that bottle came at him, he'd scream and try to escape. So we had him switched to a regular formula. </P>
<P> He was on zantac, which also helps the enzymes to work better. It seemed as if we'd adjust the enzymes one way or the other it'd be constipation or too many diapers. He was on pancrease at the time and the beads were small enough to count out half a capsule and adjust his dosage accordingly. Still drove me nuts, but eventually we got him figured out.</P>
<P> He was on zantac, which also helps the enzymes to work better. It seemed as if we'd adjust the enzymes one way or the other it'd be constipation or too many diapers. He was on pancrease at the time and the beads were small enough to count out half a capsule and adjust his dosage accordingly. Still drove me nuts, but eventually we got him figured out.</P>
<P>DS had similar issues -- he was a horrible feeder and the best times to feed him would be at night when he was sleepy/sleeping. Part of the issue was that they started him on pregistimil in the NICU and he hated it. They tried to tell us he didn't know any better, but when that bottle came at him, he'd scream and try to escape. So we had him switched to a regular formula. </P>
<P>He was on zantac, which also helps the enzymes to work better. It seemed as if we'd adjust the enzymes one way or the other it'd be constipation or too many diapers. He was on pancrease at the time and the beads were small enough to count out half a capsule and adjust his dosage accordingly. Still drove me nuts, but eventually we got him figured out.</P>
<P>He was on zantac, which also helps the enzymes to work better. It seemed as if we'd adjust the enzymes one way or the other it'd be constipation or too many diapers. He was on pancrease at the time and the beads were small enough to count out half a capsule and adjust his dosage accordingly. Still drove me nuts, but eventually we got him figured out.</P>
<P>DS had similar issues -- he was a horrible feeder and the best times to feed him would be at night when he was sleepy/sleeping. Part of the issue was that they started him on pregistimil in the NICU and he hated it. They tried to tell us he didn't know any better, but when that bottle came at him, he'd scream and try to escape. So we had him switched to a regular formula. </P>
<P>He was on zantac, which also helps the enzymes to work better. It seemed as if we'd adjust the enzymes one way or the other it'd be constipation or too many diapers. He was on pancrease at the time and the beads were small enough to count out half a capsule and adjust his dosage accordingly. Still drove me nuts, but eventually we got him figured out.</P>
<P>He was on zantac, which also helps the enzymes to work better. It seemed as if we'd adjust the enzymes one way or the other it'd be constipation or too many diapers. He was on pancrease at the time and the beads were small enough to count out half a capsule and adjust his dosage accordingly. Still drove me nuts, but eventually we got him figured out.</P>