Problems with Enzymes

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bmurphy8655

New member
Hi, I am a new mom on twin boys. Both who have CF. We were not expecting this news at all, it was a totally shock when we found out during our pregnancy. One son Cayson has done awesome he takes his enzymes everyday every meal and is growing and gaining weight like a champ. Colton my other son is still in the hospital where he has been since he was born (over 2 months ago). My question is, when they were getting ready to send Colton home he started having some bloody stool. The doctors say it is from his enzyme so they stopped giving it to me. An the stools got better. Have any of you experienced this?
 
B

bmurphy8655

New member
Hi, I am a new mom on twin boys. Both who have CF. We were not expecting this news at all, it was a totally shock when we found out during our pregnancy. One son Cayson has done awesome he takes his enzymes everyday every meal and is growing and gaining weight like a champ. Colton my other son is still in the hospital where he has been since he was born (over 2 months ago). My question is, when they were getting ready to send Colton home he started having some bloody stool. The doctors say it is from his enzyme so they stopped giving it to me. An the stools got better. Have any of you experienced this?
 
B

bmurphy8655

New member
Hi, I am a new mom on twin boys. Both who have CF. We were not expecting this news at all, it was a totally shock when we found out during our pregnancy. One son Cayson has done awesome he takes his enzymes everyday every meal and is growing and gaining weight like a champ. Colton my other son is still in the hospital where he has been since he was born (over 2 months ago). My question is, when they were getting ready to send Colton home he started having some bloody stool. The doctors say it is from his enzyme so they stopped giving it to me. An the stools got better. Have any of you experienced this?
 
C

CJPsMom

New member
Congratulations on the twins and welcome to our world. I know what a shock it is as we found out last April that both my husband and I were carriers (during routine pregnancy screening). Our son was born 11/26/10 with CF. He too was in NICU, but only for a month.

I'd love to be able to offer advice/help, but that is one symptom we didn't experience...I think we got everything else!

And I love the names!!
 
C

CJPsMom

New member
Congratulations on the twins and welcome to our world. I know what a shock it is as we found out last April that both my husband and I were carriers (during routine pregnancy screening). Our son was born 11/26/10 with CF. He too was in NICU, but only for a month.

I'd love to be able to offer advice/help, but that is one symptom we didn't experience...I think we got everything else!

And I love the names!!
 
C

CJPsMom

New member
Congratulations on the twins and welcome to our world. I know what a shock it is as we found out last April that both my husband and I were carriers (during routine pregnancy screening). Our son was born 11/26/10 with CF. He too was in NICU, but only for a month.
<br />
<br />I'd love to be able to offer advice/help, but that is one symptom we didn't experience...I think we got everything else!
<br />
<br />And I love the names!!
 
B

bmurphy8655

New member
Thank you. We finally got the bloody stools to stop, however they stopped the enzymes. So it sucks both ways. Now they are saying Colton has lungs like a person with asthma. So he is doing like 6 breathing treatments a day, and is on steroids. What type of symptoms did you guys have to face?
 
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bmurphy8655

New member
Thank you. We finally got the bloody stools to stop, however they stopped the enzymes. So it sucks both ways. Now they are saying Colton has lungs like a person with asthma. So he is doing like 6 breathing treatments a day, and is on steroids. What type of symptoms did you guys have to face?
 
B

bmurphy8655

New member
Thank you. We finally got the bloody stools to stop, however they stopped the enzymes. So it sucks both ways. Now they are saying Colton has lungs like a person with asthma. So he is doing like 6 breathing treatments a day, and is on steroids. What type of symptoms did you guys have to face?
 
2

2girls

New member
My son spent a month in the NICU too so I understand it is not a fun place to be, especially with other kids at home. The first year for us was really hard with the enzymes - we started with pancrease then ultrase and now he is on Creon. I wish we would have started with Creon because the pills are so small and there is no choking like what we had with the other ones. My son is on antibiotics quite often, especially in the winter months. We didn't start any neb treatments until his first hospitalization when he was 7 months. He got a vest when he was 10 months old and life is good the majority of the time.

It all becomes routine after a while and even the hospitalizations aren't so scary anymore. It's always hard on the family, but we deal.

I hope your sweet boy gets to go home soon - they have the cutest names. Feel free to reach out to me anytime.
 
2

2girls

New member
My son spent a month in the NICU too so I understand it is not a fun place to be, especially with other kids at home. The first year for us was really hard with the enzymes - we started with pancrease then ultrase and now he is on Creon. I wish we would have started with Creon because the pills are so small and there is no choking like what we had with the other ones. My son is on antibiotics quite often, especially in the winter months. We didn't start any neb treatments until his first hospitalization when he was 7 months. He got a vest when he was 10 months old and life is good the majority of the time.

It all becomes routine after a while and even the hospitalizations aren't so scary anymore. It's always hard on the family, but we deal.

I hope your sweet boy gets to go home soon - they have the cutest names. Feel free to reach out to me anytime.
 
2

2girls

New member
My son spent a month in the NICU too so I understand it is not a fun place to be, especially with other kids at home. The first year for us was really hard with the enzymes - we started with pancrease then ultrase and now he is on Creon. I wish we would have started with Creon because the pills are so small and there is no choking like what we had with the other ones. My son is on antibiotics quite often, especially in the winter months. We didn't start any neb treatments until his first hospitalization when he was 7 months. He got a vest when he was 10 months old and life is good the majority of the time.
<br />
<br />It all becomes routine after a while and even the hospitalizations aren't so scary anymore. It's always hard on the family, but we deal.
<br />
<br />I hope your sweet boy gets to go home soon - they have the cutest names. Feel free to reach out to me anytime.
 
M

mariahsmommy

New member
Did your son have bowel surgery?

My daughter had meconium ileus when she was born so she had immediate bowel surgery with a placement of an ileostomy bag. She was able to get rid of it after about a monoth. But she did have some blood in her stool after surgery and for a couple weeks, but never from enzymes that we know of.
I pray that he can start taking enzymes again, start gaining weight, and get to come home with all of you. It is so hard with a child in the NICU, but there is light at the end of the tunnel.
 
M

mariahsmommy

New member
Did your son have bowel surgery?

My daughter had meconium ileus when she was born so she had immediate bowel surgery with a placement of an ileostomy bag. She was able to get rid of it after about a monoth. But she did have some blood in her stool after surgery and for a couple weeks, but never from enzymes that we know of.
I pray that he can start taking enzymes again, start gaining weight, and get to come home with all of you. It is so hard with a child in the NICU, but there is light at the end of the tunnel.
 
M

mariahsmommy

New member
Did your son have bowel surgery?
<br />
<br />My daughter had meconium ileus when she was born so she had immediate bowel surgery with a placement of an ileostomy bag. She was able to get rid of it after about a monoth. But she did have some blood in her stool after surgery and for a couple weeks, but never from enzymes that we know of.
<br />I pray that he can start taking enzymes again, start gaining weight, and get to come home with all of you. It is so hard with a child in the NICU, but there is light at the end of the tunnel.
 
T

threebabies

Member
Hi welcome... I truly feel your pain. I too have twin boys with cf. They are 21 months. I also have a 3 and half old daughter with cf. My boys at two months old were both hospitalized for facial palsy due to cf. Gavin suffered from bilateral facial paralysis while Peter suffered from unilateral facial paralysis. This happened because they were extremely vitamin deficient. The lack of vitamin A caused the paralysis. Their faces have improved but the still have residuals. There was a studied written and published recently you can google it. Health wise we are maintaining. The boys are extremely active in fact they act like two completely normal curious toddlers. They drive me crazy...lol. You can PM me whenever you need to talk. This is a difficult time. I am still learning so much. It is a long road ahead.

Gina
Mom to Sophia 3 w/cf, Peter and Gavin 21 months w/cf df508&py849x
 
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threebabies

Member
Hi welcome... I truly feel your pain. I too have twin boys with cf. They are 21 months. I also have a 3 and half old daughter with cf. My boys at two months old were both hospitalized for facial palsy due to cf. Gavin suffered from bilateral facial paralysis while Peter suffered from unilateral facial paralysis. This happened because they were extremely vitamin deficient. The lack of vitamin A caused the paralysis. Their faces have improved but the still have residuals. There was a studied written and published recently you can google it. Health wise we are maintaining. The boys are extremely active in fact they act like two completely normal curious toddlers. They drive me crazy...lol. You can PM me whenever you need to talk. This is a difficult time. I am still learning so much. It is a long road ahead.

Gina
Mom to Sophia 3 w/cf, Peter and Gavin 21 months w/cf df508&py849x
 
T

threebabies

Member
Hi welcome... I truly feel your pain. I too have twin boys with cf. They are 21 months. I also have a 3 and half old daughter with cf. My boys at two months old were both hospitalized for facial palsy due to cf. Gavin suffered from bilateral facial paralysis while Peter suffered from unilateral facial paralysis. This happened because they were extremely vitamin deficient. The lack of vitamin A caused the paralysis. Their faces have improved but the still have residuals. There was a studied written and published recently you can google it. Health wise we are maintaining. The boys are extremely active in fact they act like two completely normal curious toddlers. They drive me crazy...lol. You can PM me whenever you need to talk. This is a difficult time. I am still learning so much. It is a long road ahead.
<br />
<br />Gina
<br />Mom to Sophia 3 w/cf, Peter and Gavin 21 months w/cf df508&py849x
<br />
<br />
 
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