Stomach Issues

Andrea · May 16, 2008

First I want to say Hi to all of you and also thank you. In the past three weeks I have been reading this sight collecting information. Now I think I can type without breaking down into tears. My son Benjamin was diagnosed 3 weeks ago with cystic fibrosis. He is now six weeks old. I have a couple of questions I thought some of you may be able to answer. First, he has severe abdominal issues I have talked to the CF center several times in regards to them but I want to make sure there is nothing I am missing. He has been on enzymes for three weeks now (Creon 5) and he just switched formula to pregestimal. He is very fussy and will arch himself throughout the day and not bend while he is screaming and turning red. He does not rest often and it is a miracle if he sleeps longer then 2 hours in a row without waking up screaming in what seems like pain. He constantly is gagging and now has started to projectile vomit. He also still acts like he is starving and we go through obscene amounts of formula. His stool is irriatating his skin and making him break out into a bloody rash. ( Even though he is changed probably every hour and a half) He has an antibiotic cream for this. (bactroban) He also is on bactrim for a bacteria they found at 3 weeks. Has anyone else gone through something similar to this? Is there something else I should be doing to help him ease the pain? This is long so I am not going to ask my other questions until later. Thank you again to all of you for sharing your stories and providing people like me with hope and support!

Andrea · May 16, 2008

First I want to say Hi to all of you and also thank you. In the past three weeks I have been reading this sight collecting information. Now I think I can type without breaking down into tears. My son Benjamin was diagnosed 3 weeks ago with cystic fibrosis. He is now six weeks old. I have a couple of questions I thought some of you may be able to answer. First, he has severe abdominal issues I have talked to the CF center several times in regards to them but I want to make sure there is nothing I am missing. He has been on enzymes for three weeks now (Creon 5) and he just switched formula to pregestimal. He is very fussy and will arch himself throughout the day and not bend while he is screaming and turning red. He does not rest often and it is a miracle if he sleeps longer then 2 hours in a row without waking up screaming in what seems like pain. He constantly is gagging and now has started to projectile vomit. He also still acts like he is starving and we go through obscene amounts of formula. His stool is irriatating his skin and making him break out into a bloody rash. ( Even though he is changed probably every hour and a half) He has an antibiotic cream for this. (bactroban) He also is on bactrim for a bacteria they found at 3 weeks. Has anyone else gone through something similar to this? Is there something else I should be doing to help him ease the pain? This is long so I am not going to ask my other questions until later. Thank you again to all of you for sharing your stories and providing people like me with hope and support!

Andrea · May 16, 2008

First I want to say Hi to all of you and also thank you. In the past three weeks I have been reading this sight collecting information. Now I think I can type without breaking down into tears. My son Benjamin was diagnosed 3 weeks ago with cystic fibrosis. He is now six weeks old. I have a couple of questions I thought some of you may be able to answer. First, he has severe abdominal issues I have talked to the CF center several times in regards to them but I want to make sure there is nothing I am missing. He has been on enzymes for three weeks now (Creon 5) and he just switched formula to pregestimal. He is very fussy and will arch himself throughout the day and not bend while he is screaming and turning red. He does not rest often and it is a miracle if he sleeps longer then 2 hours in a row without waking up screaming in what seems like pain. He constantly is gagging and now has started to projectile vomit. He also still acts like he is starving and we go through obscene amounts of formula. His stool is irriatating his skin and making him break out into a bloody rash. ( Even though he is changed probably every hour and a half) He has an antibiotic cream for this. (bactroban) He also is on bactrim for a bacteria they found at 3 weeks. Has anyone else gone through something similar to this? Is there something else I should be doing to help him ease the pain? This is long so I am not going to ask my other questions until later. Thank you again to all of you for sharing your stories and providing people like me with hope and support!

Andrea · May 16, 2008

First I want to say Hi to all of you and also thank you. In the past three weeks I have been reading this sight collecting information. Now I think I can type without breaking down into tears. My son Benjamin was diagnosed 3 weeks ago with cystic fibrosis. He is now six weeks old. I have a couple of questions I thought some of you may be able to answer. First, he has severe abdominal issues I have talked to the CF center several times in regards to them but I want to make sure there is nothing I am missing. He has been on enzymes for three weeks now (Creon 5) and he just switched formula to pregestimal. He is very fussy and will arch himself throughout the day and not bend while he is screaming and turning red. He does not rest often and it is a miracle if he sleeps longer then 2 hours in a row without waking up screaming in what seems like pain. He constantly is gagging and now has started to projectile vomit. He also still acts like he is starving and we go through obscene amounts of formula. His stool is irriatating his skin and making him break out into a bloody rash. ( Even though he is changed probably every hour and a half) He has an antibiotic cream for this. (bactroban) He also is on bactrim for a bacteria they found at 3 weeks. Has anyone else gone through something similar to this? Is there something else I should be doing to help him ease the pain? This is long so I am not going to ask my other questions until later. Thank you again to all of you for sharing your stories and providing people like me with hope and support!

Andrea · May 16, 2008

First I want to say Hi to all of you and also thank you. In the past three weeks I have been reading this sight collecting information. Now I think I can type without breaking down into tears. My son Benjamin was diagnosed 3 weeks ago with cystic fibrosis. He is now six weeks old. I have a couple of questions I thought some of you may be able to answer. First, he has severe abdominal issues I have talked to the CF center several times in regards to them but I want to make sure there is nothing I am missing. He has been on enzymes for three weeks now (Creon 5) and he just switched formula to pregestimal. He is very fussy and will arch himself throughout the day and not bend while he is screaming and turning red. He does not rest often and it is a miracle if he sleeps longer then 2 hours in a row without waking up screaming in what seems like pain. He constantly is gagging and now has started to projectile vomit. He also still acts like he is starving and we go through obscene amounts of formula. His stool is irriatating his skin and making him break out into a bloody rash. ( Even though he is changed probably every hour and a half) He has an antibiotic cream for this. (bactroban) He also is on bactrim for a bacteria they found at 3 weeks. Has anyone else gone through something similar to this? Is there something else I should be doing to help him ease the pain? This is long so I am not going to ask my other questions until later. Thank you again to all of you for sharing your stories and providing people like me with hope and support!

Ratatosk · May 16, 2008

Are his stools loose or are they solid and green like grass? Could be an enzyme adjustment. If loose, not enough, hard, maybe too many -- we never had an issue with him having too many enzymes, we usually had frequent loose stools and bright red monkey but.

Could he have reflux? DS used to arch and spit up and was put on zantac. I know of someone whose non-cf child had reflux and would eat a LOT of formula -- apparently it helped calm his tummy.

Also, DS HATED pregistimil. He'd scream and try to escape from the bottle...

Ratatosk · May 16, 2008

Are his stools loose or are they solid and green like grass? Could be an enzyme adjustment. If loose, not enough, hard, maybe too many -- we never had an issue with him having too many enzymes, we usually had frequent loose stools and bright red monkey but.

Could he have reflux? DS used to arch and spit up and was put on zantac. I know of someone whose non-cf child had reflux and would eat a LOT of formula -- apparently it helped calm his tummy.

Also, DS HATED pregistimil. He'd scream and try to escape from the bottle...

Ratatosk · May 16, 2008

Are his stools loose or are they solid and green like grass? Could be an enzyme adjustment. If loose, not enough, hard, maybe too many -- we never had an issue with him having too many enzymes, we usually had frequent loose stools and bright red monkey but.

Could he have reflux? DS used to arch and spit up and was put on zantac. I know of someone whose non-cf child had reflux and would eat a LOT of formula -- apparently it helped calm his tummy.

Also, DS HATED pregistimil. He'd scream and try to escape from the bottle...

Ratatosk · May 16, 2008

Are his stools loose or are they solid and green like grass? Could be an enzyme adjustment. If loose, not enough, hard, maybe too many -- we never had an issue with him having too many enzymes, we usually had frequent loose stools and bright red monkey but.

Could he have reflux? DS used to arch and spit up and was put on zantac. I know of someone whose non-cf child had reflux and would eat a LOT of formula -- apparently it helped calm his tummy.

Also, DS HATED pregistimil. He'd scream and try to escape from the bottle...

Ratatosk · May 16, 2008

Are his stools loose or are they solid and green like grass? Could be an enzyme adjustment. If loose, not enough, hard, maybe too many -- we never had an issue with him having too many enzymes, we usually had frequent loose stools and bright red monkey but.
 
 Could he have reflux? DS used to arch and spit up and was put on zantac. I know of someone whose non-cf child had reflux and would eat a LOT of formula -- apparently it helped calm his tummy.
 
 Also, DS HATED pregistimil. He'd scream and try to escape from the bottle...

AnD · May 17, 2008

All I can offer is that my mom said that when I was a baby, they put me on too many enzymes to start out, and, in her words "they ate (my) butt up" and they had to lower them before it would clear up. My daughter (no cf) also had to have zantac (or something similar- I'm blanking at the name right now) due to tummy issues and urping. I hope they get him sorted out quickly!

Oh, I forgot, since he is on an antibiotic, have they checked to see if the rash is a yeast rash? Those are awful, but there is prescription cream for them (Nystatin I think).

AnD · May 17, 2008

All I can offer is that my mom said that when I was a baby, they put me on too many enzymes to start out, and, in her words "they ate (my) butt up" and they had to lower them before it would clear up. My daughter (no cf) also had to have zantac (or something similar- I'm blanking at the name right now) due to tummy issues and urping. I hope they get him sorted out quickly!

Oh, I forgot, since he is on an antibiotic, have they checked to see if the rash is a yeast rash? Those are awful, but there is prescription cream for them (Nystatin I think).

AnD · May 17, 2008

All I can offer is that my mom said that when I was a baby, they put me on too many enzymes to start out, and, in her words "they ate (my) butt up" and they had to lower them before it would clear up. My daughter (no cf) also had to have zantac (or something similar- I'm blanking at the name right now) due to tummy issues and urping. I hope they get him sorted out quickly!

Oh, I forgot, since he is on an antibiotic, have they checked to see if the rash is a yeast rash? Those are awful, but there is prescription cream for them (Nystatin I think).

AnD · May 17, 2008

All I can offer is that my mom said that when I was a baby, they put me on too many enzymes to start out, and, in her words "they ate (my) butt up" and they had to lower them before it would clear up. My daughter (no cf) also had to have zantac (or something similar- I'm blanking at the name right now) due to tummy issues and urping. I hope they get him sorted out quickly!

Oh, I forgot, since he is on an antibiotic, have they checked to see if the rash is a yeast rash? Those are awful, but there is prescription cream for them (Nystatin I think).

AnD · May 17, 2008

All I can offer is that my mom said that when I was a baby, they put me on too many enzymes to start out, and, in her words "they ate (my) butt up" and they had to lower them before it would clear up. My daughter (no cf) also had to have zantac (or something similar- I'm blanking at the name right now) due to tummy issues and urping. I hope they get him sorted out quickly!
 
 Oh, I forgot, since he is on an antibiotic, have they checked to see if the rash is a yeast rash? Those are awful, but there is prescription cream for them (Nystatin I think).

BabyBeauty · May 17, 2008

Andrea,

We have gone through similar issues with our little one. She is now 3 1/2 months old. She was eating every two hours, eating double what a normal infant her age, had triple the amount of normal stools, had a bloody diaper burn, was projectile vomiting everywhere...we call it her poltergeist phase.....not fun!

After several disappointing weight gains and many changes to her diet (we are on pregestimil as well) we had her get an upper GI done. They diagnosed her with severe reflux or GERD. As soon as they got her meds right we have a normal baby.

As far as the projectile vomit...she has been put on Simply Thick Nectar packets, Regalin (sp?). The Simply Thick will thicken the formula to help it stay down. The Regalin she takes to move the food through faster.

She was originally on Zantac and then changed her to Prevacid. They think her stomach was too acidic and was not digesting her enzymes at the right time in her body. The Prevacid has done wonders.

So the rash...Avery had a very similar rash. When you would wipe it became bloody. It almost looked like a burn. We used gobbbbs of desitin with Aquaphor over it. We pretty much always use Aquaphor to protect her skin.

After the changes to her diet she has jumped several percentiles in weight. I would look into changing up some meds to help out.

BabyBeauty · May 17, 2008

Andrea,

We have gone through similar issues with our little one. She is now 3 1/2 months old. She was eating every two hours, eating double what a normal infant her age, had triple the amount of normal stools, had a bloody diaper burn, was projectile vomiting everywhere...we call it her poltergeist phase.....not fun!

After several disappointing weight gains and many changes to her diet (we are on pregestimil as well) we had her get an upper GI done. They diagnosed her with severe reflux or GERD. As soon as they got her meds right we have a normal baby.

As far as the projectile vomit...she has been put on Simply Thick Nectar packets, Regalin (sp?). The Simply Thick will thicken the formula to help it stay down. The Regalin she takes to move the food through faster.

She was originally on Zantac and then changed her to Prevacid. They think her stomach was too acidic and was not digesting her enzymes at the right time in her body. The Prevacid has done wonders.

So the rash...Avery had a very similar rash. When you would wipe it became bloody. It almost looked like a burn. We used gobbbbs of desitin with Aquaphor over it. We pretty much always use Aquaphor to protect her skin.

After the changes to her diet she has jumped several percentiles in weight. I would look into changing up some meds to help out.

BabyBeauty · May 17, 2008

Andrea,

We have gone through similar issues with our little one. She is now 3 1/2 months old. She was eating every two hours, eating double what a normal infant her age, had triple the amount of normal stools, had a bloody diaper burn, was projectile vomiting everywhere...we call it her poltergeist phase.....not fun!

After several disappointing weight gains and many changes to her diet (we are on pregestimil as well) we had her get an upper GI done. They diagnosed her with severe reflux or GERD. As soon as they got her meds right we have a normal baby.

As far as the projectile vomit...she has been put on Simply Thick Nectar packets, Regalin (sp?). The Simply Thick will thicken the formula to help it stay down. The Regalin she takes to move the food through faster.

She was originally on Zantac and then changed her to Prevacid. They think her stomach was too acidic and was not digesting her enzymes at the right time in her body. The Prevacid has done wonders.

So the rash...Avery had a very similar rash. When you would wipe it became bloody. It almost looked like a burn. We used gobbbbs of desitin with Aquaphor over it. We pretty much always use Aquaphor to protect her skin.

After the changes to her diet she has jumped several percentiles in weight. I would look into changing up some meds to help out.

BabyBeauty · May 17, 2008

Andrea,

We have gone through similar issues with our little one. She is now 3 1/2 months old. She was eating every two hours, eating double what a normal infant her age, had triple the amount of normal stools, had a bloody diaper burn, was projectile vomiting everywhere...we call it her poltergeist phase.....not fun!

After several disappointing weight gains and many changes to her diet (we are on pregestimil as well) we had her get an upper GI done. They diagnosed her with severe reflux or GERD. As soon as they got her meds right we have a normal baby.

As far as the projectile vomit...she has been put on Simply Thick Nectar packets, Regalin (sp?). The Simply Thick will thicken the formula to help it stay down. The Regalin she takes to move the food through faster.

She was originally on Zantac and then changed her to Prevacid. They think her stomach was too acidic and was not digesting her enzymes at the right time in her body. The Prevacid has done wonders.

So the rash...Avery had a very similar rash. When you would wipe it became bloody. It almost looked like a burn. We used gobbbbs of desitin with Aquaphor over it. We pretty much always use Aquaphor to protect her skin.

After the changes to her diet she has jumped several percentiles in weight. I would look into changing up some meds to help out.

BabyBeauty · May 17, 2008

Andrea,
 
 We have gone through similar issues with our little one. She is now 3 1/2 months old. She was eating every two hours, eating double what a normal infant her age, had triple the amount of normal stools, had a bloody diaper burn, was projectile vomiting everywhere...we call it her poltergeist phase.....not fun!
 
 After several disappointing weight gains and many changes to her diet (we are on pregestimil as well) we had her get an upper GI done. They diagnosed her with severe reflux or GERD. As soon as they got her meds right we have a normal baby.
 
 As far as the projectile vomit...she has been put on Simply Thick Nectar packets, Regalin (sp?). The Simply Thick will thicken the formula to help it stay down. The Regalin she takes to move the food through faster.
 
 She was originally on Zantac and then changed her to Prevacid. They think her stomach was too acidic and was not digesting her enzymes at the right time in her body. The Prevacid has done wonders.
 
 So the rash...Avery had a very similar rash. When you would wipe it became bloody. It almost looked like a burn. We used gobbbbs of desitin with Aquaphor over it. We pretty much always use Aquaphor to protect her skin.
 
 After the changes to her diet she has jumped several percentiles in weight. I would look into changing up some meds to help out.

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