advice please

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scheesman

Guest
Hello my name Shawn. My wife and I have a 3 month old girl (Lily) w/cf. This is are only child. She still has not come home from the hospital yet. We are so new to cf. The docs suspected cf when the found a bowl blockage on the ultrasounds. To the day she has had 4 surgerys and she is doing pretty good, and is struggling with wieght. She has been stuck at 10lb/4oz for about 2 weeks. The docs don't seem to be too concerned about the cf, but we don't want to go to long without doing something about it. The tried to start her on enzymes but she didn't do so good with them. At what age should you start the beating of your child. ( I don't know the tems for this stuff yet) We have more ?'s but I can't think of them right now, it has been a long week and it's only Tuesday.( go figger) Please if anyone has advice, help us. This site has been great. Thanks Everyone, Shawn
 
S

scheesman

Guest
Hello my name Shawn. My wife and I have a 3 month old girl (Lily) w/cf. This is are only child. She still has not come home from the hospital yet. We are so new to cf. The docs suspected cf when the found a bowl blockage on the ultrasounds. To the day she has had 4 surgerys and she is doing pretty good, and is struggling with wieght. She has been stuck at 10lb/4oz for about 2 weeks. The docs don't seem to be too concerned about the cf, but we don't want to go to long without doing something about it. The tried to start her on enzymes but she didn't do so good with them. At what age should you start the beating of your child. ( I don't know the tems for this stuff yet) We have more ?'s but I can't think of them right now, it has been a long week and it's only Tuesday.( go figger) Please if anyone has advice, help us. This site has been great. Thanks Everyone, Shawn
 
S

scheesman

Guest
Hello my name Shawn. My wife and I have a 3 month old girl (Lily) w/cf. This is are only child. She still has not come home from the hospital yet. We are so new to cf. The docs suspected cf when the found a bowl blockage on the ultrasounds. To the day she has had 4 surgerys and she is doing pretty good, and is struggling with wieght. She has been stuck at 10lb/4oz for about 2 weeks. The docs don't seem to be too concerned about the cf, but we don't want to go to long without doing something about it. The tried to start her on enzymes but she didn't do so good with them. At what age should you start the beating of your child. ( I don't know the tems for this stuff yet) We have more ?'s but I can't think of them right now, it has been a long week and it's only Tuesday.( go figger) Please if anyone has advice, help us. This site has been great. Thanks Everyone, Shawn
 
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Nicole

New member
Our son was dignosed at 2 days old because of a bowel blockage (meconium ileus). He had surgery at 5 days to remove the blockage and about one week later started getting CPT (the "beatings"). He has been getting at least 2 treatments a day ever since.

What do you mean when you say the docs are not concerned about CF? Have you had any contact with a pulmonologist? Someone from your local CF center?
 
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Nicole

New member
Our son was dignosed at 2 days old because of a bowel blockage (meconium ileus). He had surgery at 5 days to remove the blockage and about one week later started getting CPT (the "beatings"). He has been getting at least 2 treatments a day ever since.

What do you mean when you say the docs are not concerned about CF? Have you had any contact with a pulmonologist? Someone from your local CF center?
 
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Nicole

New member
Our son was dignosed at 2 days old because of a bowel blockage (meconium ileus). He had surgery at 5 days to remove the blockage and about one week later started getting CPT (the "beatings"). He has been getting at least 2 treatments a day ever since.

What do you mean when you say the docs are not concerned about CF? Have you had any contact with a pulmonologist? Someone from your local CF center?
 
I

izemmom

New member
Our daughter was born with meconium illeus. She started on enzymes at 5 days old and with chest pt at 6 days old. What happened when they stared her on enzymes? What do you mean when you say she didn't do very well with them? And, like the last poster, I'd like to know if you have seen a cf team or a pulmonologist, yet. If not, insist that you do. I think most of us on here would agree that cf care must start as early as possible. We have all learned that we need to fight for our kids at one time or another, and we are here to support you as you fight for Lily.
 
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izemmom

New member
Our daughter was born with meconium illeus. She started on enzymes at 5 days old and with chest pt at 6 days old. What happened when they stared her on enzymes? What do you mean when you say she didn't do very well with them? And, like the last poster, I'd like to know if you have seen a cf team or a pulmonologist, yet. If not, insist that you do. I think most of us on here would agree that cf care must start as early as possible. We have all learned that we need to fight for our kids at one time or another, and we are here to support you as you fight for Lily.
 
I

izemmom

New member
Our daughter was born with meconium illeus. She started on enzymes at 5 days old and with chest pt at 6 days old. What happened when they stared her on enzymes? What do you mean when you say she didn't do very well with them? And, like the last poster, I'd like to know if you have seen a cf team or a pulmonologist, yet. If not, insist that you do. I think most of us on here would agree that cf care must start as early as possible. We have all learned that we need to fight for our kids at one time or another, and we are here to support you as you fight for Lily.
 
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Emily65Roses

New member
My parents beat me pretty much from day one (I was also diagnosed due to that bowel blockage - meconium ileus). I'm with whoever else mentioned it, you should check to see if you're going to an accredited CF center.

Find a <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/FindACareCenter/">CF center</a> near you.

Oh and in regards to the enzymes, if she "didn't do well" on them according to a CF doc, there are several brands. Like anything else, some work for individuals and some don't. If she doesn't respond well to one, they should try another.
 
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Emily65Roses

New member
My parents beat me pretty much from day one (I was also diagnosed due to that bowel blockage - meconium ileus). I'm with whoever else mentioned it, you should check to see if you're going to an accredited CF center.

Find a <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/FindACareCenter/">CF center</a> near you.

Oh and in regards to the enzymes, if she "didn't do well" on them according to a CF doc, there are several brands. Like anything else, some work for individuals and some don't. If she doesn't respond well to one, they should try another.
 
E

Emily65Roses

New member
My parents beat me pretty much from day one (I was also diagnosed due to that bowel blockage - meconium ileus). I'm with whoever else mentioned it, you should check to see if you're going to an accredited CF center.

Find a <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/FindACareCenter/">CF center</a> near you.

Oh and in regards to the enzymes, if she "didn't do well" on them according to a CF doc, there are several brands. Like anything else, some work for individuals and some don't. If she doesn't respond well to one, they should try another.
 
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westonsmom

New member
My son was born with a meconium illeus that led to an illeul atrisa. He also had to have a few surgeries and we were in the hospital for a LONG time. I feel for you because I have been there. We didn't find out West had CF until he was 5 months old. He was failing to thrive at the time. They switched his formula to Elecare which is completely broken down and has no milk product in it and that did the trick. He also started taking enzymes and we started beating him even though he didn't have any lung complications yet. Welcome to this site. You will find it helpful. If you want you can PM with any other questions. I am on frequently.
 
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westonsmom

New member
My son was born with a meconium illeus that led to an illeul atrisa. He also had to have a few surgeries and we were in the hospital for a LONG time. I feel for you because I have been there. We didn't find out West had CF until he was 5 months old. He was failing to thrive at the time. They switched his formula to Elecare which is completely broken down and has no milk product in it and that did the trick. He also started taking enzymes and we started beating him even though he didn't have any lung complications yet. Welcome to this site. You will find it helpful. If you want you can PM with any other questions. I am on frequently.
 
W

westonsmom

New member
My son was born with a meconium illeus that led to an illeul atrisa. He also had to have a few surgeries and we were in the hospital for a LONG time. I feel for you because I have been there. We didn't find out West had CF until he was 5 months old. He was failing to thrive at the time. They switched his formula to Elecare which is completely broken down and has no milk product in it and that did the trick. He also started taking enzymes and we started beating him even though he didn't have any lung complications yet. Welcome to this site. You will find it helpful. If you want you can PM with any other questions. I am on frequently.
 
R

Ratatosk

Administrator
Staff member
DS was diagnosed shortly after he was born due to a bowel obstruction caused by ME, atresia... He was given enzymes when he was about 10 days old, which is when we were finally able to give him formula -- prior to that TPN and pedialyte while he was healing. HATED, pregestimil also didn't do well with applesauce and enzymes, so the NICU nurse called up to the CF floor for suggestions -- baby food bananas on a tongue depresser. And we switched to regular formula.

He was getting percussion and nebs while recovering from surgery, once the CF diagnosis came thru -- about 5 days after he was born they started CPT. Since he kept getting infections during his recovery, we were in the NICU for 4 weeks, so we had the RTs show us how to do CPT -- pretty much been beating him 3-4 times a day with nebs since he was two weeks old. DH was a little braver, I was a little nervous with the broviac (central line) and all the wires.
 
R

Ratatosk

Administrator
Staff member
DS was diagnosed shortly after he was born due to a bowel obstruction caused by ME, atresia... He was given enzymes when he was about 10 days old, which is when we were finally able to give him formula -- prior to that TPN and pedialyte while he was healing. HATED, pregestimil also didn't do well with applesauce and enzymes, so the NICU nurse called up to the CF floor for suggestions -- baby food bananas on a tongue depresser. And we switched to regular formula.

He was getting percussion and nebs while recovering from surgery, once the CF diagnosis came thru -- about 5 days after he was born they started CPT. Since he kept getting infections during his recovery, we were in the NICU for 4 weeks, so we had the RTs show us how to do CPT -- pretty much been beating him 3-4 times a day with nebs since he was two weeks old. DH was a little braver, I was a little nervous with the broviac (central line) and all the wires.
 
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