To: Parents of CF babies under 6 months of age

[eli]

Hi Rebecca,

You mention in your post that Keira, has a productive cough. Maybe that's why the docs have put her on the neb's etc.

What about chn that don't have a productive cough? My dd hardly ever coughs, and her chest alway's sound clear.

Does that matter? Does that make a difference?

Should she also be on a neb regardless?

Can someone please answer these ??? for me.

I will also ask at our clinic appointment in wed.

Thanks for any info/advice you can share.

 

[eli]

Hi Rebecca,

You mention in your post that Keira, has a productive cough. Maybe that's why the docs have put her on the neb's etc.

What about chn that don't have a productive cough? My dd hardly ever coughs, and her chest alway's sound clear.

Does that matter? Does that make a difference?

Should she also be on a neb regardless?

Can someone please answer these ??? for me.

I will also ask at our clinic appointment in wed.

Thanks for any info/advice you can share.

 

[JazzysMom]

The dilemma is if you want to minimize the subtle, but gradual increase in cough or wait until its apparent and treat it. Most of us feel that waiting risks having unnecessary lung damage. Another thought which may or may not apply to you daughter is that her cough might not be a lot because things are stuck so much that it cant move. Many times after having nebs (it might take a few times using them) that is loosens things up and the patient might actually sound worse then before the nebs. I am not a doctor nor do I know how her lungs look or sound. I just know that nebs are great as a preventative.

 

[JazzysMom]

The dilemma is if you want to minimize the subtle, but gradual increase in cough or wait until its apparent and treat it. Most of us feel that waiting risks having unnecessary lung damage. Another thought which may or may not apply to you daughter is that her cough might not be a lot because things are stuck so much that it cant move. Many times after having nebs (it might take a few times using them) that is loosens things up and the patient might actually sound worse then before the nebs. I am not a doctor nor do I know how her lungs look or sound. I just know that nebs are great as a preventative.

 

[JazzysMom]

The dilemma is if you want to minimize the subtle, but gradual increase in cough or wait until its apparent and treat it. Most of us feel that waiting risks having unnecessary lung damage. Another thought which may or may not apply to you daughter is that her cough might not be a lot because things are stuck so much that it cant move. Many times after having nebs (it might take a few times using them) that is loosens things up and the patient might actually sound worse then before the nebs. I am not a doctor nor do I know how her lungs look or sound. I just know that nebs are great as a preventative.

 

[Hughett]

We had our first baby little over 7 months ago. He is up to 3 capsules of Ultrase enzymes per feeding, some liquid vitamin, liquid iron drops, he was on some nebs when he had a cold but is now on tobi <img src="i/expressions/face-icon-small-sad.gif" border="0">, and we do the chest compressions every day. One thing my wife noticed was that after feedings sometimes he has some rumbles in his tummy area but for our baby its gas. He Cried when he had bad gas and we pushed in a little on his tummy ect... to get it out of him. CF babies and adults have bad gas. For us its ONE of the signs that we need to mess with the amount of enzymes we give our little guy. Thats just us though. Not giving advice here (I'm still new to this too). hmmmm.....looking at my signature I think I need to update it with a new picture. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Hughett]

We had our first baby little over 7 months ago. He is up to 3 capsules of Ultrase enzymes per feeding, some liquid vitamin, liquid iron drops, he was on some nebs when he had a cold but is now on tobi <img src="i/expressions/face-icon-small-sad.gif" border="0">, and we do the chest compressions every day. One thing my wife noticed was that after feedings sometimes he has some rumbles in his tummy area but for our baby its gas. He Cried when he had bad gas and we pushed in a little on his tummy ect... to get it out of him. CF babies and adults have bad gas. For us its ONE of the signs that we need to mess with the amount of enzymes we give our little guy. Thats just us though. Not giving advice here (I'm still new to this too). hmmmm.....looking at my signature I think I need to update it with a new picture. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Hughett]

We had our first baby little over 7 months ago. He is up to 3 capsules of Ultrase enzymes per feeding, some liquid vitamin, liquid iron drops, he was on some nebs when he had a cold but is now on tobi <img src="i/expressions/face-icon-small-sad.gif" border="0">, and we do the chest compressions every day. One thing my wife noticed was that after feedings sometimes he has some rumbles in his tummy area but for our baby its gas. He Cried when he had bad gas and we pushed in a little on his tummy ect... to get it out of him. CF babies and adults have bad gas. For us its ONE of the signs that we need to mess with the amount of enzymes we give our little guy. Thats just us though. Not giving advice here (I'm still new to this too). hmmmm.....looking at my signature I think I need to update it with a new picture. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[eli]

Hey Mel, I always said to her docs that i wamt to be proactive in her treatments.
They have just stated that she doesn't need to be on any right now.<img src="i/expressions/face-icon-small-confused.gif" border="0">

As for her lungs being packed with mucus, i don't think that that is the case with her. My reason for saying that is because when shse had her bronch done 1yr ago, they said her lungs look nice, pink and un touched.

But this is definitely something i wll discuss with the docs at clinic on Wed.

 

[eli]

Hey Mel, I always said to her docs that i wamt to be proactive in her treatments.
They have just stated that she doesn't need to be on any right now.<img src="i/expressions/face-icon-small-confused.gif" border="0">

As for her lungs being packed with mucus, i don't think that that is the case with her. My reason for saying that is because when shse had her bronch done 1yr ago, they said her lungs look nice, pink and un touched.

But this is definitely something i wll discuss with the docs at clinic on Wed.

 

[eli]

Hey Mel, I always said to her docs that i wamt to be proactive in her treatments.
They have just stated that she doesn't need to be on any right now.<img src="i/expressions/face-icon-small-confused.gif" border="0">

As for her lungs being packed with mucus, i don't think that that is the case with her. My reason for saying that is because when shse had her bronch done 1yr ago, they said her lungs look nice, pink and un touched.

But this is definitely something i wll discuss with the docs at clinic on Wed.

 

[datca1994]

Hello again! I have enjoyed reading your comments. Ratatosk-you mentioned that you gave enzymes according to weight. I brought this up with the nutrionist assigned to him at the CF clinic, and she agreed that we should increase his dosage. So now instead of a maximum of 10 he will take 2 Creon 5 brand enzymes before each feeding. Regarding the nebulizer, it is albuteral sulfate, 1.5ml once a day. It is fo preventative use, as there are no signs of mucus accumalation. I took a picture of him using it to show eli that even at such a young age it is done, but don't know how to upload it! The topic of different preventive care is very interesting. Also, related to parents of CF babies under 6 months old....how have you handled the end of parental leave? Does your child attend a daycare center?

Looking forward to reading about your experinences.

April in Virginia Beach....mom to 5 month old boy who is first in family (both sides) in over 100 hundred years to have CF!

 

[datca1994]

Hello again! I have enjoyed reading your comments. Ratatosk-you mentioned that you gave enzymes according to weight. I brought this up with the nutrionist assigned to him at the CF clinic, and she agreed that we should increase his dosage. So now instead of a maximum of 10 he will take 2 Creon 5 brand enzymes before each feeding. Regarding the nebulizer, it is albuteral sulfate, 1.5ml once a day. It is fo preventative use, as there are no signs of mucus accumalation. I took a picture of him using it to show eli that even at such a young age it is done, but don't know how to upload it! The topic of different preventive care is very interesting. Also, related to parents of CF babies under 6 months old....how have you handled the end of parental leave? Does your child attend a daycare center?

Looking forward to reading about your experinences.

April in Virginia Beach....mom to 5 month old boy who is first in family (both sides) in over 100 hundred years to have CF!

 

[datca1994]

Hello again! I have enjoyed reading your comments. Ratatosk-you mentioned that you gave enzymes according to weight. I brought this up with the nutrionist assigned to him at the CF clinic, and she agreed that we should increase his dosage. So now instead of a maximum of 10 he will take 2 Creon 5 brand enzymes before each feeding. Regarding the nebulizer, it is albuteral sulfate, 1.5ml once a day. It is fo preventative use, as there are no signs of mucus accumalation. I took a picture of him using it to show eli that even at such a young age it is done, but don't know how to upload it! The topic of different preventive care is very interesting. Also, related to parents of CF babies under 6 months old....how have you handled the end of parental leave? Does your child attend a daycare center?

Looking forward to reading about your experinences.

April in Virginia Beach....mom to 5 month old boy who is first in family (both sides) in over 100 hundred years to have CF!

 

[Ratatosk]

Someone else I think said they based amount of enzymes on weight, We did based on what he ate. Which drove me nuts 'cuz he was a terrible eater and we never knew how much he was going to eat. At first we were probably too cautious about increasing enzymes 'cuz that kid would poop 3 times during a diaper change. Bleah! I think he started out being on 1-2 pancrease mt4s and eventually increased it to 3-3 1/2 as he got older. Especially when we bumped up the calories in his formula by increasing the powder (as per the dietician) or adding cream (as per his doctor).

We've been doing CPT with albuterol and atrovent 3-4 times a day since he was about a week old.

I took 3 months of for parental leave. Prior to his birth it took me FOREVER to find day care. Be started off in the baby room of a daycare center -- one of 6 newborns. Now he hangs with a gang of seven, 3-4 year olds. That's his preschool class -- he still attends the center.

 

[Ratatosk]

Someone else I think said they based amount of enzymes on weight, We did based on what he ate. Which drove me nuts 'cuz he was a terrible eater and we never knew how much he was going to eat. At first we were probably too cautious about increasing enzymes 'cuz that kid would poop 3 times during a diaper change. Bleah! I think he started out being on 1-2 pancrease mt4s and eventually increased it to 3-3 1/2 as he got older. Especially when we bumped up the calories in his formula by increasing the powder (as per the dietician) or adding cream (as per his doctor).

We've been doing CPT with albuterol and atrovent 3-4 times a day since he was about a week old.

I took 3 months of for parental leave. Prior to his birth it took me FOREVER to find day care. Be started off in the baby room of a daycare center -- one of 6 newborns. Now he hangs with a gang of seven, 3-4 year olds. That's his preschool class -- he still attends the center.

 

[Ratatosk]

Someone else I think said they based amount of enzymes on weight, We did based on what he ate. Which drove me nuts 'cuz he was a terrible eater and we never knew how much he was going to eat. At first we were probably too cautious about increasing enzymes 'cuz that kid would poop 3 times during a diaper change. Bleah! I think he started out being on 1-2 pancrease mt4s and eventually increased it to 3-3 1/2 as he got older. Especially when we bumped up the calories in his formula by increasing the powder (as per the dietician) or adding cream (as per his doctor).

We've been doing CPT with albuterol and atrovent 3-4 times a day since he was about a week old.

I took 3 months of for parental leave. Prior to his birth it took me FOREVER to find day care. Be started off in the baby room of a daycare center -- one of 6 newborns. Now he hangs with a gang of seven, 3-4 year olds. That's his preschool class -- he still attends the center.

 

[mammaof3]

my little guy is 5 months and was on zantac for acid reflux, he has now been switched over to losec (stronger i guess) he also has had a chronic cough since he was 11 weeks old. He is currently on inhalers/nebulizer. Also he has always had green smelly stools and now is becoming very finicky with his food. The Dr. told me to switch him to Ailmentum a type of formula with no milk or soy in it, yet i havent noticed any difference in his eating and he still cries alot more then normal. He has droppeddown in the percentil for his weight drastically yet they still havent tested for cystic fibrosis. Do you think it's a possibility?

 

[mammaof3]

my little guy is 5 months and was on zantac for acid reflux, he has now been switched over to losec (stronger i guess) he also has had a chronic cough since he was 11 weeks old. He is currently on inhalers/nebulizer. Also he has always had green smelly stools and now is becoming very finicky with his food. The Dr. told me to switch him to Ailmentum a type of formula with no milk or soy in it, yet i havent noticed any difference in his eating and he still cries alot more then normal. He has droppeddown in the percentil for his weight drastically yet they still havent tested for cystic fibrosis. Do you think it's a possibility?

 

[mammaof3]

my little guy is 5 months and was on zantac for acid reflux, he has now been switched over to losec (stronger i guess) he also has had a chronic cough since he was 11 weeks old. He is currently on inhalers/nebulizer. Also he has always had green smelly stools and now is becoming very finicky with his food. The Dr. told me to switch him to Ailmentum a type of formula with no milk or soy in it, yet i havent noticed any difference in his eating and he still cries alot more then normal. He has droppeddown in the percentil for his weight drastically yet they still havent tested for cystic fibrosis. Do you think it's a possibility?