Help Please!

[MyBabyCeline]

Hi all,

I apologize in advance for the long post, but I really have to ask all these unanswered questions that I have or I will literally go crazy! Either from not knowing enough or from thinking I'm not doing enough for my baby.

My daughter is almost 7 weeks old now and has no symptoms. We only perform CPT on her (which she absolutely hates!) twice a day and we're supposed to do a normal saline nebulizer twice daily if she coughs. I exclusively breastfeed her and according to that her doctor said it was unnecessary to do a fecal fat test now (is it?!), so I'm not really sure if she's PS or PI. I watch her stools and they look normal (yellow, sometimes greenish with no mucus or oil droplets) but I really don't have anything to compare to since she's my first baby. She is always gassy though but I'm not sure if this is relevant.

I would really appreciate your answers to my questions. I'm still very new to this and need all the teaching I could get. So here we go:

1) Did your baby have any symptoms when diagnosed? If not, when did he/she start showing symptoms?

2) When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit?

3) Are you going to be routinely checking at the center? If yes, how often?

4) What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary?

5) What are the daily treatments you were prescribed to do? And how many times a day should you do them?

6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?)

7) Do you perform CPT using your bare hands or do you use anything else like percussors? And how old should a child be before you can start using the vest?

8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally?

9) Are there any age limits to inhalation antibiotics?


I'm sorry again for talking a lot and asking too many questions. If there are any helpful links that you can refer me to I would really appreciate it too.

Thanks all,

 

[MyBabyCeline]

Hi all,

I apologize in advance for the long post, but I really have to ask all these unanswered questions that I have or I will literally go crazy! Either from not knowing enough or from thinking I'm not doing enough for my baby.

My daughter is almost 7 weeks old now and has no symptoms. We only perform CPT on her (which she absolutely hates!) twice a day and we're supposed to do a normal saline nebulizer twice daily if she coughs. I exclusively breastfeed her and according to that her doctor said it was unnecessary to do a fecal fat test now (is it?!), so I'm not really sure if she's PS or PI. I watch her stools and they look normal (yellow, sometimes greenish with no mucus or oil droplets) but I really don't have anything to compare to since she's my first baby. She is always gassy though but I'm not sure if this is relevant.

I would really appreciate your answers to my questions. I'm still very new to this and need all the teaching I could get. So here we go:

1) Did your baby have any symptoms when diagnosed? If not, when did he/she start showing symptoms?

2) When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit?

3) Are you going to be routinely checking at the center? If yes, how often?

4) What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary?

5) What are the daily treatments you were prescribed to do? And how many times a day should you do them?

6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?)

7) Do you perform CPT using your bare hands or do you use anything else like percussors? And how old should a child be before you can start using the vest?

8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally?

9) Are there any age limits to inhalation antibiotics?


I'm sorry again for talking a lot and asking too many questions. If there are any helpful links that you can refer me to I would really appreciate it too.

Thanks all,

 

[MyBabyCeline]

Hi all,
<br />
<br />I apologize in advance for the long post, but I really have to ask all these unanswered questions that I have or I will literally go crazy! Either from not knowing enough or from thinking I'm not doing enough for my baby.
<br />
<br />My daughter is almost 7 weeks old now and has no symptoms. We only perform CPT on her (which she absolutely hates!) twice a day and we're supposed to do a normal saline nebulizer twice daily if she coughs. I exclusively breastfeed her and according to that her doctor said it was unnecessary to do a fecal fat test now (is it?!), so I'm not really sure if she's PS or PI. I watch her stools and they look normal (yellow, sometimes greenish with no mucus or oil droplets) but I really don't have anything to compare to since she's my first baby. She is always gassy though but I'm not sure if this is relevant.
<br />
<br />I would really appreciate your answers to my questions. I'm still very new to this and need all the teaching I could get. So here we go:
<br />
<br />1) Did your baby have any symptoms when diagnosed? If not, when did he/she start showing symptoms?
<br />
<br />2) When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit?
<br />
<br />3) Are you going to be routinely checking at the center? If yes, how often?
<br />
<br />4) What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary?
<br />
<br />5) What are the daily treatments you were prescribed to do? And how many times a day should you do them?
<br />
<br />6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
<br />(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?)
<br />
<br />7) Do you perform CPT using your bare hands or do you use anything else like percussors? And how old should a child be before you can start using the vest?
<br />
<br />8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally?
<br />
<br />9) Are there any age limits to inhalation antibiotics?
<br />
<br />
<br />I'm sorry again for talking a lot and asking too many questions. If there are any helpful links that you can refer me to I would really appreciate it too.
<br />
<br />Thanks all,
<br />

 

[BaylorCrew07]

1) Did your baby have any symptoms when diagnosed? If not, when did he/she start showing symptoms? I did show symptoms as an infant -- I was losing weight, classified as failure to thrive, and got pnuemonia. HOWEVER, my sweat test was inconclusive and went on for 20+ years thinking I did NOT have CF and showed very few symptoms for most of my life -- just sinus infections & asthma, with occasionally digestive issues

2) When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit?
I was tested for CF at birth by 6 or so sweat tests, which were all inconclusive. After researching and going back to be retested 20 years later, they did a sweat test and a genetic test.

3) Are you going to be routinely checking at the center? If yes, how often? Yes, I go every 3 months

4) What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary? I'm not sure on this one; sorry

5) What are the daily treatments you were prescribed to do? And how many times a day should you do them? I do Xopenex, hypersal & pulmozyme - all twice a day. When I'm on Cayston (every other month) I do it 3x a day. I also take Mucinex twice a day, zithromax on M,W,F, singulair ever night, and advair twice a day.

6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?) I'm not sure on this one, but I would assume it depends on the doctor your seeing -- how proactive they want to be, etc, and the parents' decision to try and delay meds if they choose, etc. I really don't know though

7) Do you perform CPT using your bare hands or do you use anything else like percussors? And how old should a child be before you can start using the vest? I'm not sure how old a child will have to be before being able to fit into a vest, but I use the vest for my CPT sometimes -- not as often as a I should -- I use exercise as my main method of CPT (2-3 times a day), which my doctor is 100% ok with. If there is something in a specific place I feel, I have will have my family or bf hit that area if it's on my back to try and loosen it. I also have a percussor that works well too.

8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally? It really depends on what kind of infection, if it's something we culture on a regular basis, etc. I'm on inhaled antibiotics (previously TOBI, Cayston now) every other month ever since I cultured psuedomonas. Granted, it hasn't shown up on my culture results in over a year, but doctor recommended I stay on them as a preventative measue, and because it may still be in my lungs, just not have shown up on the culture. She gave me the option to stop abx and see if my pfts drop, but I chose to stay on them every other month. I take oral abx (ie - Cipro) if I get sinus infection, or something that has moved into my lungs and making me feel really bad. Somethimes it works out that I will be on oral & inhaled abx on the same time, and sometimes doctors will specifically prescribe both at the same time -- it really just depends what kind of infection you are dealing with.

9) Are there any age limits to inhalation antibiotics? no idea

Sorry I could not answer all of your questions since I do not have a young child with CF, but hopefully some of it was helpful. Best of luck to you & your family, and you are doing a great job of researching and being proactive!! <img src="i/expressions/heart.gif" border="0">

 

[BaylorCrew07]

1) Did your baby have any symptoms when diagnosed? If not, when did he/she start showing symptoms? I did show symptoms as an infant -- I was losing weight, classified as failure to thrive, and got pnuemonia. HOWEVER, my sweat test was inconclusive and went on for 20+ years thinking I did NOT have CF and showed very few symptoms for most of my life -- just sinus infections & asthma, with occasionally digestive issues

2) When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit?
I was tested for CF at birth by 6 or so sweat tests, which were all inconclusive. After researching and going back to be retested 20 years later, they did a sweat test and a genetic test.

3) Are you going to be routinely checking at the center? If yes, how often? Yes, I go every 3 months

4) What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary? I'm not sure on this one; sorry

5) What are the daily treatments you were prescribed to do? And how many times a day should you do them? I do Xopenex, hypersal & pulmozyme - all twice a day. When I'm on Cayston (every other month) I do it 3x a day. I also take Mucinex twice a day, zithromax on M,W,F, singulair ever night, and advair twice a day.

6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?) I'm not sure on this one, but I would assume it depends on the doctor your seeing -- how proactive they want to be, etc, and the parents' decision to try and delay meds if they choose, etc. I really don't know though

7) Do you perform CPT using your bare hands or do you use anything else like percussors? And how old should a child be before you can start using the vest? I'm not sure how old a child will have to be before being able to fit into a vest, but I use the vest for my CPT sometimes -- not as often as a I should -- I use exercise as my main method of CPT (2-3 times a day), which my doctor is 100% ok with. If there is something in a specific place I feel, I have will have my family or bf hit that area if it's on my back to try and loosen it. I also have a percussor that works well too.

8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally? It really depends on what kind of infection, if it's something we culture on a regular basis, etc. I'm on inhaled antibiotics (previously TOBI, Cayston now) every other month ever since I cultured psuedomonas. Granted, it hasn't shown up on my culture results in over a year, but doctor recommended I stay on them as a preventative measue, and because it may still be in my lungs, just not have shown up on the culture. She gave me the option to stop abx and see if my pfts drop, but I chose to stay on them every other month. I take oral abx (ie - Cipro) if I get sinus infection, or something that has moved into my lungs and making me feel really bad. Somethimes it works out that I will be on oral & inhaled abx on the same time, and sometimes doctors will specifically prescribe both at the same time -- it really just depends what kind of infection you are dealing with.

9) Are there any age limits to inhalation antibiotics? no idea

Sorry I could not answer all of your questions since I do not have a young child with CF, but hopefully some of it was helpful. Best of luck to you & your family, and you are doing a great job of researching and being proactive!! <img src="i/expressions/heart.gif" border="0">

 

[BaylorCrew07]

1) Did your baby have any symptoms when diagnosed? If not, when did he/she start showing symptoms? I did show symptoms as an infant -- I was losing weight, classified as failure to thrive, and got pnuemonia. HOWEVER, my sweat test was inconclusive and went on for 20+ years thinking I did NOT have CF and showed very few symptoms for most of my life -- just sinus infections & asthma, with occasionally digestive issues
<br />
<br />2) When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit?
<br />I was tested for CF at birth by 6 or so sweat tests, which were all inconclusive. After researching and going back to be retested 20 years later, they did a sweat test and a genetic test.
<br />
<br />3) Are you going to be routinely checking at the center? If yes, how often? Yes, I go every 3 months
<br />
<br />4) What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary? I'm not sure on this one; sorry
<br />
<br />5) What are the daily treatments you were prescribed to do? And how many times a day should you do them? I do Xopenex, hypersal & pulmozyme - all twice a day. When I'm on Cayston (every other month) I do it 3x a day. I also take Mucinex twice a day, zithromax on M,W,F, singulair ever night, and advair twice a day.
<br />
<br />6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
<br />(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?) I'm not sure on this one, but I would assume it depends on the doctor your seeing -- how proactive they want to be, etc, and the parents' decision to try and delay meds if they choose, etc. I really don't know though
<br />
<br />7) Do you perform CPT using your bare hands or do you use anything else like percussors? And how old should a child be before you can start using the vest? I'm not sure how old a child will have to be before being able to fit into a vest, but I use the vest for my CPT sometimes -- not as often as a I should -- I use exercise as my main method of CPT (2-3 times a day), which my doctor is 100% ok with. If there is something in a specific place I feel, I have will have my family or bf hit that area if it's on my back to try and loosen it. I also have a percussor that works well too.
<br />
<br />8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally? It really depends on what kind of infection, if it's something we culture on a regular basis, etc. I'm on inhaled antibiotics (previously TOBI, Cayston now) every other month ever since I cultured psuedomonas. Granted, it hasn't shown up on my culture results in over a year, but doctor recommended I stay on them as a preventative measue, and because it may still be in my lungs, just not have shown up on the culture. She gave me the option to stop abx and see if my pfts drop, but I chose to stay on them every other month. I take oral abx (ie - Cipro) if I get sinus infection, or something that has moved into my lungs and making me feel really bad. Somethimes it works out that I will be on oral & inhaled abx on the same time, and sometimes doctors will specifically prescribe both at the same time -- it really just depends what kind of infection you are dealing with.
<br />
<br />9) Are there any age limits to inhalation antibiotics? no idea
<br />
<br />Sorry I could not answer all of your questions since I do not have a young child with CF, but hopefully some of it was helpful. Best of luck to you & your family, and you are doing a great job of researching and being proactive!! <img src="i/expressions/heart.gif" border="0">

 

[hmw]

Emily was older when she was dx'ed but I'll help as much as I can with your questiosn!

#1: Symptoms came on gradually for Emily. She had NO symptoms that were obvious as CF as a baby. She had reflux but was otherwise very healthy as a baby, other symptoms did not present until age 3+.

#2: Our first visit was immediately following dx and every few months after.

#3: Yes, and it is routine in the US for CF centers to follow children every few months and do pretty typical monitoring of kids' growth, lung function, sputum cultures, etc.

#4: Parents with babies can give more input here.

#5: Airway clearance twice a day via vest w/albuterol & Pulmacort; increased when sick, Pulmozyme once a day. Emily is older and more symptomatic though.

#6: CF is a very individualized disease and people are affected differently, requiring different approaches based on age, symptoms, etc. At our center, Pulmozyme is started at approx age 6 or when respiratory involvement is apparent, whichever comes first. Bronchodilators are often the first thing rx'ed and then more added as the need becomes apparent (i.e. inhaled abx when bugs warranting them are cultured, inhaled steroids if inflammation becomes a problem, etc.)

#7: we were given a little rubber cup to hold when doing CPT. It makes CPT a lot easier to do (and more comfortable for her.) Vest~ once your child reaches a certain chest circumference they will be able to get one; many here started between 1-2yrs old. Insurance often covers them here in the US; this varies widely elsewhere.

#8: Inhaled abx are used long-term once bugs like pseudomonas are cultured. Other things on culture won't necessarily be treated unless your child is actively showing signs of illness, and oral abx may work just fine in those cases. Drs vary widely in their approach of treating certain bugs on a prophylactic basis.

#9: not that I'm aware of. As far as I know their use is based more on culture results than anything else.


Re. Fecal fat or fecal elastase testing~ this is helpful to determine whether or not your baby is pancreatic insufficient. How is her growth and weight gain? Is she taking enzymes? If you have any doubt there I would ask about it. Please continue to ask your questions- we are here to help as much as we can! The time surrounding dx is so overwhelming.

 

[hmw]

Emily was older when she was dx'ed but I'll help as much as I can with your questiosn!

#1: Symptoms came on gradually for Emily. She had NO symptoms that were obvious as CF as a baby. She had reflux but was otherwise very healthy as a baby, other symptoms did not present until age 3+.

#2: Our first visit was immediately following dx and every few months after.

#3: Yes, and it is routine in the US for CF centers to follow children every few months and do pretty typical monitoring of kids' growth, lung function, sputum cultures, etc.

#4: Parents with babies can give more input here.

#5: Airway clearance twice a day via vest w/albuterol & Pulmacort; increased when sick, Pulmozyme once a day. Emily is older and more symptomatic though.

#6: CF is a very individualized disease and people are affected differently, requiring different approaches based on age, symptoms, etc. At our center, Pulmozyme is started at approx age 6 or when respiratory involvement is apparent, whichever comes first. Bronchodilators are often the first thing rx'ed and then more added as the need becomes apparent (i.e. inhaled abx when bugs warranting them are cultured, inhaled steroids if inflammation becomes a problem, etc.)

#7: we were given a little rubber cup to hold when doing CPT. It makes CPT a lot easier to do (and more comfortable for her.) Vest~ once your child reaches a certain chest circumference they will be able to get one; many here started between 1-2yrs old. Insurance often covers them here in the US; this varies widely elsewhere.

#8: Inhaled abx are used long-term once bugs like pseudomonas are cultured. Other things on culture won't necessarily be treated unless your child is actively showing signs of illness, and oral abx may work just fine in those cases. Drs vary widely in their approach of treating certain bugs on a prophylactic basis.

#9: not that I'm aware of. As far as I know their use is based more on culture results than anything else.


Re. Fecal fat or fecal elastase testing~ this is helpful to determine whether or not your baby is pancreatic insufficient. How is her growth and weight gain? Is she taking enzymes? If you have any doubt there I would ask about it. Please continue to ask your questions- we are here to help as much as we can! The time surrounding dx is so overwhelming.

 

[hmw]

Emily was older when she was dx'ed but I'll help as much as I can with your questiosn!
<br />
<br />#1: Symptoms came on gradually for Emily. She had NO symptoms that were obvious as CF as a baby. She had reflux but was otherwise very healthy as a baby, other symptoms did not present until age 3+.
<br />
<br />#2: Our first visit was immediately following dx and every few months after.
<br />
<br />#3: Yes, and it is routine in the US for CF centers to follow children every few months and do pretty typical monitoring of kids' growth, lung function, sputum cultures, etc.
<br />
<br />#4: Parents with babies can give more input here.
<br />
<br />#5: Airway clearance twice a day via vest w/albuterol & Pulmacort; increased when sick, Pulmozyme once a day. Emily is older and more symptomatic though.
<br />
<br />#6: CF is a very individualized disease and people are affected differently, requiring different approaches based on age, symptoms, etc. At our center, Pulmozyme is started at approx age 6 or when respiratory involvement is apparent, whichever comes first. Bronchodilators are often the first thing rx'ed and then more added as the need becomes apparent (i.e. inhaled abx when bugs warranting them are cultured, inhaled steroids if inflammation becomes a problem, etc.)
<br />
<br />#7: we were given a little rubber cup to hold when doing CPT. It makes CPT a lot easier to do (and more comfortable for her.) Vest~ once your child reaches a certain chest circumference they will be able to get one; many here started between 1-2yrs old. Insurance often covers them here in the US; this varies widely elsewhere.
<br />
<br />#8: Inhaled abx are used long-term once bugs like pseudomonas are cultured. Other things on culture won't necessarily be treated unless your child is actively showing signs of illness, and oral abx may work just fine in those cases. Drs vary widely in their approach of treating certain bugs on a prophylactic basis.
<br />
<br />#9: not that I'm aware of. As far as I know their use is based more on culture results than anything else.
<br />
<br />
<br />Re. Fecal fat or fecal elastase testing~ this is helpful to determine whether or not your baby is pancreatic insufficient. How is her growth and weight gain? Is she taking enzymes? If you have any doubt there I would ask about it. Please continue to ask your questions- we are here to help as much as we can! The time surrounding dx is so overwhelming.
<br />
<br />

 

[ymikhale]

Here is a response from a european perspective:

1) <b>Did your baby have any symptoms when diagnosed</b>? No , my dd (3 y/o) did not have any respiratoty symptoms when diagnosed (via neonatal screening). Even now you would not know she has CF, she coughs when sick with a cold, that is all.

2) <b>When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit</b>?
We had a complete check up (xrays, sputum culture, blood tests, fecal test) when diagnosed.

3) <b>Are you going to be routinely checking at the center? If yes, how often? </b>
yes, regular visits allow to detect & treat complications early, which is the key to successful treatment. For most patients, once every 3 months is a standard but it depends on the current clinical status, weight gain etc. Also in some countries (Israel, Danmark), ALL patients are seen every month.

4) <b>What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary? </b>
Sputum culture is one of the main tests that allows to detect any bacteria that grow in the airways. It is done at every visit. I personally do it every month (we have a possibility to do ti at home) since my dd cultured pseudomonas(a rather nasty bug very common in CFers) with no symptoms - which answers the second part of your question

<b>5) What are the daily treatments you were prescribed to do? And how many times a day should you do them?</b>

We have CPT done by an respiratory therapist on a daily basis.

<b>6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?) </b>

Preventative treatments (pulmozyme, HTS) in very small children are somewhat controversal b/c many inhaled therapies have not been tested (or only very limited data exists)on small kids. In our case, we are waiting on the results of lung SCAN and if there are any abnormalities, our doctor considers that in this case the benefits outweigh the risks.



<b>8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally? </b>

It depends what you mean by prophylactically. If there is no bacteria or the numbers are low (and the patient is not showing symptoms), then usually no. For patients colonised with Pseudomonas it is common to prescribe preventative antibiotics to prevent it from overgrowing and causing damamge.

<b>And are they always inhalation antibiotics or could they be given orally? </b>
Depends on the type of bacteria. Staph is usually treated orally, but for pseudomonas there is no effective treatment by orals.

<b>9) Are there any age limits to inhalation antibiotics? </b>

I know that TOBI is usually prescribed for patients 6 yrs old and older, but if the patient cultures pseudomonas earlier, i think it is quite common to prescribe it anyway (they did for my dd and she tolerated it well).

 

[ymikhale]

Here is a response from a european perspective:

1) <b>Did your baby have any symptoms when diagnosed</b>? No , my dd (3 y/o) did not have any respiratoty symptoms when diagnosed (via neonatal screening). Even now you would not know she has CF, she coughs when sick with a cold, that is all.

2) <b>When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit</b>?
We had a complete check up (xrays, sputum culture, blood tests, fecal test) when diagnosed.

3) <b>Are you going to be routinely checking at the center? If yes, how often? </b>
yes, regular visits allow to detect & treat complications early, which is the key to successful treatment. For most patients, once every 3 months is a standard but it depends on the current clinical status, weight gain etc. Also in some countries (Israel, Danmark), ALL patients are seen every month.

4) <b>What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary? </b>
Sputum culture is one of the main tests that allows to detect any bacteria that grow in the airways. It is done at every visit. I personally do it every month (we have a possibility to do ti at home) since my dd cultured pseudomonas(a rather nasty bug very common in CFers) with no symptoms - which answers the second part of your question

<b>5) What are the daily treatments you were prescribed to do? And how many times a day should you do them?</b>

We have CPT done by an respiratory therapist on a daily basis.

<b>6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?) </b>

Preventative treatments (pulmozyme, HTS) in very small children are somewhat controversal b/c many inhaled therapies have not been tested (or only very limited data exists)on small kids. In our case, we are waiting on the results of lung SCAN and if there are any abnormalities, our doctor considers that in this case the benefits outweigh the risks.



<b>8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally? </b>

It depends what you mean by prophylactically. If there is no bacteria or the numbers are low (and the patient is not showing symptoms), then usually no. For patients colonised with Pseudomonas it is common to prescribe preventative antibiotics to prevent it from overgrowing and causing damamge.

<b>And are they always inhalation antibiotics or could they be given orally? </b>
Depends on the type of bacteria. Staph is usually treated orally, but for pseudomonas there is no effective treatment by orals.

<b>9) Are there any age limits to inhalation antibiotics? </b>

I know that TOBI is usually prescribed for patients 6 yrs old and older, but if the patient cultures pseudomonas earlier, i think it is quite common to prescribe it anyway (they did for my dd and she tolerated it well).

 

[ymikhale]

Here is a response from a european perspective:
<br />
<br />1) <b>Did your baby have any symptoms when diagnosed</b>? No , my dd (3 y/o) did not have any respiratoty symptoms when diagnosed (via neonatal screening). Even now you would not know she has CF, she coughs when sick with a cold, that is all.
<br />
<br />2) <b>When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit</b>?
<br />We had a complete check up (xrays, sputum culture, blood tests, fecal test) when diagnosed.
<br />
<br />3) <b>Are you going to be routinely checking at the center? If yes, how often? </b>
<br />yes, regular visits allow to detect & treat complications early, which is the key to successful treatment. For most patients, once every 3 months is a standard but it depends on the current clinical status, weight gain etc. Also in some countries (Israel, Danmark), ALL patients are seen every month.
<br />
<br />4) <b>What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary? </b>
<br />Sputum culture is one of the main tests that allows to detect any bacteria that grow in the airways. It is done at every visit. I personally do it every month (we have a possibility to do ti at home) since my dd cultured pseudomonas(a rather nasty bug very common in CFers) with no symptoms - which answers the second part of your question
<br />
<br /><b>5) What are the daily treatments you were prescribed to do? And how many times a day should you do them?</b>
<br />
<br />We have CPT done by an respiratory therapist on a daily basis.
<br />
<br /><b>6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
<br />(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?) </b>
<br />
<br />Preventative treatments (pulmozyme, HTS) in very small children are somewhat controversal b/c many inhaled therapies have not been tested (or only very limited data exists)on small kids. In our case, we are waiting on the results of lung SCAN and if there are any abnormalities, our doctor considers that in this case the benefits outweigh the risks.
<br />
<br />
<br />
<br /><b>8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally? </b>
<br />
<br />It depends what you mean by prophylactically. If there is no bacteria or the numbers are low (and the patient is not showing symptoms), then usually no. For patients colonised with Pseudomonas it is common to prescribe preventative antibiotics to prevent it from overgrowing and causing damamge.
<br />
<br /><b>And are they always inhalation antibiotics or could they be given orally? </b>
<br />Depends on the type of bacteria. Staph is usually treated orally, but for pseudomonas there is no effective treatment by orals.
<br />
<br /><b>9) Are there any age limits to inhalation antibiotics? </b>
<br />
<br />I know that TOBI is usually prescribed for patients 6 yrs old and older, but if the patient cultures pseudomonas earlier, i think it is quite common to prescribe it anyway (they did for my dd and she tolerated it well).
<br />

 

[MyBabyCeline]

Thank you all very much. You won't imagine how important and helpful your answers are to me. This is a really stressful and overwhelming time that I'm going through and the presence of such a supportive community is making it all seem a little bit easier.

Thank you Thank you Thank you...

 

[MyBabyCeline]

Thank you all very much. You won't imagine how important and helpful your answers are to me. This is a really stressful and overwhelming time that I'm going through and the presence of such a supportive community is making it all seem a little bit easier.

Thank you Thank you Thank you...

 

[MyBabyCeline]

Thank you all very much. You won't imagine how important and helpful your answers are to me. This is a really stressful and overwhelming time that I'm going through and the presence of such a supportive community is making it all seem a little bit easier.
<br />
<br />Thank you Thank you Thank you...

 

[dlo2977]

My daughter wasn't diagnosed until she was 2(she's 4 now).

1) Did your baby have any symptoms when diagnosed? If not, when did he/she start showing symptoms?
My daughter just had GI symptoms at the time of diagnosis (pooping 4+ times a day, loose stool and occasional oil in stool). Pooping several times a day and having liquidy yellow stool is normal for breastfed babies so I would think the oil or lack of weight gain would be what you would be looking for. My daughter's stool and weight gain was normal while being breastfed.
2) When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit?
Our first visit was right after diagnosis and now she goes every 3 months. They weigh her and do a throat culture every time and since she turned 4 she does pulm function tests. Once a year she has x-rays and blood work done.

3) Are you going to be routinely checking at the center? If yes, how often?
Every 3 months

4) What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary?
I would guess weight checks and throat cultures (not positive since my daughter was diagnosed at 2)

5) What are the daily treatments you were prescribed to do? And how many times a day should you do them?
We started off doing CPT with the cups once a day (she has no lung symptoms). We got her the Vest within a month of diagnosis and do the vest for 30 minutes a day. We up it if she is sick with a cold. 20-30 minutes once a day is the minimum on the vest for most kids who have no symptoms. If symptoms are present it is usually 2-3 times d ay for 20 minutes. We do albuterol nebs if she has a cold with a cough. Otherwise no other inhaled meds yet. I know some babies who are on pulmozyme -- prob depends on how much lung disease is present.

6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?)
It depends on the dr.

7) Do you perform CPT using your bare hands or do you use anything else like percussors? And how old should a child be before you can start using the vest?
I think 18 months is the youngest for the vest and they have to be a certain size.
8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally?
You can do inhaled and/or oral. In the US I believe they are usually given if something is cultured or maybe if the child has a bad upper respiratory infection. I know some other countries do them prophylactically.

9) Are there any age limits to inhalation antibiotics?
Don't know. Probably with certain ones.

 

[dlo2977]

My daughter wasn't diagnosed until she was 2(she's 4 now).

1) Did your baby have any symptoms when diagnosed? If not, when did he/she start showing symptoms?
My daughter just had GI symptoms at the time of diagnosis (pooping 4+ times a day, loose stool and occasional oil in stool). Pooping several times a day and having liquidy yellow stool is normal for breastfed babies so I would think the oil or lack of weight gain would be what you would be looking for. My daughter's stool and weight gain was normal while being breastfed.
2) When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit?
Our first visit was right after diagnosis and now she goes every 3 months. They weigh her and do a throat culture every time and since she turned 4 she does pulm function tests. Once a year she has x-rays and blood work done.

3) Are you going to be routinely checking at the center? If yes, how often?
Every 3 months

4) What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary?
I would guess weight checks and throat cultures (not positive since my daughter was diagnosed at 2)

5) What are the daily treatments you were prescribed to do? And how many times a day should you do them?
We started off doing CPT with the cups once a day (she has no lung symptoms). We got her the Vest within a month of diagnosis and do the vest for 30 minutes a day. We up it if she is sick with a cold. 20-30 minutes once a day is the minimum on the vest for most kids who have no symptoms. If symptoms are present it is usually 2-3 times d ay for 20 minutes. We do albuterol nebs if she has a cold with a cough. Otherwise no other inhaled meds yet. I know some babies who are on pulmozyme -- prob depends on how much lung disease is present.

6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?)
It depends on the dr.

7) Do you perform CPT using your bare hands or do you use anything else like percussors? And how old should a child be before you can start using the vest?
I think 18 months is the youngest for the vest and they have to be a certain size.
8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally?
You can do inhaled and/or oral. In the US I believe they are usually given if something is cultured or maybe if the child has a bad upper respiratory infection. I know some other countries do them prophylactically.

9) Are there any age limits to inhalation antibiotics?
Don't know. Probably with certain ones.

 

[dlo2977]

My daughter wasn't diagnosed until she was 2(she's 4 now).
<br />
<br />1) Did your baby have any symptoms when diagnosed? If not, when did he/she start showing symptoms?
<br />My daughter just had GI symptoms at the time of diagnosis (pooping 4+ times a day, loose stool and occasional oil in stool). Pooping several times a day and having liquidy yellow stool is normal for breastfed babies so I would think the oil or lack of weight gain would be what you would be looking for. My daughter's stool and weight gain was normal while being breastfed.
<br />2) When was your first visit to a CF center? And what procedures/tests were performed on your baby at that visit?
<br />Our first visit was right after diagnosis and now she goes every 3 months. They weigh her and do a throat culture every time and since she turned 4 she does pulm function tests. Once a year she has x-rays and blood work done.
<br />
<br />3) Are you going to be routinely checking at the center? If yes, how often?
<br />Every 3 months
<br />
<br />4) What are the routine tests that should be performed on any baby with CF? How often should they be done? And does having no symptoms mean they are unnecessary?
<br />I would guess weight checks and throat cultures (not positive since my daughter was diagnosed at 2)
<br />
<br />5) What are the daily treatments you were prescribed to do? And how many times a day should you do them?
<br />We started off doing CPT with the cups once a day (she has no lung symptoms). We got her the Vest within a month of diagnosis and do the vest for 30 minutes a day. We up it if she is sick with a cold. 20-30 minutes once a day is the minimum on the vest for most kids who have no symptoms. If symptoms are present it is usually 2-3 times d ay for 20 minutes. We do albuterol nebs if she has a cold with a cough. Otherwise no other inhaled meds yet. I know some babies who are on pulmozyme -- prob depends on how much lung disease is present.
<br />
<br />6) Why are some children prescribed inhalation treatments (normal or hypertonic saline and pulmozyme)? While others only require CPT? Does it have anything to do with them showing symptoms or not?
<br />(I'm asking this because my dd's doctor said we should give her normal saline treatments if she coughs, which she does but only once or twice a day. But then don't all babies cough at least once or twice a day?! Whether they have CF or not? I'm really confused should I give her the normal saline treatment or is it unnecessary?)
<br />It depends on the dr.
<br />
<br />7) Do you perform CPT using your bare hands or do you use anything else like percussors? And how old should a child be before you can start using the vest?
<br />I think 18 months is the youngest for the vest and they have to be a certain size.
<br />8) Are antibiotics ever prescribed prophylactically? Or is it only when a child has an infection or is culturing a certain type of bacteria? And are they always inhalation antibiotics or could they be given orally?
<br />You can do inhaled and/or oral. In the US I believe they are usually given if something is cultured or maybe if the child has a bad upper respiratory infection. I know some other countries do them prophylactically.
<br />
<br />9) Are there any age limits to inhalation antibiotics?
<br />Don't know. Probably with certain ones.