Elevated IRT levels, trying to keep it together

[Mommafirst]

I'm sorry you have a confirmed diagnosis. My daughter also tested to be borderline normal for pancreatic sufficiency. We didn't add enzymes until about a year old when her weight gain got sluggish. We did not start any nebulized medicines until her first chest cold at around 6 months of age. She didn't go on antibiotics until she needed them to kick that cold when they cultured her and found staph aureus.

It sounds like you are working hard to keep the CF docs accountable for your daughter's care. This will be your daughter's most needed tool. While some may say that they could start a basic neb with the CPT now, it really isn't necessary until she has some chest congestion or has airway inflamation.

You will get lots of opinions about how you should socialize and who can be near your daughter. Ultimately, keeping her in a bubble doesn't do her or anyone else any good. As long as those kids she is near are not ill and everyone follows normal baby protocol of washing their hands before touching her, there isn't much more you can do. I would invest in a lot of hand sanitizer and encourage people coming into your house or playing with the baby to sanitize frequently.

 

[Mommafirst]

I'm sorry you have a confirmed diagnosis. My daughter also tested to be borderline normal for pancreatic sufficiency. We didn't add enzymes until about a year old when her weight gain got sluggish. We did not start any nebulized medicines until her first chest cold at around 6 months of age. She didn't go on antibiotics until she needed them to kick that cold when they cultured her and found staph aureus.
<br />
<br />It sounds like you are working hard to keep the CF docs accountable for your daughter's care. This will be your daughter's most needed tool. While some may say that they could start a basic neb with the CPT now, it really isn't necessary until she has some chest congestion or has airway inflamation.
<br />
<br />You will get lots of opinions about how you should socialize and who can be near your daughter. Ultimately, keeping her in a bubble doesn't do her or anyone else any good. As long as those kids she is near are not ill and everyone follows normal baby protocol of washing their hands before touching her, there isn't much more you can do. I would invest in a lot of hand sanitizer and encourage people coming into your house or playing with the baby to sanitize frequently.

 

[kellyga]

Sorry to hear that her diagnosis was confirmed. It is a very stressful time trying to figure everything out and take in so much information all at once. What you described is definitely in the range of normal CF infant care. Some clinics and doctors start children very young on preventative type nebulizers, but my daughter is 3 and still does not do nebs regularly, only if she is sick. This seems to be the major difference among the little ones. Just keep the lines of communication open with your doctor, ask questions, and do your own research. It seems that as long as your child is healthy, they will really be focusing on her weight and overall growth in the early years. I think it's fair to say that many of the sinus and lung issues start showing up later (of course, each case is very different).

When they are really little, it can be a good idea to keep them away from germy places during cold and flu season, but other than that, just lots of hand sanitizer and hand washing. Educate your family and friends that they need to keep away if sick. You do what you can to protect them, but have to live your life as well.

All the terms, therapies, and basics will sink in naturally over time. Try to enjoy this time with her, and not worry too much (easier said than done, I know). My little girl is 3.5 years old and has been very healthy. She is growing well and very happy. She does her vest therapy twice a day and takes her pills, but other than that, she is living a normal life. Going to preschool and making friends. CF does become your new normal eventually. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kellyga]

Sorry to hear that her diagnosis was confirmed. It is a very stressful time trying to figure everything out and take in so much information all at once. What you described is definitely in the range of normal CF infant care. Some clinics and doctors start children very young on preventative type nebulizers, but my daughter is 3 and still does not do nebs regularly, only if she is sick. This seems to be the major difference among the little ones. Just keep the lines of communication open with your doctor, ask questions, and do your own research. It seems that as long as your child is healthy, they will really be focusing on her weight and overall growth in the early years. I think it's fair to say that many of the sinus and lung issues start showing up later (of course, each case is very different).

When they are really little, it can be a good idea to keep them away from germy places during cold and flu season, but other than that, just lots of hand sanitizer and hand washing. Educate your family and friends that they need to keep away if sick. You do what you can to protect them, but have to live your life as well.

All the terms, therapies, and basics will sink in naturally over time. Try to enjoy this time with her, and not worry too much (easier said than done, I know). My little girl is 3.5 years old and has been very healthy. She is growing well and very happy. She does her vest therapy twice a day and takes her pills, but other than that, she is living a normal life. Going to preschool and making friends. CF does become your new normal eventually. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kellyga]

Sorry to hear that her diagnosis was confirmed. It is a very stressful time trying to figure everything out and take in so much information all at once. What you described is definitely in the range of normal CF infant care. Some clinics and doctors start children very young on preventative type nebulizers, but my daughter is 3 and still does not do nebs regularly, only if she is sick. This seems to be the major difference among the little ones. Just keep the lines of communication open with your doctor, ask questions, and do your own research. It seems that as long as your child is healthy, they will really be focusing on her weight and overall growth in the early years. I think it's fair to say that many of the sinus and lung issues start showing up later (of course, each case is very different).
<br />
<br />When they are really little, it can be a good idea to keep them away from germy places during cold and flu season, but other than that, just lots of hand sanitizer and hand washing. Educate your family and friends that they need to keep away if sick. You do what you can to protect them, but have to live your life as well.
<br />
<br />All the terms, therapies, and basics will sink in naturally over time. Try to enjoy this time with her, and not worry too much (easier said than done, I know). My little girl is 3.5 years old and has been very healthy. She is growing well and very happy. She does her vest therapy twice a day and takes her pills, but other than that, she is living a normal life. Going to preschool and making friends. CF does become your new normal eventually. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ymikhale]

Sorry to hear about your diagnosis. You must be really overwhelmed but it will get better with time. I agree with other posters, you really have to be involved and ask your doctors question about why they do this and don't do that etc. In my experience it is imperative to assure she gets the best care possible (after all the doctors are human).

As to nebs and stuff, I am not in the US either and my dd (3.5 y/o) does not get any nebs yet, she never had pneumonia (touch wood) but had bronchitis. Our doctor believes that at this point the risk of introducing bugs through nebulizing outweighs the potentail benefits, but that is just one opinion. In the US I think it is more common to get nebs very early for prevention, but again that depends on the doctor.

Where antibiotics are concerned, if her sputum culture does not show any germs, she will not get any. If it doesn then depending on the bug and on her symptoms whe might get one. Again that might depend on the doctor, some are more aggressive than others.

 

[ymikhale]

Sorry to hear about your diagnosis. You must be really overwhelmed but it will get better with time. I agree with other posters, you really have to be involved and ask your doctors question about why they do this and don't do that etc. In my experience it is imperative to assure she gets the best care possible (after all the doctors are human).

As to nebs and stuff, I am not in the US either and my dd (3.5 y/o) does not get any nebs yet, she never had pneumonia (touch wood) but had bronchitis. Our doctor believes that at this point the risk of introducing bugs through nebulizing outweighs the potentail benefits, but that is just one opinion. In the US I think it is more common to get nebs very early for prevention, but again that depends on the doctor.

Where antibiotics are concerned, if her sputum culture does not show any germs, she will not get any. If it doesn then depending on the bug and on her symptoms whe might get one. Again that might depend on the doctor, some are more aggressive than others.

 

[ymikhale]

Sorry to hear about your diagnosis. You must be really overwhelmed but it will get better with time. I agree with other posters, you really have to be involved and ask your doctors question about why they do this and don't do that etc. In my experience it is imperative to assure she gets the best care possible (after all the doctors are human).
<br />
<br />As to nebs and stuff, I am not in the US either and my dd (3.5 y/o) does not get any nebs yet, she never had pneumonia (touch wood) but had bronchitis. Our doctor believes that at this point the risk of introducing bugs through nebulizing outweighs the potentail benefits, but that is just one opinion. In the US I think it is more common to get nebs very early for prevention, but again that depends on the doctor.
<br />
<br />Where antibiotics are concerned, if her sputum culture does not show any germs, she will not get any. If it doesn then depending on the bug and on her symptoms whe might get one. Again that might depend on the doctor, some are more aggressive than others.

 

[Ratatosk]

We started doing CPT for 15-20 minutes 4 times a day with albuterol and atrovent when he was a week old. Very agressive doctor and then when he was 2 months old he got bronchitis probably caused by a bug he picked up in the NICU. When I went back to work after 3 month maternity we dropped it down to 3 times a day. Right away in the morning, afterwork and before bed. Local CF doctor don't push cpt or nebs unless there's pneumonia and a friend of mine knows of a family in her church in which the teenage son JUST got a vest and the daughter doesn't do CPT at all.

IMO, it's important to practice good lung care. Too keep the lungs happy and healthy AND to get her used to it. DS used to fall asleep during CPT, it seemed to calm him.

 

[Ratatosk]

We started doing CPT for 15-20 minutes 4 times a day with albuterol and atrovent when he was a week old. Very agressive doctor and then when he was 2 months old he got bronchitis probably caused by a bug he picked up in the NICU. When I went back to work after 3 month maternity we dropped it down to 3 times a day. Right away in the morning, afterwork and before bed. Local CF doctor don't push cpt or nebs unless there's pneumonia and a friend of mine knows of a family in her church in which the teenage son JUST got a vest and the daughter doesn't do CPT at all.

IMO, it's important to practice good lung care. Too keep the lungs happy and healthy AND to get her used to it. DS used to fall asleep during CPT, it seemed to calm him.

 

[Ratatosk]

We started doing CPT for 15-20 minutes 4 times a day with albuterol and atrovent when he was a week old. Very agressive doctor and then when he was 2 months old he got bronchitis probably caused by a bug he picked up in the NICU. When I went back to work after 3 month maternity we dropped it down to 3 times a day. Right away in the morning, afterwork and before bed. Local CF doctor don't push cpt or nebs unless there's pneumonia and a friend of mine knows of a family in her church in which the teenage son JUST got a vest and the daughter doesn't do CPT at all.
<br />
<br />IMO, it's important to practice good lung care. Too keep the lungs happy and healthy AND to get her used to it. DS used to fall asleep during CPT, it seemed to calm him.

 

[kots66]

wow, thanks for all the insightful responses.

I was expecting to start with the enzymes, the neb and the antibiotics right away, right
after we were diagnosed at 1mo, but it looks like I was wrong. Our CF doctor told us pretty much
what you all describe, ie constantly check her sputum culture and take action depending on the germ,
don't start on enzymes until there's a weight gain problem, watch her closely when she catches her first cold.

Thanks again.

 

[kots66]

wow, thanks for all the insightful responses.

I was expecting to start with the enzymes, the neb and the antibiotics right away, right
after we were diagnosed at 1mo, but it looks like I was wrong. Our CF doctor told us pretty much
what you all describe, ie constantly check her sputum culture and take action depending on the germ,
don't start on enzymes until there's a weight gain problem, watch her closely when she catches her first cold.

Thanks again.

 

[kots66]

wow, thanks for all the insightful responses.
<br />
<br />I was expecting to start with the enzymes, the neb and the antibiotics right away, right
<br />after we were diagnosed at 1mo, but it looks like I was wrong. Our CF doctor told us pretty much
<br />what you all describe, ie constantly check her sputum culture and take action depending on the germ,
<br />don't start on enzymes until there's a weight gain problem, watch her closely when she catches her first cold.
<br />
<br />Thanks again.
<br />