NEED SOME ADVICE

[petnurse]

Liza: They cultured him again when we took him back at the beginning of this bug. He cultured staph for the second time. They put him on Bactrim because of the staph. When he finished Bactrim, they told us staph is also sensitive to Augmentin. No tests for RSV, but I do not think it is that.
<br />Harriett: I know the Pulmozyme will help. I was just nervous about starting it since it is not labeled for babies. i was glad to hear they would entertain the thought though. I think the thought on nebs has changed over the last year or so as far as the babies are concerned. I hope this will soon go away so I can stop worrying (for now)!

 

[hmw]

They don't start Pulmozyme on the little ones at our clinic until there is pulmonary involvement. I am not sure if they consider that to be the first exacerbation if they return to a baseline of 'no symptoms.' However, culturing a bug might be considered 'involvement'... not sure. By the time kids are 6 they start regardless of symptoms.

Thinking changing re. nebs for babies- what do you mean, specifically? To use them less? We aren't in that situation, obviously, but I am curious.

 

[hmw]

They don't start Pulmozyme on the little ones at our clinic until there is pulmonary involvement. I am not sure if they consider that to be the first exacerbation if they return to a baseline of 'no symptoms.' However, culturing a bug might be considered 'involvement'... not sure. By the time kids are 6 they start regardless of symptoms.

Thinking changing re. nebs for babies- what do you mean, specifically? To use them less? We aren't in that situation, obviously, but I am curious.

 

[hmw]

They don't start Pulmozyme on the little ones at our clinic until there is pulmonary involvement. I am not sure if they consider that to be the first exacerbation if they return to a baseline of 'no symptoms.' However, culturing a bug might be considered 'involvement'... not sure. By the time kids are 6 they start regardless of symptoms.
<br />
<br />Thinking changing re. nebs for babies- what do you mean, specifically? To use them less? We aren't in that situation, obviously, but I am curious.

 

[ehtansky21]

Have they mentioned hypertonic saline solution at all. My thought, is why not go for the more natural route first and see what that does??? We actually dilute the 7% for caleb with sterile saline solution..

blessings,
missa

 

[ehtansky21]

Have they mentioned hypertonic saline solution at all. My thought, is why not go for the more natural route first and see what that does??? We actually dilute the 7% for caleb with sterile saline solution..

blessings,
missa

 

[ehtansky21]

Have they mentioned hypertonic saline solution at all. My thought, is why not go for the more natural route first and see what that does??? We actually dilute the 7% for caleb with sterile saline solution..
<br />
<br />blessings,
<br />missa

 

[petnurse]

I was told by a local parent that has a 3 year old that just a few years ago, they started nebs on all cf babies very early.He told me that he thinks they have changed their thought on that, and now they wait. I am pretty sure it has something to do with the fact that so many children are diagnosed through newborn screen (such as Philip) that don't necessarily need nebs. This did not come from my doctor though...I have not had a chance to ask him.

 

[petnurse]

I was told by a local parent that has a 3 year old that just a few years ago, they started nebs on all cf babies very early.He told me that he thinks they have changed their thought on that, and now they wait. I am pretty sure it has something to do with the fact that so many children are diagnosed through newborn screen (such as Philip) that don't necessarily need nebs. This did not come from my doctor though...I have not had a chance to ask him.

 

[petnurse]

I was told by a local parent that has a 3 year old that just a few years ago, they started nebs on all cf babies very early.He told me that he thinks they have changed their thought on that, and now they wait. I am pretty sure it has something to do with the fact that so many children are diagnosed through newborn screen (such as Philip) that don't necessarily need nebs. This did not come from my doctor though...I have not had a chance to ask him.

 

[LouLou]

I'm surprised that petnurse says her son was prescribed 10 days of Bactrim. I thought it was standard to always do 14 days of any oral abx for cystics...adult or child.

Also, next time if your child is still coughing 3 days before the abx is up, call the doctor. This way (s)he can extend the script for another round. In your case, your doctor may have done this but since there was a break, he may have felt forced to change to Augmentin in order to not promote resistance.

 

[LouLou]

I'm surprised that petnurse says her son was prescribed 10 days of Bactrim. I thought it was standard to always do 14 days of any oral abx for cystics...adult or child.

Also, next time if your child is still coughing 3 days before the abx is up, call the doctor. This way (s)he can extend the script for another round. In your case, your doctor may have done this but since there was a break, he may have felt forced to change to Augmentin in order to not promote resistance.

 

[LouLou]

I'm surprised that petnurse says her son was prescribed 10 days of Bactrim. I thought it was standard to always do 14 days of any oral abx for cystics...adult or child.
<br />
<br />Also, next time if your child is still coughing 3 days before the abx is up, call the doctor. This way (s)he can extend the script for another round. In your case, your doctor may have done this but since there was a break, he may have felt forced to change to Augmentin in order to not promote resistance.

 

[pencf]

Sounds like you are doing everything Right! Pulmozyme will always help keep any secretions loose...so I definitely agree with that. As for cough, if your child diff. has CF, then no cough doesn't always mean there isn't anything going on in those airways. Remember a cough is a good sign. It means that the body is reacting to 'junk' in the airway, and wants it out.
As for admittance. My daughter doesn't exactly have a mild form of CF, however has been pretty healthy her 15 yrs in terms of hospitalizations. I can share that she has been admitted not looking sick, or even acting sick, yet being admitted (in hindsight) was Absolutely what was best for her.
Sounds like you have "Good" Mom intuition....stay in turned with that....you won't go wrong!

 

[pencf]

Sounds like you are doing everything Right! Pulmozyme will always help keep any secretions loose...so I definitely agree with that. As for cough, if your child diff. has CF, then no cough doesn't always mean there isn't anything going on in those airways. Remember a cough is a good sign. It means that the body is reacting to 'junk' in the airway, and wants it out.
As for admittance. My daughter doesn't exactly have a mild form of CF, however has been pretty healthy her 15 yrs in terms of hospitalizations. I can share that she has been admitted not looking sick, or even acting sick, yet being admitted (in hindsight) was Absolutely what was best for her.
Sounds like you have "Good" Mom intuition....stay in turned with that....you won't go wrong!

 

[pencf]

Sounds like you are doing everything Right! Pulmozyme will always help keep any secretions loose...so I definitely agree with that. As for cough, if your child diff. has CF, then no cough doesn't always mean there isn't anything going on in those airways. Remember a cough is a good sign. It means that the body is reacting to 'junk' in the airway, and wants it out.
<br />As for admittance. My daughter doesn't exactly have a mild form of CF, however has been pretty healthy her 15 yrs in terms of hospitalizations. I can share that she has been admitted not looking sick, or even acting sick, yet being admitted (in hindsight) was Absolutely what was best for her.
<br />Sounds like you have "Good" Mom intuition....stay in turned with that....you won't go wrong!

 

[Mommy2Zeke]

Yes... my 'mommy intuition' has never ever steered me wrong in 16 hospitalizations...so I agree with pencf. Go with it! Also, with that cold.. don't be afraid to suction him like crazy. He is not going to like it at all, but it has helped Zeke get over things so much faster if we aggressively suction him (4-5 times every 12 hours) if he has a head cold. I also agree with Loulou that 14 days of abx is the standard I've been told for cystics. We always do at least 14 days.

 

[Mommy2Zeke]

Yes... my 'mommy intuition' has never ever steered me wrong in 16 hospitalizations...so I agree with pencf. Go with it! Also, with that cold.. don't be afraid to suction him like crazy. He is not going to like it at all, but it has helped Zeke get over things so much faster if we aggressively suction him (4-5 times every 12 hours) if he has a head cold. I also agree with Loulou that 14 days of abx is the standard I've been told for cystics. We always do at least 14 days.

 

[Mommy2Zeke]

Yes... my 'mommy intuition' has never ever steered me wrong in 16 hospitalizations...so I agree with pencf. Go with it! Also, with that cold.. don't be afraid to suction him like crazy. He is not going to like it at all, but it has helped Zeke get over things so much faster if we aggressively suction him (4-5 times every 12 hours) if he has a head cold. I also agree with Loulou that 14 days of abx is the standard I've been told for cystics. We always do at least 14 days.

 

[hmw]

<div class="FTQUOTE"><begin quote>I'm surprised that petnurse says her son was prescribed 10 days of Bactrim. I thought it was standard to always do 14 days of any oral abx for cystics...adult or child.</end quote></div>
Before Emily's dx, courses of abx that were far too short led to SO many problems: being treated by her ped, he'd of course rx abx like he would for any other kid and give out 7 or 10 day scripts and naturally they were never enough. She'd just be starting to show improvement when she'd be done with the script, then things would blow back up again, and several days later she'd have to start all over again. It wasn't until we repeated the cycle for a couple years that the ped finally wised up and started prescribing longer courses the first time for her illnesses, with better results.

Her cf drs NEVER rx less than 14 days, more often it's 3 weeks now- 14 days of Bactrim after being on it multiple times doesn't work as well anymore or sometimes needs a followup of Keflex if she's only on it for the 14 days.