Pseudomonas Question

[crickit715]

from my understanding pseudomonas in a non cfer is not a big deal.....we actually probobly get it all of the time (because it is everywhere) and dont even know it. we can expell it by coughing and our cillia in our lungs and airways push it out, whereas the cf'ers cillia is covered with mucus and the psuedomonas attaches to the mucus and becomes an infection.

 

[Stormywen]

And so the big questin remains....does my son have CF or not. He has an appointment with his pediatrician today so we'll see if she's willing to order further testing. If she isn't I guess I have to wait until he's older and see if his lungs just get better magically.

Wendy

 

[Stormywen]

And so the big questin remains....does my son have CF or not. He has an appointment with his pediatrician today so we'll see if she's willing to order further testing. If she isn't I guess I have to wait until he's older and see if his lungs just get better magically.

Wendy

 

[Stormywen]

And so the big questin remains....does my son have CF or not. He has an appointment with his pediatrician today so we'll see if she's willing to order further testing. If she isn't I guess I have to wait until he's older and see if his lungs just get better magically.
<br />
<br />Wendy

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Stormywen</b></i>

And so the big questin remains....does my son have CF or not. He has an appointment with his pediatrician today so we'll see if she's willing to order further testing. If she isn't I guess I have to wait until he's older and see if his lungs just get better magically.</end quote></div>


Please, please, please do not do that. If your ped will not order the genetic test, find a doctor who will. Ask your ped to write in your child's file that he/she refused to order the test. If you don't need a referral for ins purposes, just make an appt. at your nearest CF clinic. Peds do not know enough about CF to be handling this.

Everyone breathes particles of contaminants all of the time. Most people (healthy people) do not have thick sticky mucus for bus to take up residence in. Obviously your child does. With all of the symptoms you've described, I feel it's imperative to get your son tested, and treated properly for the Pseudo. What the ped has prescribed is not likely to kill it.

It is so important to prevent damage to the lungs and other organs. Waiting until your child is older may cause him to lose lung function that he cannot get back!

Stacey

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Stormywen</b></i>

And so the big questin remains....does my son have CF or not. He has an appointment with his pediatrician today so we'll see if she's willing to order further testing. If she isn't I guess I have to wait until he's older and see if his lungs just get better magically.</end quote>


Please, please, please do not do that. If your ped will not order the genetic test, find a doctor who will. Ask your ped to write in your child's file that he/she refused to order the test. If you don't need a referral for ins purposes, just make an appt. at your nearest CF clinic. Peds do not know enough about CF to be handling this.

Everyone breathes particles of contaminants all of the time. Most people (healthy people) do not have thick sticky mucus for bus to take up residence in. Obviously your child does. With all of the symptoms you've described, I feel it's imperative to get your son tested, and treated properly for the Pseudo. What the ped has prescribed is not likely to kill it.

It is so important to prevent damage to the lungs and other organs. Waiting until your child is older may cause him to lose lung function that he cannot get back!

Stacey

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Stormywen</b></i>
<br />
<br />And so the big questin remains....does my son have CF or not. He has an appointment with his pediatrician today so we'll see if she's willing to order further testing. If she isn't I guess I have to wait until he's older and see if his lungs just get better magically.</end quote>
<br />
<br />
<br />Please, please, please do not do that. If your ped will not order the genetic test, find a doctor who will. Ask your ped to write in your child's file that he/she refused to order the test. If you don't need a referral for ins purposes, just make an appt. at your nearest CF clinic. Peds do not know enough about CF to be handling this.
<br />
<br />Everyone breathes particles of contaminants all of the time. Most people (healthy people) do not have thick sticky mucus for bus to take up residence in. Obviously your child does. With all of the symptoms you've described, I feel it's imperative to get your son tested, and treated properly for the Pseudo. What the ped has prescribed is not likely to kill it.
<br />
<br />It is so important to prevent damage to the lungs and other organs. Waiting until your child is older may cause him to lose lung function that he cannot get back!
<br />
<br />Stacey

 

[Ratatosk]

You're the "customer", you're PAYING for that peds appointment. So don't ask, tell him you want furthter testing. Based on his symptoms, to rule out CF, to find out why the heck he's been so sick, why he's culturing something normal people don't get.

If the doctor refuses, ask him to write that in your son's file "Patients mother requested further testing (genetic), and we refused because.." And if he refuses, IMO, find another doctor.

I'd also ask about what's being used to treat the pseudo.

Psuedo is everywhere -- it's in dirt, water... Our CF doctor once said that one could POUR pseudomonas down a normal person's throat and nothing would happen. But because of that extra thick mucus, it does tend to get trapped in a cf person's lungs.

 

[Ratatosk]

You're the "customer", you're PAYING for that peds appointment. So don't ask, tell him you want furthter testing. Based on his symptoms, to rule out CF, to find out why the heck he's been so sick, why he's culturing something normal people don't get.

If the doctor refuses, ask him to write that in your son's file "Patients mother requested further testing (genetic), and we refused because.." And if he refuses, IMO, find another doctor.

I'd also ask about what's being used to treat the pseudo.

Psuedo is everywhere -- it's in dirt, water... Our CF doctor once said that one could POUR pseudomonas down a normal person's throat and nothing would happen. But because of that extra thick mucus, it does tend to get trapped in a cf person's lungs.

 

[Ratatosk]

You're the "customer", you're PAYING for that peds appointment. So don't ask, tell him you want furthter testing. Based on his symptoms, to rule out CF, to find out why the heck he's been so sick, why he's culturing something normal people don't get.
<br />
<br />If the doctor refuses, ask him to write that in your son's file "Patients mother requested further testing (genetic), and we refused because.." And if he refuses, IMO, find another doctor.
<br />
<br />I'd also ask about what's being used to treat the pseudo.
<br />
<br />Psuedo is everywhere -- it's in dirt, water... Our CF doctor once said that one could POUR pseudomonas down a normal person's throat and nothing would happen. But because of that extra thick mucus, it does tend to get trapped in a cf person's lungs.
<br />
<br />

 

[hmw]

I agree with Liza and Stacey~ your son NEEDS genetic testing. Based on what you've posted elsewhere about his symptoms, to be culturing pseudomonas is a big red flag at this point for cystic fibrosis. It's such a CF-specific bug that finding it in someone's sputum culture, when combined with other symptoms, has been diagnostic.

Please be firm in telling the pediatrician that he needs genetic testing, and that you want him to be seen at your nearest accredited CF center, so a referral can be made if required by your insurance. When you call the CF center to make the appt for him to be seen, make sure you tell them that your child is colonized with pseudomonas in addition to the symptoms he has. That will likely get him seen faster, due to just how diagnostic that is.

In my opinion, the pediatrician is likely to be way out of his depth treating an infection like this. A run of the mill antibiotic used to treat a typical respiratory infection is not enough to treat pseudomonas, esp in a child that hasn't been getting daily airway clearance & preventative care.

Wishing the very best that you get answers soon to get your son the treatment he needs. <img src="i/expressions/rose.gif" border="0">

 

[hmw]

I agree with Liza and Stacey~ your son NEEDS genetic testing. Based on what you've posted elsewhere about his symptoms, to be culturing pseudomonas is a big red flag at this point for cystic fibrosis. It's such a CF-specific bug that finding it in someone's sputum culture, when combined with other symptoms, has been diagnostic.

Please be firm in telling the pediatrician that he needs genetic testing, and that you want him to be seen at your nearest accredited CF center, so a referral can be made if required by your insurance. When you call the CF center to make the appt for him to be seen, make sure you tell them that your child is colonized with pseudomonas in addition to the symptoms he has. That will likely get him seen faster, due to just how diagnostic that is.

In my opinion, the pediatrician is likely to be way out of his depth treating an infection like this. A run of the mill antibiotic used to treat a typical respiratory infection is not enough to treat pseudomonas, esp in a child that hasn't been getting daily airway clearance & preventative care.

Wishing the very best that you get answers soon to get your son the treatment he needs. <img src="i/expressions/rose.gif" border="0">

 

[hmw]

I agree with Liza and Stacey~ your son NEEDS genetic testing. Based on what you've posted elsewhere about his symptoms, to be culturing pseudomonas is a big red flag at this point for cystic fibrosis. It's such a CF-specific bug that finding it in someone's sputum culture, when combined with other symptoms, has been diagnostic.
<br />
<br />Please be firm in telling the pediatrician that he needs genetic testing, and that you want him to be seen at your nearest accredited CF center, so a referral can be made if required by your insurance. When you call the CF center to make the appt for him to be seen, make sure you tell them that your child is colonized with pseudomonas in addition to the symptoms he has. That will likely get him seen faster, due to just how diagnostic that is.
<br />
<br />In my opinion, the pediatrician is likely to be way out of his depth treating an infection like this. A run of the mill antibiotic used to treat a typical respiratory infection is not enough to treat pseudomonas, esp in a child that hasn't been getting daily airway clearance & preventative care.
<br />
<br />Wishing the very best that you get answers soon to get your son the treatment he needs. <img src="i/expressions/rose.gif" border="0">

 

[Stormywen]

Thank you everyone for your responses. I will post after his appointment this afternoon. I need to go put on my mommy "backbone" and get ready to go.

Wendy

 

[Stormywen]

Thank you everyone for your responses. I will post after his appointment this afternoon. I need to go put on my mommy "backbone" and get ready to go.

Wendy

 

[Stormywen]

Thank you everyone for your responses. I will post after his appointment this afternoon. I need to go put on my mommy "backbone" and get ready to go.
<br />
<br />Wendy

 

[zaj1139]

Yes we cannot stress enough to be proactive. Jaden was told for almost a year that he had child asthma, bronchitis "just a cold" etc, etc, etc. Even his 2nd to last ER visit his PF was at 45% and the dr refused to belive it saying the nurse's probably read it wrong or the machine was broke. (By the way they used two different machines and got the same results). Poop questions from the PCP? yea he poops he poops 6-7 times a day always runny, he's to short blah blah blah always was put down on his chart and NO ONE could put 2 and 2 together. By the time my daughter found someone who would at least give him chest xray he was probably a month or maybe even days away from dying. I will never in my life again trust what a physician says. We did that for a year and Jaden could have died. Be persistent, you know when things are not right!

 

[zaj1139]

Yes we cannot stress enough to be proactive. Jaden was told for almost a year that he had child asthma, bronchitis "just a cold" etc, etc, etc. Even his 2nd to last ER visit his PF was at 45% and the dr refused to belive it saying the nurse's probably read it wrong or the machine was broke. (By the way they used two different machines and got the same results). Poop questions from the PCP? yea he poops he poops 6-7 times a day always runny, he's to short blah blah blah always was put down on his chart and NO ONE could put 2 and 2 together. By the time my daughter found someone who would at least give him chest xray he was probably a month or maybe even days away from dying. I will never in my life again trust what a physician says. We did that for a year and Jaden could have died. Be persistent, you know when things are not right!

 

[zaj1139]

Yes we cannot stress enough to be proactive. Jaden was told for almost a year that he had child asthma, bronchitis "just a cold" etc, etc, etc. Even his 2nd to last ER visit his PF was at 45% and the dr refused to belive it saying the nurse's probably read it wrong or the machine was broke. (By the way they used two different machines and got the same results). Poop questions from the PCP? yea he poops he poops 6-7 times a day always runny, he's to short blah blah blah always was put down on his chart and NO ONE could put 2 and 2 together. By the time my daughter found someone who would at least give him chest xray he was probably a month or maybe even days away from dying. I will never in my life again trust what a physician says. We did that for a year and Jaden could have died. Be persistent, you know when things are not right!

 

[Stormywen]

My son is also quite small. Less than the 5th percentile for height and weight. He's almost 16 months old and he weighs 21 pounds. We were so excited when he broke the twenty pound mark! He has reflux and aspiration issues as well. Sounds like a lot of your children experience the same things.

Wendy