Pseudomonas Question UPDATE

[Stormywen]

The doctor agreed that we should do another sweat test since my son cultured Pseudomonas. I asked her if we could do genetic testing if this sweat test comes back negative like the first one and she said probably not...she'd have to think about it. She also commented that since he seems to have some fat on him he probably doesn't have CF because CF patients are really skinny. :-( I'm going to have to figure out a plan of action if this test comes back negative too.

Wendy

 

[Stormywen]

The doctor agreed that we should do another sweat test since my son cultured Pseudomonas. I asked her if we could do genetic testing if this sweat test comes back negative like the first one and she said probably not...she'd have to think about it. She also commented that since he seems to have some fat on him he probably doesn't have CF because CF patients are really skinny. :-( I'm going to have to figure out a plan of action if this test comes back negative too.

Wendy

 

[Stormywen]

The doctor agreed that we should do another sweat test since my son cultured Pseudomonas. I asked her if we could do genetic testing if this sweat test comes back negative like the first one and she said probably not...she'd have to think about it. She also commented that since he seems to have some fat on him he probably doesn't have CF because CF patients are really skinny. :-( I'm going to have to figure out a plan of action if this test comes back negative too.
<br />
<br />Wendy

 

[AbsintheMinded]

Don't be afraid to ask for a second opinion! If your son is pancreatic sufficient he wouldn't be skinny. It's imprudent of this Dr to make assumptions about your childs health, and she should do everything possible to rule out CF if she doesn't believe he has it.

 

[AbsintheMinded]

Don't be afraid to ask for a second opinion! If your son is pancreatic sufficient he wouldn't be skinny. It's imprudent of this Dr to make assumptions about your childs health, and she should do everything possible to rule out CF if she doesn't believe he has it.

 

[AbsintheMinded]

Don't be afraid to ask for a second opinion! If your son is pancreatic sufficient he wouldn't be skinny. It's imprudent of this Dr to make assumptions about your childs health, and she should do everything possible to rule out CF if she doesn't believe he has it.

 

[JORDYSMOM]

That doctor doesn't know CF. Not all CF patients are really skinny. That is one of the most rediculous statements I've heard. Some people with CF are pancreatic sufficient, meaning theirs works, and they do not have malnutrition issues. My son is one of them! That comment is proof of how ignorant this doctor is of the facts about CF.

I strongly urge you to get your son to a CF clinic. That psuedo he is culturing that is not being properly treated, is causing damage to his lungs.

Stacey

 

[JORDYSMOM]

That doctor doesn't know CF. Not all CF patients are really skinny. That is one of the most rediculous statements I've heard. Some people with CF are pancreatic sufficient, meaning theirs works, and they do not have malnutrition issues. My son is one of them! That comment is proof of how ignorant this doctor is of the facts about CF.

I strongly urge you to get your son to a CF clinic. That psuedo he is culturing that is not being properly treated, is causing damage to his lungs.

Stacey

 

[JORDYSMOM]

That doctor doesn't know CF. Not all CF patients are really skinny. That is one of the most rediculous statements I've heard. Some people with CF are pancreatic sufficient, meaning theirs works, and they do not have malnutrition issues. My son is one of them! That comment is proof of how ignorant this doctor is of the facts about CF.
<br />
<br />I strongly urge you to get your son to a CF clinic. That psuedo he is culturing that is not being properly treated, is causing damage to his lungs.
<br />
<br />Stacey

 

[hmw]

Ummmm.... not all cf patients are really skinny (or even have digestive symptoms or pancreatic insufficiency, esp early on), just like not all cf patients present with lung issues (some have digestive issues early on and no respiratory symptoms!) I believe you mentioned in another post, though, that he's only in the 5-10th% for growth, and if ht and wt match percentiles, of course he won't look 'skinny.' However, to be so small for his age IS of concern.

The pediatrician is not an expert in CF. He has too many concerning symptoms to let go and if she tries to deny this testing, make her put it in writing in his chart that you have asked for the genetic testing due to his culturing pseudomonas and having multiple other symptoms of concern and that she is denying it and whatever her reason for denying it is. There are many people with CF that have normal sweat tests.

I would seek a 2nd opinion if the ped is not cooperative. I would also look into what your insurance requires when it comes to seeing specialists. If you are able to get to a CF center without the ped sending you there, I would strongly suggest doing so. If possible, call an accredited CF center, ask to talk to the nurse (not just the scheduling secretary), explain both what is going on with your son as well as how the ped has handled it, and see what they say.

Wishing the very best. <img src="i/expressions/rose.gif" border="0">

 

[hmw]

Ummmm.... not all cf patients are really skinny (or even have digestive symptoms or pancreatic insufficiency, esp early on), just like not all cf patients present with lung issues (some have digestive issues early on and no respiratory symptoms!) I believe you mentioned in another post, though, that he's only in the 5-10th% for growth, and if ht and wt match percentiles, of course he won't look 'skinny.' However, to be so small for his age IS of concern.

The pediatrician is not an expert in CF. He has too many concerning symptoms to let go and if she tries to deny this testing, make her put it in writing in his chart that you have asked for the genetic testing due to his culturing pseudomonas and having multiple other symptoms of concern and that she is denying it and whatever her reason for denying it is. There are many people with CF that have normal sweat tests.

I would seek a 2nd opinion if the ped is not cooperative. I would also look into what your insurance requires when it comes to seeing specialists. If you are able to get to a CF center without the ped sending you there, I would strongly suggest doing so. If possible, call an accredited CF center, ask to talk to the nurse (not just the scheduling secretary), explain both what is going on with your son as well as how the ped has handled it, and see what they say.

Wishing the very best. <img src="i/expressions/rose.gif" border="0">

 

[hmw]

Ummmm.... not all cf patients are really skinny (or even have digestive symptoms or pancreatic insufficiency, esp early on), just like not all cf patients present with lung issues (some have digestive issues early on and no respiratory symptoms!) I believe you mentioned in another post, though, that he's only in the 5-10th% for growth, and if ht and wt match percentiles, of course he won't look 'skinny.' However, to be so small for his age IS of concern.
<br />
<br />The pediatrician is not an expert in CF. He has too many concerning symptoms to let go and if she tries to deny this testing, make her put it in writing in his chart that you have asked for the genetic testing due to his culturing pseudomonas and having multiple other symptoms of concern and that she is denying it and whatever her reason for denying it is. There are many people with CF that have normal sweat tests.
<br />
<br />I would seek a 2nd opinion if the ped is not cooperative. I would also look into what your insurance requires when it comes to seeing specialists. If you are able to get to a CF center without the ped sending you there, I would strongly suggest doing so. If possible, call an accredited CF center, ask to talk to the nurse (not just the scheduling secretary), explain both what is going on with your son as well as how the ped has handled it, and see what they say.
<br />
<br />Wishing the very best. <img src="i/expressions/rose.gif" border="0">

 

[Ratatosk]

It's also my understanding the sweat tests should be done at an accreditted cf facility.

As for not having cf due to not being overly skinny is ridiculous. I believe there are several individuals on this site who actually have issues with being overweight.

 

[Ratatosk]

It's also my understanding the sweat tests should be done at an accreditted cf facility.

As for not having cf due to not being overly skinny is ridiculous. I believe there are several individuals on this site who actually have issues with being overweight.

 

[Ratatosk]

It's also my understanding the sweat tests should be done at an accreditted cf facility.
<br />
<br />As for not having cf due to not being overly skinny is ridiculous. I believe there are several individuals on this site who actually have issues with being overweight.

 

[petnurse]

Just to give you an example...my son is 13 months old with CF...almost pancreatic sufficient, 98th percentile weight (always has been), is now considered "overweight", and has clear lungs. He also never produces mucus even when he is sick...zero cough. CF is different in everyone and certainly not what a pediatrician expects.

 

[petnurse]

Just to give you an example...my son is 13 months old with CF...almost pancreatic sufficient, 98th percentile weight (always has been), is now considered "overweight", and has clear lungs. He also never produces mucus even when he is sick...zero cough. CF is different in everyone and certainly not what a pediatrician expects.

 

[petnurse]

Just to give you an example...my son is 13 months old with CF...almost pancreatic sufficient, 98th percentile weight (always has been), is now considered "overweight", and has clear lungs. He also never produces mucus even when he is sick...zero cough. CF is different in everyone and certainly not what a pediatrician expects.

 

[BaylorCrew07]

This really irks me...I'm going to try to not go off on a tangent, but I can't believe your doctor said that!!

When I was getting my sweat test (at age 20) for CF the nurse doing the sweat test told my dad "yeah, I don't know why they're even testing her, she looks too healthy to have CF, I'm sure she doesn't have it and you shouldn't have anything to worry about" REALLY?!?! So of course my dad keeps repeating that, and is shocked when sweat test comes back positive (barely over inconclusive) and genetic test comes back positive. These people are clearly not familiar with CF and the many different ways it manifests itself in different individuals.

I'm not overweight, but at times in my life I was. Also, I was failure to thrive at birth and could not gain weight, but am now pancreatic sufficient and have no problem gaining weight - actually try to keep it off <img src="i/expressions/face-icon-small-smile.gif" border="0">

All that to say, if this doctor does not authorize further testing, PLEASE pursue testing for another doctor/CF center who is familiar with the disease and will listen to your questions/concerns. <3 sorry for the bit of a rant, and wishing you the best of luck finding answers for your son

 

[BaylorCrew07]

This really irks me...I'm going to try to not go off on a tangent, but I can't believe your doctor said that!!

When I was getting my sweat test (at age 20) for CF the nurse doing the sweat test told my dad "yeah, I don't know why they're even testing her, she looks too healthy to have CF, I'm sure she doesn't have it and you shouldn't have anything to worry about" REALLY?!?! So of course my dad keeps repeating that, and is shocked when sweat test comes back positive (barely over inconclusive) and genetic test comes back positive. These people are clearly not familiar with CF and the many different ways it manifests itself in different individuals.

I'm not overweight, but at times in my life I was. Also, I was failure to thrive at birth and could not gain weight, but am now pancreatic sufficient and have no problem gaining weight - actually try to keep it off <img src="i/expressions/face-icon-small-smile.gif" border="0">

All that to say, if this doctor does not authorize further testing, PLEASE pursue testing for another doctor/CF center who is familiar with the disease and will listen to your questions/concerns. <3 sorry for the bit of a rant, and wishing you the best of luck finding answers for your son