3 Year old daughter with CF

[Liamsmommy]

I was doing some resurch on the net about pseudomonas and basicaly anyone with a weakened immune system can get this.
This is from
<a target=_blank class=ftalternatingbarlinklarge href="http://www.merck.com/mmhe/sec17/ch190/ch190o.html
">http://www.merck.com/mmhe/sec1...190/ch190o.html
</a>

"Pseudomonas can cause minor skin infection or serious, life-threatening illness. The most serious infections from Pseudomonas develop in debilitated and hospitalized people, particularly those with a weakened immune system. People with diabetes are particularly prone to Pseudomonas infections. Pseudomonas can infect the blood, skin, bones, ears, eyes, urinary tract, heart valves, and lungs"

I found alot of supporting medical web sites that also state that anyone can get this and that its mainly seen in people that have a weakened immune system I also found that people with CF are at a high risk of getting this becuase of there lungs not being as storng.
I hope this helps
Shawna

 

[Momto3]

Some other things to request testing on, if you haven't already are: primary immune deficiencies (PID), celiacs, and primary ciliary dyskinesia (PCD). Celiacs shares many GI symptoms with CF. People with PIDs or PCD can and do test positive for pseudo.
Good luck!

 

[Momto3]

Some other things to request testing on, if you haven't already are: primary immune deficiencies (PID), celiacs, and primary ciliary dyskinesia (PCD). Celiacs shares many GI symptoms with CF. People with PIDs or PCD can and do test positive for pseudo.
Good luck!

 

[Momto3]

Some other things to request testing on, if you haven't already are: primary immune deficiencies (PID), celiacs, and primary ciliary dyskinesia (PCD). Celiacs shares many GI symptoms with CF. People with PIDs or PCD can and do test positive for pseudo.
Good luck!

 

[briellemom]

Thank you so much for the feedback. Delaney is now doing Tobi twice a day for 28 days, then we go back in Feb. for a re-culture. I spoke with her genetic counselor and she said that Delaney had Gene Sequencing done, and they could find no mutations for CF. So it is possible that she was a rare mutation, which for now at least seems very mild. Thank you for the PID and PCD info. I think Delaney was tested for some of those, but I don't know how many, so I will find that out. She is completely void of any GI symptoms. Although she is slow to gain weight and is under the 3rd % on the growth curve--could that be a GI symptom? Her height is in about the 35th %. All her tests and enzmes and everything came back normal, as are her stools normal as well. The doctors are telling us there is no other reason for her to have pseudo than CF, so we are getting very confused.

 

[briellemom]

Thank you so much for the feedback. Delaney is now doing Tobi twice a day for 28 days, then we go back in Feb. for a re-culture. I spoke with her genetic counselor and she said that Delaney had Gene Sequencing done, and they could find no mutations for CF. So it is possible that she was a rare mutation, which for now at least seems very mild. Thank you for the PID and PCD info. I think Delaney was tested for some of those, but I don't know how many, so I will find that out. She is completely void of any GI symptoms. Although she is slow to gain weight and is under the 3rd % on the growth curve--could that be a GI symptom? Her height is in about the 35th %. All her tests and enzmes and everything came back normal, as are her stools normal as well. The doctors are telling us there is no other reason for her to have pseudo than CF, so we are getting very confused.

 

[briellemom]

Thank you so much for the feedback. Delaney is now doing Tobi twice a day for 28 days, then we go back in Feb. for a re-culture. I spoke with her genetic counselor and she said that Delaney had Gene Sequencing done, and they could find no mutations for CF. So it is possible that she was a rare mutation, which for now at least seems very mild. Thank you for the PID and PCD info. I think Delaney was tested for some of those, but I don't know how many, so I will find that out. She is completely void of any GI symptoms. Although she is slow to gain weight and is under the 3rd % on the growth curve--could that be a GI symptom? Her height is in about the 35th %. All her tests and enzmes and everything came back normal, as are her stools normal as well. The doctors are telling us there is no other reason for her to have pseudo than CF, so we are getting very confused.

 

[Momto3]

Does she have respiratory symptoms? Nasal/sinus or lung issues? Testing for PIDs is done through blood drawn. Testing for PCD is done through ciliary biopsy. You would definitely know if your DD had a biopsy done as it is an invasive procedure. Usually either done as a nasal biopsy by an ENT or a lung biopsy, at the same time as a bronchoscopy. Nasal potential difference testing, as I think Alyssa said, can help with the diagnosis of either CF or PCD. Healthy, normal individuals have normal values, CFers have lower values, and those with PCD have even lower values. PCD is more rare than CF and requires more invasive testing, so it's usually tested for after CF has been excluded. Approx 1 in 16,000 individuals has PCD vs 1 in 2500 or less for CF. HTH.

 

[Momto3]

Does she have respiratory symptoms? Nasal/sinus or lung issues? Testing for PIDs is done through blood drawn. Testing for PCD is done through ciliary biopsy. You would definitely know if your DD had a biopsy done as it is an invasive procedure. Usually either done as a nasal biopsy by an ENT or a lung biopsy, at the same time as a bronchoscopy. Nasal potential difference testing, as I think Alyssa said, can help with the diagnosis of either CF or PCD. Healthy, normal individuals have normal values, CFers have lower values, and those with PCD have even lower values. PCD is more rare than CF and requires more invasive testing, so it's usually tested for after CF has been excluded. Approx 1 in 16,000 individuals has PCD vs 1 in 2500 or less for CF. HTH.

 

[Momto3]

Does she have respiratory symptoms? Nasal/sinus or lung issues? Testing for PIDs is done through blood drawn. Testing for PCD is done through ciliary biopsy. You would definitely know if your DD had a biopsy done as it is an invasive procedure. Usually either done as a nasal biopsy by an ENT or a lung biopsy, at the same time as a bronchoscopy. Nasal potential difference testing, as I think Alyssa said, can help with the diagnosis of either CF or PCD. Healthy, normal individuals have normal values, CFers have lower values, and those with PCD have even lower values. PCD is more rare than CF and requires more invasive testing, so it's usually tested for after CF has been excluded. Approx 1 in 16,000 individuals has PCD vs 1 in 2500 or less for CF. HTH.

 

[briellemom]

No, She has no respiratory symptoms. Since she has started the Tobi (8 days now) she coughs quite a bit each morning. But before we found out that she had Pseudo and started treatment she didnt even have a cough. Is it normal to have a cough throughout the 28 day treatment? Delaney has not had the ciliary biopsy, so she has not been tested for PCD. We are going to be talking with the doctor in Feb about possibly putting her through the NPD test. We would have to travel quite far for it, but apparently we would not have to pay for the test itself. Has anyone had this done, or had a child have it done? They are going to keep treating Delaney as if she has CF unless we definitively know otherwise. Thanks everyone!

 

[briellemom]

No, She has no respiratory symptoms. Since she has started the Tobi (8 days now) she coughs quite a bit each morning. But before we found out that she had Pseudo and started treatment she didnt even have a cough. Is it normal to have a cough throughout the 28 day treatment? Delaney has not had the ciliary biopsy, so she has not been tested for PCD. We are going to be talking with the doctor in Feb about possibly putting her through the NPD test. We would have to travel quite far for it, but apparently we would not have to pay for the test itself. Has anyone had this done, or had a child have it done? They are going to keep treating Delaney as if she has CF unless we definitively know otherwise. Thanks everyone!

 

[briellemom]

No, She has no respiratory symptoms. Since she has started the Tobi (8 days now) she coughs quite a bit each morning. But before we found out that she had Pseudo and started treatment she didnt even have a cough. Is it normal to have a cough throughout the 28 day treatment? Delaney has not had the ciliary biopsy, so she has not been tested for PCD. We are going to be talking with the doctor in Feb about possibly putting her through the NPD test. We would have to travel quite far for it, but apparently we would not have to pay for the test itself. Has anyone had this done, or had a child have it done? They are going to keep treating Delaney as if she has CF unless we definitively know otherwise. Thanks everyone!