Diagnosing CF - Pseudomonas

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anonymous

New member
Many thanks in advance for reading my post. I am writing about my 4 year old son. I will give you the briefest history possible! He was born (full term) weighing 8.7 lbs. He had a difficult time regaining birth weight. Numerous ear and sinus infections as an infant/toddler. He had PE tubes inserted twice. He developed GERD at age two (literally out of the blue...he never had symptoms of it before). At the same time he was diagnosed with GERD he was given a sweat test (due to failure to thrive/abnormal stools). He was also tested for Celiac disease due to an elevated antigliandin IgG level. Both tests came back negative and he has been taking prevacid 2x's a day since then to control the GERD. He had his tonsils and adenoids removed when he was three, due to chronic strep infections. He has asthma and allergies. He has been hospitalized for breathing difficulty. For the last 6 or so months he has been fighting another sinus infection. He has been on 3 different antibiotics in the last 3 months. Our ENT did a CT scan and cultured the bacteria last week. The CT scan showed the ever-present infection and the culture showed pseduomonas along with another bacteria. The ENT has ordered another sweat test even though the first one was negative. The are also checking his immune system. It seems to me that (in children) pseudomonas infections are rarely present in healthy children.

I was wondering what your thoughts on this subject were...again, many thanks for your help.

E.
 
A

anonymous

New member
Many thanks in advance for reading my post. I am writing about my 4 year old son. I will give you the briefest history possible! He was born (full term) weighing 8.7 lbs. He had a difficult time regaining birth weight. Numerous ear and sinus infections as an infant/toddler. He had PE tubes inserted twice. He developed GERD at age two (literally out of the blue...he never had symptoms of it before). At the same time he was diagnosed with GERD he was given a sweat test (due to failure to thrive/abnormal stools). He was also tested for Celiac disease due to an elevated antigliandin IgG level. Both tests came back negative and he has been taking prevacid 2x's a day since then to control the GERD. He had his tonsils and adenoids removed when he was three, due to chronic strep infections. He has asthma and allergies. He has been hospitalized for breathing difficulty. For the last 6 or so months he has been fighting another sinus infection. He has been on 3 different antibiotics in the last 3 months. Our ENT did a CT scan and cultured the bacteria last week. The CT scan showed the ever-present infection and the culture showed pseduomonas along with another bacteria. The ENT has ordered another sweat test even though the first one was negative. The are also checking his immune system. It seems to me that (in children) pseudomonas infections are rarely present in healthy children.

I was wondering what your thoughts on this subject were...again, many thanks for your help.

E.
 
F

Foxycoxy

New member
Im 19 and have a sister also with Cf who is 16. Both me and her have cultured pseudemonas ever since i can remember, and we have always been very healthy. I no children who are alot worse than me and dont culture pseudemonas at all.
 
F

Foxycoxy

New member
Im 19 and have a sister also with Cf who is 16. Both me and her have cultured pseudemonas ever since i can remember, and we have always been very healthy. I no children who are alot worse than me and dont culture pseudemonas at all.
 
A

anonymous

New member
While it is true that pseudomonas infections are usually seen in cf patients, there are other conditions that predispose people to them, cf is just the most common. Primary immune deficiencies (PIDs) are one such condition. Another is primary ciliary dyskinesia (PCD). Due a google search and you'll find lots of info on it. Personally, I'd want a repeat sweat test, an extensive genetic test for cf, and the blood test for PIDs. If those all come back negative, ask the pulmonologist or ENT about a biopsy for PCD. PCD is much more difficult to diagnose than PIDs or CF and requires invasive testing for diagnosis so I'd request that last, only if the others come back negative. Honestly, if it weren't for the pseudo infection, if his sweat test was performed at an accredited cf clinic and was a low neg (under 20), I'd probably assume it were just all from the asthma/allergies. My ds has a very similiar history except that he also had sinus surgery at age 4 but within literally weeks his sinuses were clogged again. He has reflux, chronic sinusitis, confirmed allergies, asthma, and has a past history of ear infections (approx 20) and pneumonias. We've ruled everything out except PCD. When/if we decide to do another sinus surgery, he'll be tested for that (at the advice of two different ENTs and our allergist.) The pseudo infection is of course more troubling. Has anyone ever mentioned nasal polyps?

Good luck!
 
A

anonymous

New member
While it is true that pseudomonas infections are usually seen in cf patients, there are other conditions that predispose people to them, cf is just the most common. Primary immune deficiencies (PIDs) are one such condition. Another is primary ciliary dyskinesia (PCD). Due a google search and you'll find lots of info on it. Personally, I'd want a repeat sweat test, an extensive genetic test for cf, and the blood test for PIDs. If those all come back negative, ask the pulmonologist or ENT about a biopsy for PCD. PCD is much more difficult to diagnose than PIDs or CF and requires invasive testing for diagnosis so I'd request that last, only if the others come back negative. Honestly, if it weren't for the pseudo infection, if his sweat test was performed at an accredited cf clinic and was a low neg (under 20), I'd probably assume it were just all from the asthma/allergies. My ds has a very similiar history except that he also had sinus surgery at age 4 but within literally weeks his sinuses were clogged again. He has reflux, chronic sinusitis, confirmed allergies, asthma, and has a past history of ear infections (approx 20) and pneumonias. We've ruled everything out except PCD. When/if we decide to do another sinus surgery, he'll be tested for that (at the advice of two different ENTs and our allergist.) The pseudo infection is of course more troubling. Has anyone ever mentioned nasal polyps?

Good luck!
 
A

anonymous

New member
Oh, forgot to mention that my ds is also very small despite being large at birth (over 9 lbs.) Now, at almost 8, he's barely 45 lbs fully dressed and is short 47".
 
A

anonymous

New member
Oh, forgot to mention that my ds is also very small despite being large at birth (over 9 lbs.) Now, at almost 8, he's barely 45 lbs fully dressed and is short 47".
 
J

JazzysMom

New member
I know that many kids with Cerebral Palsy culture pseudomonas so its is not just a CF thing, but obviously there are some type of health factor involved. A completely healthy person wouldnt culture it. Has a genetic blood test been done? Even tho the sweat test is the cheapest, least invasive & use to be considered the "ultimate" way to determine CF there have been many times a sweat test came back negative for different reasons, but bloodwork showed the CF mutations. You cant have an incorrect Positive result on a sweat test, but you can have an incorrect/inconclusive negative result!
 
J

JazzysMom

New member
I know that many kids with Cerebral Palsy culture pseudomonas so its is not just a CF thing, but obviously there are some type of health factor involved. A completely healthy person wouldnt culture it. Has a genetic blood test been done? Even tho the sweat test is the cheapest, least invasive & use to be considered the "ultimate" way to determine CF there have been many times a sweat test came back negative for different reasons, but bloodwork showed the CF mutations. You cant have an incorrect Positive result on a sweat test, but you can have an incorrect/inconclusive negative result!
 
A

anonymous

New member
You should request genetic testing. Most test for 25 of the most common mutations. There are over 1200 mutations identified. If you do the standard test and only 1 or no mutations show up, request more extensive testing. You need two mutations to have CF. Mom and Dad could be tested too.

Good Luck, Lisa mom to 9 yr no/cf, 5 yr w/cf, 3 week no/cf.
 
A

anonymous

New member
You should request genetic testing. Most test for 25 of the most common mutations. There are over 1200 mutations identified. If you do the standard test and only 1 or no mutations show up, request more extensive testing. You need two mutations to have CF. Mom and Dad could be tested too.

Good Luck, Lisa mom to 9 yr no/cf, 5 yr w/cf, 3 week no/cf.
 
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