**Update**New to board with lots of questions.....

F

folione

New member
New to board with lots of questions.....

Bronchoscopies can make the lungs do wierd things from the irritation of the procedure. My son's last bronch cleaned him out good but caused reactive-type inflammation which led him to junk-up again a few days later..then when that all cleared up his little lung passages were kindof floppy from all the stress on them, which made him sound crackly even though the mucus was pretty much gone by then. My son is 4 so I'd bet the effects on a tinytot could be even more pronounced.

I hope your doctors get to the bottom of this so you and your boy can move ahead with the treatments he needs, whatever they end up being. Waiting for doctors to get to conclusions really sucks.
 
F

folione

New member
New to board with lots of questions.....

Bronchoscopies can make the lungs do wierd things from the irritation of the procedure. My son's last bronch cleaned him out good but caused reactive-type inflammation which led him to junk-up again a few days later..then when that all cleared up his little lung passages were kindof floppy from all the stress on them, which made him sound crackly even though the mucus was pretty much gone by then. My son is 4 so I'd bet the effects on a tinytot could be even more pronounced.

I hope your doctors get to the bottom of this so you and your boy can move ahead with the treatments he needs, whatever they end up being. Waiting for doctors to get to conclusions really sucks.
 
F

folione

New member
New to board with lots of questions.....

Bronchoscopies can make the lungs do wierd things from the irritation of the procedure. My son's last bronch cleaned him out good but caused reactive-type inflammation which led him to junk-up again a few days later..then when that all cleared up his little lung passages were kindof floppy from all the stress on them, which made him sound crackly even though the mucus was pretty much gone by then. My son is 4 so I'd bet the effects on a tinytot could be even more pronounced.

I hope your doctors get to the bottom of this so you and your boy can move ahead with the treatments he needs, whatever they end up being. Waiting for doctors to get to conclusions really sucks.
 
F

folione

New member
New to board with lots of questions.....

Bronchoscopies can make the lungs do wierd things from the irritation of the procedure. My son's last bronch cleaned him out good but caused reactive-type inflammation which led him to junk-up again a few days later..then when that all cleared up his little lung passages were kindof floppy from all the stress on them, which made him sound crackly even though the mucus was pretty much gone by then. My son is 4 so I'd bet the effects on a tinytot could be even more pronounced.

I hope your doctors get to the bottom of this so you and your boy can move ahead with the treatments he needs, whatever they end up being. Waiting for doctors to get to conclusions really sucks.
 
F

folione

New member
New to board with lots of questions.....

Bronchoscopies can make the lungs do wierd things from the irritation of the procedure. My son's last bronch cleaned him out good but caused reactive-type inflammation which led him to junk-up again a few days later..then when that all cleared up his little lung passages were kindof floppy from all the stress on them, which made him sound crackly even though the mucus was pretty much gone by then. My son is 4 so I'd bet the effects on a tinytot could be even more pronounced.

I hope your doctors get to the bottom of this so you and your boy can move ahead with the treatments he needs, whatever they end up being. Waiting for doctors to get to conclusions really sucks.
 
C

concernedmom

New member
New to board with lots of questions.....

I agree with everyone else, regardless of the sweat test results, I'd push for the full genetic sequencing through Ambry or Quest. (See Ambry's link at the top of this section).

To my (limited knowledge) there are a few other groups of people who are susceptible to pseudo. (1) anyone immune compromised, including those listed above but also including those with primary immune deficiencies. There's a wide range of PIDs - some that present nearly at birth, some a little older. You can google it for more info, (2) people with other genetic lung diseases. Primary ciliary dyskinesia presents similarly in the lungs/sinuses as CF. You can google it. There are other, more rare lung diseases that can predispose someone. By no means is CF the only disease that predisposes one to pseduomonas, just probably the most common.

How old is your DS?
 
C

concernedmom

New member
New to board with lots of questions.....

I agree with everyone else, regardless of the sweat test results, I'd push for the full genetic sequencing through Ambry or Quest. (See Ambry's link at the top of this section).

To my (limited knowledge) there are a few other groups of people who are susceptible to pseudo. (1) anyone immune compromised, including those listed above but also including those with primary immune deficiencies. There's a wide range of PIDs - some that present nearly at birth, some a little older. You can google it for more info, (2) people with other genetic lung diseases. Primary ciliary dyskinesia presents similarly in the lungs/sinuses as CF. You can google it. There are other, more rare lung diseases that can predispose someone. By no means is CF the only disease that predisposes one to pseduomonas, just probably the most common.

How old is your DS?
 
C

concernedmom

New member
New to board with lots of questions.....

I agree with everyone else, regardless of the sweat test results, I'd push for the full genetic sequencing through Ambry or Quest. (See Ambry's link at the top of this section).

To my (limited knowledge) there are a few other groups of people who are susceptible to pseudo. (1) anyone immune compromised, including those listed above but also including those with primary immune deficiencies. There's a wide range of PIDs - some that present nearly at birth, some a little older. You can google it for more info, (2) people with other genetic lung diseases. Primary ciliary dyskinesia presents similarly in the lungs/sinuses as CF. You can google it. There are other, more rare lung diseases that can predispose someone. By no means is CF the only disease that predisposes one to pseduomonas, just probably the most common.

How old is your DS?
 
C

concernedmom

New member
New to board with lots of questions.....

I agree with everyone else, regardless of the sweat test results, I'd push for the full genetic sequencing through Ambry or Quest. (See Ambry's link at the top of this section).

To my (limited knowledge) there are a few other groups of people who are susceptible to pseudo. (1) anyone immune compromised, including those listed above but also including those with primary immune deficiencies. There's a wide range of PIDs - some that present nearly at birth, some a little older. You can google it for more info, (2) people with other genetic lung diseases. Primary ciliary dyskinesia presents similarly in the lungs/sinuses as CF. You can google it. There are other, more rare lung diseases that can predispose someone. By no means is CF the only disease that predisposes one to pseduomonas, just probably the most common.

How old is your DS?
 
C

concernedmom

New member
New to board with lots of questions.....

I agree with everyone else, regardless of the sweat test results, I'd push for the full genetic sequencing through Ambry or Quest. (See Ambry's link at the top of this section).

To my (limited knowledge) there are a few other groups of people who are susceptible to pseudo. (1) anyone immune compromised, including those listed above but also including those with primary immune deficiencies. There's a wide range of PIDs - some that present nearly at birth, some a little older. You can google it for more info, (2) people with other genetic lung diseases. Primary ciliary dyskinesia presents similarly in the lungs/sinuses as CF. You can google it. There are other, more rare lung diseases that can predispose someone. By no means is CF the only disease that predisposes one to pseduomonas, just probably the most common.

How old is your DS?
 
M

Mariosmom

New member
New to board with lots of questions.....

Thank you so much for your responses. They really mean so much!

My son is 9 months old. He started having symptoms right when he was 6 months and was completely healthy (other than the reflux) until this time.

My mom is a microbiologist and I talked to her about the pseudo. She said (as you all did) that it should've grown within 2 days. We were in the hospital for 3 days following the bronch and the results at that time were negative. We watched the doctors look up the results on the computer every morning. The cultures showed the staph at 5 days past the bronch, but there was still no pseudo at that time. My mom thinks that the pseudo grew in one of the fungal cultures as they take 4 weeks to process. She said that they cultures are looked at once a week during this time, so they still should've found the pseudo sooner. It's frustrating and scary!

I will put a call into our dr to see if they will order the full panel test. I would think they should considering the symptoms and now the pseudo.

Thank you all so much again. I'll keep you posted.
 
M

Mariosmom

New member
New to board with lots of questions.....

Thank you so much for your responses. They really mean so much!

My son is 9 months old. He started having symptoms right when he was 6 months and was completely healthy (other than the reflux) until this time.

My mom is a microbiologist and I talked to her about the pseudo. She said (as you all did) that it should've grown within 2 days. We were in the hospital for 3 days following the bronch and the results at that time were negative. We watched the doctors look up the results on the computer every morning. The cultures showed the staph at 5 days past the bronch, but there was still no pseudo at that time. My mom thinks that the pseudo grew in one of the fungal cultures as they take 4 weeks to process. She said that they cultures are looked at once a week during this time, so they still should've found the pseudo sooner. It's frustrating and scary!

I will put a call into our dr to see if they will order the full panel test. I would think they should considering the symptoms and now the pseudo.

Thank you all so much again. I'll keep you posted.
 
M

Mariosmom

New member
New to board with lots of questions.....

Thank you so much for your responses. They really mean so much!

My son is 9 months old. He started having symptoms right when he was 6 months and was completely healthy (other than the reflux) until this time.

My mom is a microbiologist and I talked to her about the pseudo. She said (as you all did) that it should've grown within 2 days. We were in the hospital for 3 days following the bronch and the results at that time were negative. We watched the doctors look up the results on the computer every morning. The cultures showed the staph at 5 days past the bronch, but there was still no pseudo at that time. My mom thinks that the pseudo grew in one of the fungal cultures as they take 4 weeks to process. She said that they cultures are looked at once a week during this time, so they still should've found the pseudo sooner. It's frustrating and scary!

I will put a call into our dr to see if they will order the full panel test. I would think they should considering the symptoms and now the pseudo.

Thank you all so much again. I'll keep you posted.
 
M

Mariosmom

New member
New to board with lots of questions.....

Thank you so much for your responses. They really mean so much!

My son is 9 months old. He started having symptoms right when he was 6 months and was completely healthy (other than the reflux) until this time.

My mom is a microbiologist and I talked to her about the pseudo. She said (as you all did) that it should've grown within 2 days. We were in the hospital for 3 days following the bronch and the results at that time were negative. We watched the doctors look up the results on the computer every morning. The cultures showed the staph at 5 days past the bronch, but there was still no pseudo at that time. My mom thinks that the pseudo grew in one of the fungal cultures as they take 4 weeks to process. She said that they cultures are looked at once a week during this time, so they still should've found the pseudo sooner. It's frustrating and scary!

I will put a call into our dr to see if they will order the full panel test. I would think they should considering the symptoms and now the pseudo.

Thank you all so much again. I'll keep you posted.
 
M

Mariosmom

New member
New to board with lots of questions.....

Thank you so much for your responses. They really mean so much!

My son is 9 months old. He started having symptoms right when he was 6 months and was completely healthy (other than the reflux) until this time.

My mom is a microbiologist and I talked to her about the pseudo. She said (as you all did) that it should've grown within 2 days. We were in the hospital for 3 days following the bronch and the results at that time were negative. We watched the doctors look up the results on the computer every morning. The cultures showed the staph at 5 days past the bronch, but there was still no pseudo at that time. My mom thinks that the pseudo grew in one of the fungal cultures as they take 4 weeks to process. She said that they cultures are looked at once a week during this time, so they still should've found the pseudo sooner. It's frustrating and scary!

I will put a call into our dr to see if they will order the full panel test. I would think they should considering the symptoms and now the pseudo.

Thank you all so much again. I'll keep you posted.
 
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