13 year old Boy-can some one help me?

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Childressj

New member
no, the nurse did not say what tests they were going to do, I mentioned to her some of the tests that I have heard you guys speak about(cultures, nasal swabs, ct scans) and she said "yeah, he will probably do those"....I am going to get Trevor's entire chart copied front to back and make many notes on meds, diagnosis, and symtoms since birth. I hope that this will give the Doc an accurate history of Trevor. Trevor is actually feeling pretty good right now, so I sure hope this doctor doesn't dismiss him as healthy and not do anything. Trevor is on several meds and that combination seems to be keeping him going right now, I sure hope that I find out something on Friday. The appt. time is 10:30 am...I'll send an update on Monday. Thanks for responding, it helps that I know people are thinking about this with me. Jennifer
 
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Mommafirst

Guest
I'm so glad to hear that the doctor is going to pursue this aggressively!!!
 
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Mommafirst

Guest
I'm so glad to hear that the doctor is going to pursue this aggressively!!!
 
M

Mommafirst

Guest
I'm so glad to hear that the doctor is going to pursue this aggressively!!!
 
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Childressj

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

It sounds like you still feel unsure about whether or not your son has CF so i would ask your doctor to do some lab tests that might help rule out CF. Also while this does not allow you to rule out CF it might help ease your mind, <div class="FTQUOTE"><begin quote>Text</end quote></div>between 50-75% of people with CF have a chloride/sodium ratio that is greater than 1. The lab or your docs should have this info from your son's sweat tests. A chloride/sodium ratio of greater than 1 is suggestive of CF since i think only 10% of people without CF have this. I'm not sure about carriers though... it is possible carriers could have slightly elevated ratio since they tend to have a slighty elevated sweat chloride.



I agree that throat cultures could be informative if he cultures one of the CF bugs. Your docs will know more than me. good luck!</end quote></div>
 
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Childressj

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

It sounds like you still feel unsure about whether or not your son has CF so i would ask your doctor to do some lab tests that might help rule out CF. Also while this does not allow you to rule out CF it might help ease your mind, <div class="FTQUOTE"><begin quote>Text</end quote></div>between 50-75% of people with CF have a chloride/sodium ratio that is greater than 1. The lab or your docs should have this info from your son's sweat tests. A chloride/sodium ratio of greater than 1 is suggestive of CF since i think only 10% of people without CF have this. I'm not sure about carriers though... it is possible carriers could have slightly elevated ratio since they tend to have a slighty elevated sweat chloride.



I agree that throat cultures could be informative if he cultures one of the CF bugs. Your docs will know more than me. good luck!</end quote></div>
 
C

Childressj

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

It sounds like you still feel unsure about whether or not your son has CF so i would ask your doctor to do some lab tests that might help rule out CF. Also while this does not allow you to rule out CF it might help ease your mind, <div class="FTQUOTE"><begin quote>Text</end quote></div>between 50-75% of people with CF have a chloride/sodium ratio that is greater than 1. The lab or your docs should have this info from your son's sweat tests. A chloride/sodium ratio of greater than 1 is suggestive of CF since i think only 10% of people without CF have this. I'm not sure about carriers though... it is possible carriers could have slightly elevated ratio since they tend to have a slighty elevated sweat chloride.



I agree that throat cultures could be informative if he cultures one of the CF bugs. Your docs will know more than me. good luck!</end quote></div>
 
C

Childressj

New member
OkOK-I am trying to quote what you said about chloride/sodium levels.............sorry I am not too good at navigating yet....
I have the seat tests in fron of me and here is what they say
total vol, right arm 60 ul
sweat cl, right arm 47 meq/l
total vol, left arm 55 ul
sweat cl, left arm 39 meq/l

this was the first sweat test and the second was similiar a few numbers off though. I did not see any percetages in the results though. and no ratios.....can you understand these?
 
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Childressj

New member
OkOK-I am trying to quote what you said about chloride/sodium levels.............sorry I am not too good at navigating yet....
I have the seat tests in fron of me and here is what they say
total vol, right arm 60 ul
sweat cl, right arm 47 meq/l
total vol, left arm 55 ul
sweat cl, left arm 39 meq/l

this was the first sweat test and the second was similiar a few numbers off though. I did not see any percetages in the results though. and no ratios.....can you understand these?
 
C

Childressj

New member
OkOK-I am trying to quote what you said about chloride/sodium levels.............sorry I am not too good at navigating yet....
I have the seat tests in fron of me and here is what they say
total vol, right arm 60 ul
sweat cl, right arm 47 meq/l
total vol, left arm 55 ul
sweat cl, left arm 39 meq/l

this was the first sweat test and the second was similiar a few numbers off though. I did not see any percetages in the results though. and no ratios.....can you understand these?
 
O

okok

New member
I have my daughter's sweat chloride that they faxed to our doc...it doesn't report sodium or even volume but i KNOW the lab also measured this as quality control. My doctor mentioned it once as i questioned the pos. results due to a previous negative test. Once you have the sodium concentration you simply take the ratio of chloride/sodium and if it is greater than 1 it is most likely (but not definitively) CF.

You doc may have to ask the lab for these numbers specifically. It is possible that they did not measure sodium since there are different sweat collection methods....i've heard about a coil way with some blue stuff. I'm not sure if they measure the sodium as quality control with that method or not.

Good luck!
 
O

okok

New member
I have my daughter's sweat chloride that they faxed to our doc...it doesn't report sodium or even volume but i KNOW the lab also measured this as quality control. My doctor mentioned it once as i questioned the pos. results due to a previous negative test. Once you have the sodium concentration you simply take the ratio of chloride/sodium and if it is greater than 1 it is most likely (but not definitively) CF.

You doc may have to ask the lab for these numbers specifically. It is possible that they did not measure sodium since there are different sweat collection methods....i've heard about a coil way with some blue stuff. I'm not sure if they measure the sodium as quality control with that method or not.

Good luck!
 
O

okok

New member
I have my daughter's sweat chloride that they faxed to our doc...it doesn't report sodium or even volume but i KNOW the lab also measured this as quality control. My doctor mentioned it once as i questioned the pos. results due to a previous negative test. Once you have the sodium concentration you simply take the ratio of chloride/sodium and if it is greater than 1 it is most likely (but not definitively) CF.

You doc may have to ask the lab for these numbers specifically. It is possible that they did not measure sodium since there are different sweat collection methods....i've heard about a coil way with some blue stuff. I'm not sure if they measure the sodium as quality control with that method or not.

Good luck!
 
O

okok

New member
I'm honestly not sure. I've heard parent's say they had it done my way (filter paper collection method) at UNaccreditted hospitals and then when they went to an accredited hospiotal it was preformed with the coil and blue stuff. From my understanding, the most important things are that sweating was stimulated by pilocarpine ionotophoresis (a box that over a time period of about 5 minutes electrically drives the drug pilocarpine into the skin to stimulate sweat) and that the sweat is not collected for OVER a time period of about 30 minutes (a slow sweat rate is related to false negatives).

If your sweat tests were preformed at an accredited facility i wouldn't worry too much about the method of sweat collection. It is still worth a shot to just ask your doc about the sodium concentration (he still might be able to find it out). It is not definitive but if the ratio of chloride/sodium is greater than 1 then it is suggestive of CF.

Good luck!
 
O

okok

New member
I'm honestly not sure. I've heard parent's say they had it done my way (filter paper collection method) at UNaccreditted hospitals and then when they went to an accredited hospiotal it was preformed with the coil and blue stuff. From my understanding, the most important things are that sweating was stimulated by pilocarpine ionotophoresis (a box that over a time period of about 5 minutes electrically drives the drug pilocarpine into the skin to stimulate sweat) and that the sweat is not collected for OVER a time period of about 30 minutes (a slow sweat rate is related to false negatives).

If your sweat tests were preformed at an accredited facility i wouldn't worry too much about the method of sweat collection. It is still worth a shot to just ask your doc about the sodium concentration (he still might be able to find it out). It is not definitive but if the ratio of chloride/sodium is greater than 1 then it is suggestive of CF.

Good luck!
 
O

okok

New member
I'm honestly not sure. I've heard parent's say they had it done my way (filter paper collection method) at UNaccreditted hospitals and then when they went to an accredited hospiotal it was preformed with the coil and blue stuff. From my understanding, the most important things are that sweating was stimulated by pilocarpine ionotophoresis (a box that over a time period of about 5 minutes electrically drives the drug pilocarpine into the skin to stimulate sweat) and that the sweat is not collected for OVER a time period of about 30 minutes (a slow sweat rate is related to false negatives).

If your sweat tests were preformed at an accredited facility i wouldn't worry too much about the method of sweat collection. It is still worth a shot to just ask your doc about the sodium concentration (he still might be able to find it out). It is not definitive but if the ratio of chloride/sodium is greater than 1 then it is suggestive of CF.

Good luck!
 
S

SMARSH

New member
I thought I was the only one with a teenager being diagnosed. My son Jordan was 15 when we found out, and we only found out because he was to undergo an 8 hour spine surgery to correct Sherman's Kyphosis. He had been diagnosed with Asthma when he was 5, but no-one ever suggested testing for CF. They told me Asthma usually gets better as they age, but Jordan's worsened. Since we had the former Asthma diagnosis, the surgeon wanted us to see a pulmonologist. He immediately did a sweat test, then sent us to Children's Hospital for another to confirm. We then sent DNA to Ambry, and they tell me Jordan has a new mutation that they have never seen before. It has been about 16 months since we learned of the CF. Learning this certainly answered a lot of questions about why his Asthma worsened, and why he has trouble gaining weight, etc. His older brother is 19 and is a carrier. I heard today on Paul Harvey about a new pill to cure defective genes. We can only hope and pray that it will do it's job. I know my son has inspired me more than anyone I've ever known with his acceptance of the diagnosis. He is so strong and has recovered from his spine surgery so well. He is even holding down a part-time job and has returned to his high school. (We did the first semester at home) Hang in there and don't underestimate your child. They are certainly stronger than us parents.
 
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