Help

[AnD]

The symptoms you describe sound very much like my best friend's daughter who has asthma, so I am hoping (and will pray) that that is it. Whenever she gets a cold, she has a major asthma flare up, with the gunky cough, waking up in the middle of the night with a terrible cough that requires a nebulizer treatment, and the cough lasting forever. My friend homeschools her kids though, so they don't get exposed to the number of germs that your average kid is at school or daycare, especially when she is having a bout of this (I have to admit, it is easier to have a friend with kids who understands that a playdate will be cancelled by either party due to a runny nose, with the other person thankful you cancelled at the last minute! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), so after a few weeks, her cough will finally go away. It took a while for them to finally figure out which "kind" of asthma she has (cold inflamation, vs. allergy triggers, vs. enviromental, etc.)
My cousin has a child who caught a cold or some crud every week from the church nursery, and their doctor finally told them to keep him home for a while and give his immune system a rest- getting sick again before getting totally well from the last round of crud was taking a toll on his little body, so they took turns going to church for a while.

I don't know if this helps you or not, but maybe if he is in daycare, it is a combination of the two, especially if it is asthma. I hope you find the answers soon.

 

[JazzysMom]

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

<img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

Given the fact that you are a definite carrier and you dont know about your husband, I would IMMEDIATELY request a genetic testing. Push for the full panel by Ambry since it covers the most mutations. Knowing that you are a carrier is a start, but it doesnt tell if your child is a symptomatic carrier or is a CFer. All the other testing wont give answers if its CF. It will actually confuse things IMHO since many CF issues can mimick (sp?) things or include allergies, asmtha etc. Good Luck and update us, ok?!

 

[JazzysMom]

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

<img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

Given the fact that you are a definite carrier and you dont know about your husband, I would IMMEDIATELY request a genetic testing. Push for the full panel by Ambry since it covers the most mutations. Knowing that you are a carrier is a start, but it doesnt tell if your child is a symptomatic carrier or is a CFer. All the other testing wont give answers if its CF. It will actually confuse things IMHO since many CF issues can mimick (sp?) things or include allergies, asmtha etc. Good Luck and update us, ok?!

 

[JazzysMom]

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

<img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

Given the fact that you are a definite carrier and you dont know about your husband, I would IMMEDIATELY request a genetic testing. Push for the full panel by Ambry since it covers the most mutations. Knowing that you are a carrier is a start, but it doesnt tell if your child is a symptomatic carrier or is a CFer. All the other testing wont give answers if its CF. It will actually confuse things IMHO since many CF issues can mimick (sp?) things or include allergies, asmtha etc. Good Luck and update us, ok?!

 

[Rebjane]

Hi there,

I agree with Jazzysmom, I would push for full genetic testing for your daughter for the CF gene. Has your daughter ever had a sputum culture to see if she's culturing any specific bacteria when she is sick? People with CF pick up certain bacteria in their sputum and mucus that is pretty CF specific, like pseudomonas or staph areus among many other things. if she had a culture like that it may prompt the doc to do the genetic testing as well. Hopefully it is not CF but I would be pushy and ask for her blood to be drawn for the bloodwork. To find a CF center near you go to www.cff.org. This is the Cystic Fibrosis Foundation's website. The CF docs and nurses are most helpful in answering questions.

 

[Rebjane]

Hi there,

I agree with Jazzysmom, I would push for full genetic testing for your daughter for the CF gene. Has your daughter ever had a sputum culture to see if she's culturing any specific bacteria when she is sick? People with CF pick up certain bacteria in their sputum and mucus that is pretty CF specific, like pseudomonas or staph areus among many other things. if she had a culture like that it may prompt the doc to do the genetic testing as well. Hopefully it is not CF but I would be pushy and ask for her blood to be drawn for the bloodwork. To find a CF center near you go to www.cff.org. This is the Cystic Fibrosis Foundation's website. The CF docs and nurses are most helpful in answering questions.

 

[Rebjane]

Hi there,

I agree with Jazzysmom, I would push for full genetic testing for your daughter for the CF gene. Has your daughter ever had a sputum culture to see if she's culturing any specific bacteria when she is sick? People with CF pick up certain bacteria in their sputum and mucus that is pretty CF specific, like pseudomonas or staph areus among many other things. if she had a culture like that it may prompt the doc to do the genetic testing as well. Hopefully it is not CF but I would be pushy and ask for her blood to be drawn for the bloodwork. To find a CF center near you go to www.cff.org. This is the Cystic Fibrosis Foundation's website. The CF docs and nurses are most helpful in answering questions.

 

[Rebjane]

My post was for peasmom.

 

[Rebjane]

My post was for peasmom.

 

[Rebjane]

My post was for peasmom.

 

[peasmom]

Thank you to all that gave me some answers--It's been a long day. Yes she has had cultures done of her nose and it showed staph, strep and some colonizing. I went to the Hosp today and picked up her lab results from the allergy testing and she is neg on all allergans that were done. I was kind of hoping she had the allergies--it would be easier. As for the asthma I don't see a pattern there and not one DR has mentioned it. This may scare you all a little but I am a LPN and am aware of the asthma symptoms and she just doesn't seem to fit in there. When it comes to my kids I try really hard to be Mom not the Nurse but I 'm starting to think I need to be both. After a very long day and a lot of thinking the only thing I can do at this time is be her mom and love her. No matter what, I will do what ever it takes to give her a normal as possible life. At this point untill we get some answers I can only put it in Gods hands and pray. As my quote says My Kids ==My Life- they are all I have . No I should say I have you guys for the support now. Even if it ends up she doesn't have CF it's nice to know that there are people out there in the world that actually care about others.
Thanks again for all your input and I will keep you posted on what happens.


Thank you all again Peasmom

 

[peasmom]

Thank you to all that gave me some answers--It's been a long day. Yes she has had cultures done of her nose and it showed staph, strep and some colonizing. I went to the Hosp today and picked up her lab results from the allergy testing and she is neg on all allergans that were done. I was kind of hoping she had the allergies--it would be easier. As for the asthma I don't see a pattern there and not one DR has mentioned it. This may scare you all a little but I am a LPN and am aware of the asthma symptoms and she just doesn't seem to fit in there. When it comes to my kids I try really hard to be Mom not the Nurse but I 'm starting to think I need to be both. After a very long day and a lot of thinking the only thing I can do at this time is be her mom and love her. No matter what, I will do what ever it takes to give her a normal as possible life. At this point untill we get some answers I can only put it in Gods hands and pray. As my quote says My Kids ==My Life- they are all I have . No I should say I have you guys for the support now. Even if it ends up she doesn't have CF it's nice to know that there are people out there in the world that actually care about others.
Thanks again for all your input and I will keep you posted on what happens.


Thank you all again Peasmom

 

[peasmom]

Thank you to all that gave me some answers--It's been a long day. Yes she has had cultures done of her nose and it showed staph, strep and some colonizing. I went to the Hosp today and picked up her lab results from the allergy testing and she is neg on all allergans that were done. I was kind of hoping she had the allergies--it would be easier. As for the asthma I don't see a pattern there and not one DR has mentioned it. This may scare you all a little but I am a LPN and am aware of the asthma symptoms and she just doesn't seem to fit in there. When it comes to my kids I try really hard to be Mom not the Nurse but I 'm starting to think I need to be both. After a very long day and a lot of thinking the only thing I can do at this time is be her mom and love her. No matter what, I will do what ever it takes to give her a normal as possible life. At this point untill we get some answers I can only put it in Gods hands and pray. As my quote says My Kids ==My Life- they are all I have . No I should say I have you guys for the support now. Even if it ends up she doesn't have CF it's nice to know that there are people out there in the world that actually care about others.
Thanks again for all your input and I will keep you posted on what happens.


Thank you all again Peasmom

 

[peasmom]

To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it

 

[peasmom]

To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it

 

[peasmom]

To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it

 

[Alyssa]

<b>peasmom,</b>

I posted the first part of this message to you on the other post :


<i>The sweat test *can* be very accurate -- when you fall pretty high and there isn't much of a question as to the results -- many people test out in say the 100+ number -- usually the docs will take that (along with CF symptoms) as a pretty clear diagnosis and will follow up with genetic testing to see what genes the person has, but they can pretty safely say "yes, you have CF"

The problem with sweat tests not being accurate is when they fall low -- say in the 30-60 range.... then docs can sometimes tell people they have "negative" or "normal" test results, when in fact the person does have two genes and should be tested to find them (many of the mild genes cause a lower sweat test number - but a lot of "regular" docs don't really know that)

If you have time, read the first entry on my blog page for more detailed info. (link in my signature line)</i>

***************** new stuff below***********

<u>Now that I read more about your daughter's situation on this post</u>, <b>I would strongly encourage you to be the biggest pain in the butt patient you can for your daughter -- since you know you are a carrier and she has had some VERY CLASSIC CF symptoms, I'd say it is imperative that you get her tested </b>-- you may get a clear cut answer right away with a sweat test, but if you don't (and even if you do) you still will need genetic testing to find out what her gene mutations are.

If you run into resistance from your doctor, let them start with just the sweat test, but after that do not back down until you get full genetic testing -- Any doctor who is familiar with CF wouldn't take 30 seconds to decide to test her. If you are not successful with the doctor you are seeing now -- go find another doctor who is familiar with CF -- find the CFF center closest to you at CFF.org

Best of luck and keep us posted !

 

[Alyssa]

<b>peasmom,</b>

I posted the first part of this message to you on the other post :


<i>The sweat test *can* be very accurate -- when you fall pretty high and there isn't much of a question as to the results -- many people test out in say the 100+ number -- usually the docs will take that (along with CF symptoms) as a pretty clear diagnosis and will follow up with genetic testing to see what genes the person has, but they can pretty safely say "yes, you have CF"

The problem with sweat tests not being accurate is when they fall low -- say in the 30-60 range.... then docs can sometimes tell people they have "negative" or "normal" test results, when in fact the person does have two genes and should be tested to find them (many of the mild genes cause a lower sweat test number - but a lot of "regular" docs don't really know that)

If you have time, read the first entry on my blog page for more detailed info. (link in my signature line)</i>

***************** new stuff below***********

<u>Now that I read more about your daughter's situation on this post</u>, <b>I would strongly encourage you to be the biggest pain in the butt patient you can for your daughter -- since you know you are a carrier and she has had some VERY CLASSIC CF symptoms, I'd say it is imperative that you get her tested </b>-- you may get a clear cut answer right away with a sweat test, but if you don't (and even if you do) you still will need genetic testing to find out what her gene mutations are.

If you run into resistance from your doctor, let them start with just the sweat test, but after that do not back down until you get full genetic testing -- Any doctor who is familiar with CF wouldn't take 30 seconds to decide to test her. If you are not successful with the doctor you are seeing now -- go find another doctor who is familiar with CF -- find the CFF center closest to you at CFF.org

Best of luck and keep us posted !

 

[Alyssa]

<b>peasmom,</b>

I posted the first part of this message to you on the other post :


<i>The sweat test *can* be very accurate -- when you fall pretty high and there isn't much of a question as to the results -- many people test out in say the 100+ number -- usually the docs will take that (along with CF symptoms) as a pretty clear diagnosis and will follow up with genetic testing to see what genes the person has, but they can pretty safely say "yes, you have CF"

The problem with sweat tests not being accurate is when they fall low -- say in the 30-60 range.... then docs can sometimes tell people they have "negative" or "normal" test results, when in fact the person does have two genes and should be tested to find them (many of the mild genes cause a lower sweat test number - but a lot of "regular" docs don't really know that)

If you have time, read the first entry on my blog page for more detailed info. (link in my signature line)</i>

***************** new stuff below***********

<u>Now that I read more about your daughter's situation on this post</u>, <b>I would strongly encourage you to be the biggest pain in the butt patient you can for your daughter -- since you know you are a carrier and she has had some VERY CLASSIC CF symptoms, I'd say it is imperative that you get her tested </b>-- you may get a clear cut answer right away with a sweat test, but if you don't (and even if you do) you still will need genetic testing to find out what her gene mutations are.

If you run into resistance from your doctor, let them start with just the sweat test, but after that do not back down until you get full genetic testing -- Any doctor who is familiar with CF wouldn't take 30 seconds to decide to test her. If you are not successful with the doctor you are seeing now -- go find another doctor who is familiar with CF -- find the CFF center closest to you at CFF.org

Best of luck and keep us posted !

 

[JazzysMom]

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

To Jazzysmom--Is this Ambry panel something my pediatrician can order prior to going to the specialist and is it just a matter of Blood work? Would it benifit to have all the test we can prior to going? or will this MD want to order her own. Being a Nurse myself I try not to be that "irritating-pain-in-the-butt-patient" but at this point Im thinking I don't care who I irritate. What I'm asking is do these Dr's tend to stay with there own test facilities or is a lab a lab no matter where it's done? How do you feel about the sweat test and it's accuracy, I see some messages that say their child was neg. with the sweat test but it ended up the child was actually positive for CF. Any opinion on it</end quote></div>

It is a blood test that any doctor can order. Since an extended panel from Ambry takes a while......if this is what is ordered the sooner the better. It is very important that it not just be sent to any lab since Ambry has the most extended testing for CF mutations. It will assure more accuracy. The sweat test is helpful, but is no longer the golden rule. It use to be the only available diagnostic testing available. Since the CF gene was found and genetic testing has started....it has become more apparent how unreliable the sweat test can be. Its not bad to have it, but to use it as the only testing isnt recommended especially when results come back negative or borderline.