New diagnosis 9 year old

S

shockedmom

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">
My daughter who is 9 has had terrible mucus congestion problems the last 2 years, accompanied with sinus pollups and constant infection and headaches. She has the symptoms of cough, mucus, breathing difficulties, resistance to antibiotics and over the counter (Mucinex) products. On a fluke my pediatrician tested her and my son(who is asthmatic:same symptoms) and her numbers were high - 84 and 76, he also tested positive; but low. We are waiting to see the specialist(insurance of course), should I be worried?. What happens next. Everyone is shocked because she has been fairly healthy compared to most and is a thick girl for her age which does not match the majority of others with CF. My son is a toothpick. I would have guessed him with worse than her. What type of tests come next and what should I be prepared for? Thanks
 
S

shockedmom

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">
My daughter who is 9 has had terrible mucus congestion problems the last 2 years, accompanied with sinus pollups and constant infection and headaches. She has the symptoms of cough, mucus, breathing difficulties, resistance to antibiotics and over the counter (Mucinex) products. On a fluke my pediatrician tested her and my son(who is asthmatic:same symptoms) and her numbers were high - 84 and 76, he also tested positive; but low. We are waiting to see the specialist(insurance of course), should I be worried?. What happens next. Everyone is shocked because she has been fairly healthy compared to most and is a thick girl for her age which does not match the majority of others with CF. My son is a toothpick. I would have guessed him with worse than her. What type of tests come next and what should I be prepared for? Thanks
 
S

shockedmom

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">
My daughter who is 9 has had terrible mucus congestion problems the last 2 years, accompanied with sinus pollups and constant infection and headaches. She has the symptoms of cough, mucus, breathing difficulties, resistance to antibiotics and over the counter (Mucinex) products. On a fluke my pediatrician tested her and my son(who is asthmatic:same symptoms) and her numbers were high - 84 and 76, he also tested positive; but low. We are waiting to see the specialist(insurance of course), should I be worried?. What happens next. Everyone is shocked because she has been fairly healthy compared to most and is a thick girl for her age which does not match the majority of others with CF. My son is a toothpick. I would have guessed him with worse than her. What type of tests come next and what should I be prepared for? Thanks
 
S

shockedmom

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">
My daughter who is 9 has had terrible mucus congestion problems the last 2 years, accompanied with sinus pollups and constant infection and headaches. She has the symptoms of cough, mucus, breathing difficulties, resistance to antibiotics and over the counter (Mucinex) products. On a fluke my pediatrician tested her and my son(who is asthmatic:same symptoms) and her numbers were high - 84 and 76, he also tested positive; but low. We are waiting to see the specialist(insurance of course), should I be worried?. What happens next. Everyone is shocked because she has been fairly healthy compared to most and is a thick girl for her age which does not match the majority of others with CF. My son is a toothpick. I would have guessed him with worse than her. What type of tests come next and what should I be prepared for? Thanks
 
S

shockedmom

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">
<br />My daughter who is 9 has had terrible mucus congestion problems the last 2 years, accompanied with sinus pollups and constant infection and headaches. She has the symptoms of cough, mucus, breathing difficulties, resistance to antibiotics and over the counter (Mucinex) products. On a fluke my pediatrician tested her and my son(who is asthmatic:same symptoms) and her numbers were high - 84 and 76, he also tested positive; but low. We are waiting to see the specialist(insurance of course), should I be worried?. What happens next. Everyone is shocked because she has been fairly healthy compared to most and is a thick girl for her age which does not match the majority of others with CF. My son is a toothpick. I would have guessed him with worse than her. What type of tests come next and what should I be prepared for? Thanks
 
B

bkc3

New member
we are fairly new to this as well. Our son was diagnosed a few months ago he is 3. The next steps will probably be Genetic testing to confirm the diagnosis and to see which gene types are present. When you do see the specialist, which will probably be a pulmonary specialist at an accredited cf treatment center, you will probably have a throat/ sputum culture done to check for bacterias. Pseudomonas is one that they check for and try to treat fairly aggressively. They will likely take stool samples to check for pancreatic insufficiency and will make dietary recommendations based on their findings. This is a difficult time for your family. You will learn and hear things daily that will be difficult and overwhelming at first. There is a great deal of hope out there and the important thing is to focus on the children and take the treatments and recommendations very seriously. Chest physical therapy will probably start very quickly to help with airway clearance. There are a few nebulizer treatments that will probably become routine as well. Be very cautious with being around people who are sick especially now.(by cautious I mean stay away from them) Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy. There will be lots of new information coming your way. We hope things go well with the specialist. Push to see them as soon as possible. They will be able to answer all of your questions.
Protect their environment...If anyone smokes at home, you should inform them that they have just quit..
 
B

bkc3

New member
we are fairly new to this as well. Our son was diagnosed a few months ago he is 3. The next steps will probably be Genetic testing to confirm the diagnosis and to see which gene types are present. When you do see the specialist, which will probably be a pulmonary specialist at an accredited cf treatment center, you will probably have a throat/ sputum culture done to check for bacterias. Pseudomonas is one that they check for and try to treat fairly aggressively. They will likely take stool samples to check for pancreatic insufficiency and will make dietary recommendations based on their findings. This is a difficult time for your family. You will learn and hear things daily that will be difficult and overwhelming at first. There is a great deal of hope out there and the important thing is to focus on the children and take the treatments and recommendations very seriously. Chest physical therapy will probably start very quickly to help with airway clearance. There are a few nebulizer treatments that will probably become routine as well. Be very cautious with being around people who are sick especially now.(by cautious I mean stay away from them) Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy. There will be lots of new information coming your way. We hope things go well with the specialist. Push to see them as soon as possible. They will be able to answer all of your questions.
Protect their environment...If anyone smokes at home, you should inform them that they have just quit..
 
B

bkc3

New member
we are fairly new to this as well. Our son was diagnosed a few months ago he is 3. The next steps will probably be Genetic testing to confirm the diagnosis and to see which gene types are present. When you do see the specialist, which will probably be a pulmonary specialist at an accredited cf treatment center, you will probably have a throat/ sputum culture done to check for bacterias. Pseudomonas is one that they check for and try to treat fairly aggressively. They will likely take stool samples to check for pancreatic insufficiency and will make dietary recommendations based on their findings. This is a difficult time for your family. You will learn and hear things daily that will be difficult and overwhelming at first. There is a great deal of hope out there and the important thing is to focus on the children and take the treatments and recommendations very seriously. Chest physical therapy will probably start very quickly to help with airway clearance. There are a few nebulizer treatments that will probably become routine as well. Be very cautious with being around people who are sick especially now.(by cautious I mean stay away from them) Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy. There will be lots of new information coming your way. We hope things go well with the specialist. Push to see them as soon as possible. They will be able to answer all of your questions.
Protect their environment...If anyone smokes at home, you should inform them that they have just quit..
 
B

bkc3

New member
we are fairly new to this as well. Our son was diagnosed a few months ago he is 3. The next steps will probably be Genetic testing to confirm the diagnosis and to see which gene types are present. When you do see the specialist, which will probably be a pulmonary specialist at an accredited cf treatment center, you will probably have a throat/ sputum culture done to check for bacterias. Pseudomonas is one that they check for and try to treat fairly aggressively. They will likely take stool samples to check for pancreatic insufficiency and will make dietary recommendations based on their findings. This is a difficult time for your family. You will learn and hear things daily that will be difficult and overwhelming at first. There is a great deal of hope out there and the important thing is to focus on the children and take the treatments and recommendations very seriously. Chest physical therapy will probably start very quickly to help with airway clearance. There are a few nebulizer treatments that will probably become routine as well. Be very cautious with being around people who are sick especially now.(by cautious I mean stay away from them) Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy. There will be lots of new information coming your way. We hope things go well with the specialist. Push to see them as soon as possible. They will be able to answer all of your questions.
Protect their environment...If anyone smokes at home, you should inform them that they have just quit..
 
B

bkc3

New member
we are fairly new to this as well. Our son was diagnosed a few months ago he is 3. The next steps will probably be Genetic testing to confirm the diagnosis and to see which gene types are present. When you do see the specialist, which will probably be a pulmonary specialist at an accredited cf treatment center, you will probably have a throat/ sputum culture done to check for bacterias. Pseudomonas is one that they check for and try to treat fairly aggressively. They will likely take stool samples to check for pancreatic insufficiency and will make dietary recommendations based on their findings. This is a difficult time for your family. You will learn and hear things daily that will be difficult and overwhelming at first. There is a great deal of hope out there and the important thing is to focus on the children and take the treatments and recommendations very seriously. Chest physical therapy will probably start very quickly to help with airway clearance. There are a few nebulizer treatments that will probably become routine as well. Be very cautious with being around people who are sick especially now.(by cautious I mean stay away from them) Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy. There will be lots of new information coming your way. We hope things go well with the specialist. Push to see them as soon as possible. They will be able to answer all of your questions.
<br />Protect their environment...If anyone smokes at home, you should inform them that they have just quit..
 
H

hmw

New member
My heart goes out to you... we were in your place just about a year ago with our daughter, who was 7 at the time. We were pursuing answers for her- knowing something was very wrong with her- but CF as the diagnosis came out of left field. I was stunned and unprepared for the onslaught of questions and fears I'd go through and new care regimen that would become part of our life. So I can completely relate to what it is like to go through this with an older child, trying to sort out years of complicated history, figuring out sibling issues...

Getting your children seen at an accredited CF Center (which is generally a clinic at/affiliated with a hospital, not a small private office like her pediatrician might be) is very important when it comes to getting their care off to the right start and continuing to give them the best odds of future good health. They will get care from many different professionals at their visits~ a respiratory therapist, a pulmonary doctor, nurse, nutritionist, social worker, etc. Your first visit will likely take several hours, so be prepared for this going in!

Other things I can think of to add that may be done at this appt:

Respiratory therapist: PFT's will be done (your kids will likely have had these done before, with a hx of asthma. These are done at most, if not all, appts.) You'll discuss what kind of chest PT will be done. For example, Acapella (a handheld device you breathe into) or the Vest (this mimics the percussion of manual chest PT and is very widely used with kids.) Hopefully, you'll also be taught how to do manual chest PT as well.

Nurse: Sputum culture; or if she can't spit anything up, a throat culture. Kids with CF culture various bugs, including staph, pseudomonas, and many others. Based on what they find they can decide if any antibiotics are needed as well as determine what antibiotics the bugs are sensitive to before starting treatment.

Nutritionist: all kinds of dietary stuff will be discussed; growth is monitored at all appts. Kids with CF present with all kinds of growth & nutritional issues depending on their disease presentation. Vitamin levels will usually be checked and further recommendations will be made once those results are back.

Doctor: As above posted by bkc, you'll talk about the meds (nebulizer or inhaler treatments to be done with whatever airway clearance you learn, possibly pancreatic enzymes, etc) and pretty much their whole philosophy at their center for approaching treatment. I would also talk to the dr. about getting the best genetic testing you can (i.e. the 'Ambry Amplified' test that has identified more than 1,500 mutations to date vs. a panel that looks for maybe 100 mutations.)

<div class="FTQUOTE"><begin quote>Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy.</end quote></div>
I totally agree with this. I was so overwhelmed in the days following Emily's dx, but to not know and not be able to help her would be so much worse. I hope the very best for the upcoming appt! Let us know how it goes.
 
H

hmw

New member
My heart goes out to you... we were in your place just about a year ago with our daughter, who was 7 at the time. We were pursuing answers for her- knowing something was very wrong with her- but CF as the diagnosis came out of left field. I was stunned and unprepared for the onslaught of questions and fears I'd go through and new care regimen that would become part of our life. So I can completely relate to what it is like to go through this with an older child, trying to sort out years of complicated history, figuring out sibling issues...

Getting your children seen at an accredited CF Center (which is generally a clinic at/affiliated with a hospital, not a small private office like her pediatrician might be) is very important when it comes to getting their care off to the right start and continuing to give them the best odds of future good health. They will get care from many different professionals at their visits~ a respiratory therapist, a pulmonary doctor, nurse, nutritionist, social worker, etc. Your first visit will likely take several hours, so be prepared for this going in!

Other things I can think of to add that may be done at this appt:

Respiratory therapist: PFT's will be done (your kids will likely have had these done before, with a hx of asthma. These are done at most, if not all, appts.) You'll discuss what kind of chest PT will be done. For example, Acapella (a handheld device you breathe into) or the Vest (this mimics the percussion of manual chest PT and is very widely used with kids.) Hopefully, you'll also be taught how to do manual chest PT as well.

Nurse: Sputum culture; or if she can't spit anything up, a throat culture. Kids with CF culture various bugs, including staph, pseudomonas, and many others. Based on what they find they can decide if any antibiotics are needed as well as determine what antibiotics the bugs are sensitive to before starting treatment.

Nutritionist: all kinds of dietary stuff will be discussed; growth is monitored at all appts. Kids with CF present with all kinds of growth & nutritional issues depending on their disease presentation. Vitamin levels will usually be checked and further recommendations will be made once those results are back.

Doctor: As above posted by bkc, you'll talk about the meds (nebulizer or inhaler treatments to be done with whatever airway clearance you learn, possibly pancreatic enzymes, etc) and pretty much their whole philosophy at their center for approaching treatment. I would also talk to the dr. about getting the best genetic testing you can (i.e. the 'Ambry Amplified' test that has identified more than 1,500 mutations to date vs. a panel that looks for maybe 100 mutations.)

<div class="FTQUOTE"><begin quote>Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy.</end quote></div>
I totally agree with this. I was so overwhelmed in the days following Emily's dx, but to not know and not be able to help her would be so much worse. I hope the very best for the upcoming appt! Let us know how it goes.
 
H

hmw

New member
My heart goes out to you... we were in your place just about a year ago with our daughter, who was 7 at the time. We were pursuing answers for her- knowing something was very wrong with her- but CF as the diagnosis came out of left field. I was stunned and unprepared for the onslaught of questions and fears I'd go through and new care regimen that would become part of our life. So I can completely relate to what it is like to go through this with an older child, trying to sort out years of complicated history, figuring out sibling issues...

Getting your children seen at an accredited CF Center (which is generally a clinic at/affiliated with a hospital, not a small private office like her pediatrician might be) is very important when it comes to getting their care off to the right start and continuing to give them the best odds of future good health. They will get care from many different professionals at their visits~ a respiratory therapist, a pulmonary doctor, nurse, nutritionist, social worker, etc. Your first visit will likely take several hours, so be prepared for this going in!

Other things I can think of to add that may be done at this appt:

Respiratory therapist: PFT's will be done (your kids will likely have had these done before, with a hx of asthma. These are done at most, if not all, appts.) You'll discuss what kind of chest PT will be done. For example, Acapella (a handheld device you breathe into) or the Vest (this mimics the percussion of manual chest PT and is very widely used with kids.) Hopefully, you'll also be taught how to do manual chest PT as well.

Nurse: Sputum culture; or if she can't spit anything up, a throat culture. Kids with CF culture various bugs, including staph, pseudomonas, and many others. Based on what they find they can decide if any antibiotics are needed as well as determine what antibiotics the bugs are sensitive to before starting treatment.

Nutritionist: all kinds of dietary stuff will be discussed; growth is monitored at all appts. Kids with CF present with all kinds of growth & nutritional issues depending on their disease presentation. Vitamin levels will usually be checked and further recommendations will be made once those results are back.

Doctor: As above posted by bkc, you'll talk about the meds (nebulizer or inhaler treatments to be done with whatever airway clearance you learn, possibly pancreatic enzymes, etc) and pretty much their whole philosophy at their center for approaching treatment. I would also talk to the dr. about getting the best genetic testing you can (i.e. the 'Ambry Amplified' test that has identified more than 1,500 mutations to date vs. a panel that looks for maybe 100 mutations.)

<div class="FTQUOTE"><begin quote>Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy.</end quote></div>
I totally agree with this. I was so overwhelmed in the days following Emily's dx, but to not know and not be able to help her would be so much worse. I hope the very best for the upcoming appt! Let us know how it goes.
 
H

hmw

New member
My heart goes out to you... we were in your place just about a year ago with our daughter, who was 7 at the time. We were pursuing answers for her- knowing something was very wrong with her- but CF as the diagnosis came out of left field. I was stunned and unprepared for the onslaught of questions and fears I'd go through and new care regimen that would become part of our life. So I can completely relate to what it is like to go through this with an older child, trying to sort out years of complicated history, figuring out sibling issues...

Getting your children seen at an accredited CF Center (which is generally a clinic at/affiliated with a hospital, not a small private office like her pediatrician might be) is very important when it comes to getting their care off to the right start and continuing to give them the best odds of future good health. They will get care from many different professionals at their visits~ a respiratory therapist, a pulmonary doctor, nurse, nutritionist, social worker, etc. Your first visit will likely take several hours, so be prepared for this going in!

Other things I can think of to add that may be done at this appt:

Respiratory therapist: PFT's will be done (your kids will likely have had these done before, with a hx of asthma. These are done at most, if not all, appts.) You'll discuss what kind of chest PT will be done. For example, Acapella (a handheld device you breathe into) or the Vest (this mimics the percussion of manual chest PT and is very widely used with kids.) Hopefully, you'll also be taught how to do manual chest PT as well.

Nurse: Sputum culture; or if she can't spit anything up, a throat culture. Kids with CF culture various bugs, including staph, pseudomonas, and many others. Based on what they find they can decide if any antibiotics are needed as well as determine what antibiotics the bugs are sensitive to before starting treatment.

Nutritionist: all kinds of dietary stuff will be discussed; growth is monitored at all appts. Kids with CF present with all kinds of growth & nutritional issues depending on their disease presentation. Vitamin levels will usually be checked and further recommendations will be made once those results are back.

Doctor: As above posted by bkc, you'll talk about the meds (nebulizer or inhaler treatments to be done with whatever airway clearance you learn, possibly pancreatic enzymes, etc) and pretty much their whole philosophy at their center for approaching treatment. I would also talk to the dr. about getting the best genetic testing you can (i.e. the 'Ambry Amplified' test that has identified more than 1,500 mutations to date vs. a panel that looks for maybe 100 mutations.)

<div class="FTQUOTE"><begin quote>Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy.</end quote>
I totally agree with this. I was so overwhelmed in the days following Emily's dx, but to not know and not be able to help her would be so much worse. I hope the very best for the upcoming appt! Let us know how it goes.
 
H

hmw

New member
My heart goes out to you... we were in your place just about a year ago with our daughter, who was 7 at the time. We were pursuing answers for her- knowing something was very wrong with her- but CF as the diagnosis came out of left field. I was stunned and unprepared for the onslaught of questions and fears I'd go through and new care regimen that would become part of our life. So I can completely relate to what it is like to go through this with an older child, trying to sort out years of complicated history, figuring out sibling issues...
<br />
<br />Getting your children seen at an accredited CF Center (which is generally a clinic at/affiliated with a hospital, not a small private office like her pediatrician might be) is very important when it comes to getting their care off to the right start and continuing to give them the best odds of future good health. They will get care from many different professionals at their visits~ a respiratory therapist, a pulmonary doctor, nurse, nutritionist, social worker, etc. Your first visit will likely take several hours, so be prepared for this going in!
<br />
<br />Other things I can think of to add that may be done at this appt:
<br />
<br />Respiratory therapist: PFT's will be done (your kids will likely have had these done before, with a hx of asthma. These are done at most, if not all, appts.) You'll discuss what kind of chest PT will be done. For example, Acapella (a handheld device you breathe into) or the Vest (this mimics the percussion of manual chest PT and is very widely used with kids.) Hopefully, you'll also be taught how to do manual chest PT as well.
<br />
<br />Nurse: Sputum culture; or if she can't spit anything up, a throat culture. Kids with CF culture various bugs, including staph, pseudomonas, and many others. Based on what they find they can decide if any antibiotics are needed as well as determine what antibiotics the bugs are sensitive to before starting treatment.
<br />
<br />Nutritionist: all kinds of dietary stuff will be discussed; growth is monitored at all appts. Kids with CF present with all kinds of growth & nutritional issues depending on their disease presentation. Vitamin levels will usually be checked and further recommendations will be made once those results are back.
<br />
<br />Doctor: As above posted by bkc, you'll talk about the meds (nebulizer or inhaler treatments to be done with whatever airway clearance you learn, possibly pancreatic enzymes, etc) and pretty much their whole philosophy at their center for approaching treatment. I would also talk to the dr. about getting the best genetic testing you can (i.e. the 'Ambry Amplified' test that has identified more than 1,500 mutations to date vs. a panel that looks for maybe 100 mutations.)
<br />
<br /><div class="FTQUOTE"><begin quote>Their diagnosis is difficult, but not having the diagnosis is much worse. Now you will be able to start taking precautionary measures and treatments to help keep them healthy.</end quote>
<br />I totally agree with this. I was so overwhelmed in the days following Emily's dx, but to not know and not be able to help her would be so much worse. I hope the very best for the upcoming appt! Let us know how it goes.
 
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