Help

momofchris · Apr 5, 2008

<img src="i/expressions/face-icon-small-confused.gif" border="0">Hello. I am very new to this but I have questions and the best way to get answers is to ask people who have been there.

Our son has been sick ever since he was 2 months old. He is 6 months now. We have 4 children in all. It all started with a cold???? He has been checked for RSV and this was neg. He has been treated with antibotics (both oral and a shot). He is currently being treated for asthma and GERD.

He dosen't have a growth problem. He breathing is bad. He is always whezzing and coughing. He looks like he is fighting for breath sometimes. He has a lot of congestion and thick spit he even chokes on. He is happy all the time even when he is sick.

His ped. doctor is the greatest. She finally sent him to a ped. pulmo. doctor and for a sweat test. This pulmo. doctor doesn't think it is asthma even though he responds to treatment (for awhile). So he has scheduled him for a bronchoscopy at a children's hospital away from our home.

Our ped. doctor was away on vacation and even called to check on our son. Just had to tell you guys this.

Well any way. The sweat test results finally came back but our ped. doctor was still on vacation. So another doctor in her group called or should I say her nurse called. When the nurse called she said it was normal. I asked for the result and it was 50... Everything I have read tells me this is boderline (he is 6 months old). So they sent the pulmo. doctor the result and he wants it repeated and DNA testing done.

I guess what I want is some help understanding all of this. Please, any information would be great. Thanks.

momofchris · Apr 5, 2008

<img src="i/expressions/face-icon-small-confused.gif" border="0">Hello. I am very new to this but I have questions and the best way to get answers is to ask people who have been there.

Our son has been sick ever since he was 2 months old. He is 6 months now. We have 4 children in all. It all started with a cold???? He has been checked for RSV and this was neg. He has been treated with antibotics (both oral and a shot). He is currently being treated for asthma and GERD.

He dosen't have a growth problem. He breathing is bad. He is always whezzing and coughing. He looks like he is fighting for breath sometimes. He has a lot of congestion and thick spit he even chokes on. He is happy all the time even when he is sick.

His ped. doctor is the greatest. She finally sent him to a ped. pulmo. doctor and for a sweat test. This pulmo. doctor doesn't think it is asthma even though he responds to treatment (for awhile). So he has scheduled him for a bronchoscopy at a children's hospital away from our home.

Our ped. doctor was away on vacation and even called to check on our son. Just had to tell you guys this.

Well any way. The sweat test results finally came back but our ped. doctor was still on vacation. So another doctor in her group called or should I say her nurse called. When the nurse called she said it was normal. I asked for the result and it was 50... Everything I have read tells me this is boderline (he is 6 months old). So they sent the pulmo. doctor the result and he wants it repeated and DNA testing done.

I guess what I want is some help understanding all of this. Please, any information would be great. Thanks.

momofchris · Apr 5, 2008

<img src="i/expressions/face-icon-small-confused.gif" border="0">Hello. I am very new to this but I have questions and the best way to get answers is to ask people who have been there.

Our son has been sick ever since he was 2 months old. He is 6 months now. We have 4 children in all. It all started with a cold???? He has been checked for RSV and this was neg. He has been treated with antibotics (both oral and a shot). He is currently being treated for asthma and GERD.

He dosen't have a growth problem. He breathing is bad. He is always whezzing and coughing. He looks like he is fighting for breath sometimes. He has a lot of congestion and thick spit he even chokes on. He is happy all the time even when he is sick.

His ped. doctor is the greatest. She finally sent him to a ped. pulmo. doctor and for a sweat test. This pulmo. doctor doesn't think it is asthma even though he responds to treatment (for awhile). So he has scheduled him for a bronchoscopy at a children's hospital away from our home.

Our ped. doctor was away on vacation and even called to check on our son. Just had to tell you guys this.

Well any way. The sweat test results finally came back but our ped. doctor was still on vacation. So another doctor in her group called or should I say her nurse called. When the nurse called she said it was normal. I asked for the result and it was 50... Everything I have read tells me this is boderline (he is 6 months old). So they sent the pulmo. doctor the result and he wants it repeated and DNA testing done.

I guess what I want is some help understanding all of this. Please, any information would be great. Thanks.

momofchris · Apr 5, 2008

<img src="i/expressions/face-icon-small-confused.gif" border="0">Hello. I am very new to this but I have questions and the best way to get answers is to ask people who have been there.

Our son has been sick ever since he was 2 months old. He is 6 months now. We have 4 children in all. It all started with a cold???? He has been checked for RSV and this was neg. He has been treated with antibotics (both oral and a shot). He is currently being treated for asthma and GERD.

He dosen't have a growth problem. He breathing is bad. He is always whezzing and coughing. He looks like he is fighting for breath sometimes. He has a lot of congestion and thick spit he even chokes on. He is happy all the time even when he is sick.

His ped. doctor is the greatest. She finally sent him to a ped. pulmo. doctor and for a sweat test. This pulmo. doctor doesn't think it is asthma even though he responds to treatment (for awhile). So he has scheduled him for a bronchoscopy at a children's hospital away from our home.

Our ped. doctor was away on vacation and even called to check on our son. Just had to tell you guys this.

Well any way. The sweat test results finally came back but our ped. doctor was still on vacation. So another doctor in her group called or should I say her nurse called. When the nurse called she said it was normal. I asked for the result and it was 50... Everything I have read tells me this is boderline (he is 6 months old). So they sent the pulmo. doctor the result and he wants it repeated and DNA testing done.

I guess what I want is some help understanding all of this. Please, any information would be great. Thanks.

momofchris · Apr 5, 2008

<img src="i/expressions/face-icon-small-confused.gif" border="0">Hello. I am very new to this but I have questions and the best way to get answers is to ask people who have been there.
 
 Our son has been sick ever since he was 2 months old. He is 6 months now. We have 4 children in all. It all started with a cold???? He has been checked for RSV and this was neg. He has been treated with antibotics (both oral and a shot). He is currently being treated for asthma and GERD.
 
 He dosen't have a growth problem. He breathing is bad. He is always whezzing and coughing. He looks like he is fighting for breath sometimes. He has a lot of congestion and thick spit he even chokes on. He is happy all the time even when he is sick.
 
 His ped. doctor is the greatest. She finally sent him to a ped. pulmo. doctor and for a sweat test. This pulmo. doctor doesn't think it is asthma even though he responds to treatment (for awhile). So he has scheduled him for a bronchoscopy at a children's hospital away from our home.
 
 Our ped. doctor was away on vacation and even called to check on our son. Just had to tell you guys this.
 
 Well any way. The sweat test results finally came back but our ped. doctor was still on vacation. So another doctor in her group called or should I say her nurse called. When the nurse called she said it was normal. I asked for the result and it was 50... Everything I have read tells me this is boderline (he is 6 months old). So they sent the pulmo. doctor the result and he wants it repeated and DNA testing done.
 
 I guess what I want is some help understanding all of this. Please, any information would be great. Thanks.

JazzysMom · Apr 5, 2008

My first ?? is......was the sweat test done at an accredited CF Center? ANY CF testing needs to be done at an accredited CF Center to minimize errors.

Secondly the borderline test with his symptoms definitely dictates additional testing should be done. Many times they will repeat the sweat test and then do genetic testing to look for the CF gene.

It is good that they are persuing it. IF your child has CF, the earlier he receives the proper care, the better for him.

IF you have any other ??.....keep posting & please keep us updated.

JazzysMom · Apr 5, 2008

My first ?? is......was the sweat test done at an accredited CF Center? ANY CF testing needs to be done at an accredited CF Center to minimize errors.

Secondly the borderline test with his symptoms definitely dictates additional testing should be done. Many times they will repeat the sweat test and then do genetic testing to look for the CF gene.

It is good that they are persuing it. IF your child has CF, the earlier he receives the proper care, the better for him.

IF you have any other ??.....keep posting & please keep us updated.

JazzysMom · Apr 5, 2008

My first ?? is......was the sweat test done at an accredited CF Center? ANY CF testing needs to be done at an accredited CF Center to minimize errors.

Secondly the borderline test with his symptoms definitely dictates additional testing should be done. Many times they will repeat the sweat test and then do genetic testing to look for the CF gene.

It is good that they are persuing it. IF your child has CF, the earlier he receives the proper care, the better for him.

IF you have any other ??.....keep posting & please keep us updated.

JazzysMom · Apr 5, 2008

My first ?? is......was the sweat test done at an accredited CF Center? ANY CF testing needs to be done at an accredited CF Center to minimize errors.

Secondly the borderline test with his symptoms definitely dictates additional testing should be done. Many times they will repeat the sweat test and then do genetic testing to look for the CF gene.

It is good that they are persuing it. IF your child has CF, the earlier he receives the proper care, the better for him.

IF you have any other ??.....keep posting & please keep us updated.

JazzysMom · Apr 5, 2008

My first ?? is......was the sweat test done at an accredited CF Center? ANY CF testing needs to be done at an accredited CF Center to minimize errors.
 
 Secondly the borderline test with his symptoms definitely dictates additional testing should be done. Many times they will repeat the sweat test and then do genetic testing to look for the CF gene.
 
 It is good that they are persuing it. IF your child has CF, the earlier he receives the proper care, the better for him.
 
 IF you have any other ??.....keep posting & please keep us updated.

MargaritaChic · Apr 5, 2008

Hi. Welcome to the forum.

Genetic testing requires them to take a small sample of blood to test for CF mutations. If they find 2 then most likely your child has CF. There are different Genetic tests they can preform though. Others on the board will be able to tell you which one is the best and tests for the most mutations.

I hope that your child does not have CF. But if he does, it is important to find out the sooner you can. There are many treatments available that can help people with CF live long, happy lives.

For now, just enjoy your precious baby boy! I have a baby girl that is 4 months old with CF. She is doing great.

(((hugs))
Marla

MargaritaChic · Apr 5, 2008

Hi. Welcome to the forum.

Genetic testing requires them to take a small sample of blood to test for CF mutations. If they find 2 then most likely your child has CF. There are different Genetic tests they can preform though. Others on the board will be able to tell you which one is the best and tests for the most mutations.

I hope that your child does not have CF. But if he does, it is important to find out the sooner you can. There are many treatments available that can help people with CF live long, happy lives.

For now, just enjoy your precious baby boy! I have a baby girl that is 4 months old with CF. She is doing great.

(((hugs))
Marla

MargaritaChic · Apr 5, 2008

Hi. Welcome to the forum.

Genetic testing requires them to take a small sample of blood to test for CF mutations. If they find 2 then most likely your child has CF. There are different Genetic tests they can preform though. Others on the board will be able to tell you which one is the best and tests for the most mutations.

I hope that your child does not have CF. But if he does, it is important to find out the sooner you can. There are many treatments available that can help people with CF live long, happy lives.

For now, just enjoy your precious baby boy! I have a baby girl that is 4 months old with CF. She is doing great.

(((hugs))
Marla

MargaritaChic · Apr 5, 2008

Hi. Welcome to the forum.

Genetic testing requires them to take a small sample of blood to test for CF mutations. If they find 2 then most likely your child has CF. There are different Genetic tests they can preform though. Others on the board will be able to tell you which one is the best and tests for the most mutations.

I hope that your child does not have CF. But if he does, it is important to find out the sooner you can. There are many treatments available that can help people with CF live long, happy lives.

For now, just enjoy your precious baby boy! I have a baby girl that is 4 months old with CF. She is doing great.

(((hugs))
Marla

MargaritaChic · Apr 5, 2008

Hi. Welcome to the forum.
 
 Genetic testing requires them to take a small sample of blood to test for CF mutations. If they find 2 then most likely your child has CF. There are different Genetic tests they can preform though. Others on the board will be able to tell you which one is the best and tests for the most mutations.
 
 I hope that your child does not have CF. But if he does, it is important to find out the sooner you can. There are many treatments available that can help people with CF live long, happy lives.
 
 For now, just enjoy your precious baby boy! I have a baby girl that is 4 months old with CF. She is doing great.
 
 (((hugs))
 Marla

sdelorenzo · Apr 5, 2008

Welcome! Sorry to hear about everything your son is going through. Good for you for asking about the exact number for the sweat test. 50 is a pretty high borderline score. There are quite a few parents on this site whose children had borderline scores whose kids ended up having cf. It sounds like everything is on track to get help for your son. The drs are taking your sons issues seriously and the appropriate testing is being done. Just make sure that if the dna testing comes back negative that you push to test all of the 1500 or so genes for cf. The standard test just tests for 40 of the most common ones.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Apr 5, 2008

Welcome! Sorry to hear about everything your son is going through. Good for you for asking about the exact number for the sweat test. 50 is a pretty high borderline score. There are quite a few parents on this site whose children had borderline scores whose kids ended up having cf. It sounds like everything is on track to get help for your son. The drs are taking your sons issues seriously and the appropriate testing is being done. Just make sure that if the dna testing comes back negative that you push to test all of the 1500 or so genes for cf. The standard test just tests for 40 of the most common ones.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Apr 5, 2008

Welcome! Sorry to hear about everything your son is going through. Good for you for asking about the exact number for the sweat test. 50 is a pretty high borderline score. There are quite a few parents on this site whose children had borderline scores whose kids ended up having cf. It sounds like everything is on track to get help for your son. The drs are taking your sons issues seriously and the appropriate testing is being done. Just make sure that if the dna testing comes back negative that you push to test all of the 1500 or so genes for cf. The standard test just tests for 40 of the most common ones.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Apr 5, 2008

Welcome! Sorry to hear about everything your son is going through. Good for you for asking about the exact number for the sweat test. 50 is a pretty high borderline score. There are quite a few parents on this site whose children had borderline scores whose kids ended up having cf. It sounds like everything is on track to get help for your son. The drs are taking your sons issues seriously and the appropriate testing is being done. Just make sure that if the dna testing comes back negative that you push to test all of the 1500 or so genes for cf. The standard test just tests for 40 of the most common ones.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Apr 5, 2008

Welcome! Sorry to hear about everything your son is going through. Good for you for asking about the exact number for the sweat test. 50 is a pretty high borderline score. There are quite a few parents on this site whose children had borderline scores whose kids ended up having cf. It sounds like everything is on track to get help for your son. The drs are taking your sons issues seriously and the appropriate testing is being done. Just make sure that if the dna testing comes back negative that you push to test all of the 1500 or so genes for cf. The standard test just tests for 40 of the most common ones.
 Sharon, mom of Sophia, 6 and Jack, 4 both with cf

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