Should I push for Genetic testing? Or is it all in my head.

[momburchx2]

Ever since the sweat test was ordered last week (Sam gets it on Dec. 5th) I have been reading everything I can. Now my husband says it is all in my head, or son is fine and to leave it alone. Am I imaging things?<img src="i/expressions/face-icon-small-confused.gif" border="0">

Sam was born premature
No bowel movement for 48 hours - jaundice and under light for 7 days
first sinuitis at 2 months
Multiple bronchitus and URI's until age of 4 (mild colds since then he is 9
Pneumonia at 18 months
A persisistant cough that comes and goes with no fever
Reflux - worse when younger he would "throw up mucus" with any activity.
He complains often of stomach cramps and has gas but not many bowel
movements
Fingers are slightly misshaped (he thinks they look wierd)
His nose always bothers him<img src="i/expressions/nosepick.gif" border="0">

At this point he is active healthy and is growing fine although today he woke up and said mucus was in his throat again and his nose was runny. (I have had a cold all week.)

 

[momburchx2]

Ever since the sweat test was ordered last week (Sam gets it on Dec. 5th) I have been reading everything I can. Now my husband says it is all in my head, or son is fine and to leave it alone. Am I imaging things?<img src="i/expressions/face-icon-small-confused.gif" border="0">

Sam was born premature
No bowel movement for 48 hours - jaundice and under light for 7 days
first sinuitis at 2 months
Multiple bronchitus and URI's until age of 4 (mild colds since then he is 9
Pneumonia at 18 months
A persisistant cough that comes and goes with no fever
Reflux - worse when younger he would "throw up mucus" with any activity.
He complains often of stomach cramps and has gas but not many bowel
movements
Fingers are slightly misshaped (he thinks they look wierd)
His nose always bothers him<img src="i/expressions/nosepick.gif" border="0">

At this point he is active healthy and is growing fine although today he woke up and said mucus was in his throat again and his nose was runny. (I have had a cold all week.)

 

[momburchx2]

Ever since the sweat test was ordered last week (Sam gets it on Dec. 5th) I have been reading everything I can. Now my husband says it is all in my head, or son is fine and to leave it alone. Am I imaging things?<img src="i/expressions/face-icon-small-confused.gif" border="0">

Sam was born premature
No bowel movement for 48 hours - jaundice and under light for 7 days
first sinuitis at 2 months
Multiple bronchitus and URI's until age of 4 (mild colds since then he is 9
Pneumonia at 18 months
A persisistant cough that comes and goes with no fever
Reflux - worse when younger he would "throw up mucus" with any activity.
He complains often of stomach cramps and has gas but not many bowel
movements
Fingers are slightly misshaped (he thinks they look wierd)
His nose always bothers him<img src="i/expressions/nosepick.gif" border="0">

At this point he is active healthy and is growing fine although today he woke up and said mucus was in his throat again and his nose was runny. (I have had a cold all week.)

 

[momburchx2]

Ever since the sweat test was ordered last week (Sam gets it on Dec. 5th) I have been reading everything I can. Now my husband says it is all in my head, or son is fine and to leave it alone. Am I imaging things?<img src="i/expressions/face-icon-small-confused.gif" border="0">

Sam was born premature
No bowel movement for 48 hours - jaundice and under light for 7 days
first sinuitis at 2 months
Multiple bronchitus and URI's until age of 4 (mild colds since then he is 9
Pneumonia at 18 months
A persisistant cough that comes and goes with no fever
Reflux - worse when younger he would "throw up mucus" with any activity.
He complains often of stomach cramps and has gas but not many bowel
movements
Fingers are slightly misshaped (he thinks they look wierd)
His nose always bothers him<img src="i/expressions/nosepick.gif" border="0">

At this point he is active healthy and is growing fine although today he woke up and said mucus was in his throat again and his nose was runny. (I have had a cold all week.)

 

[momburchx2]

Ever since the sweat test was ordered last week (Sam gets it on Dec. 5th) I have been reading everything I can. Now my husband says it is all in my head, or son is fine and to leave it alone. Am I imaging things?<img src="i/expressions/face-icon-small-confused.gif" border="0">

Sam was born premature
No bowel movement for 48 hours - jaundice and under light for 7 days
first sinuitis at 2 months
Multiple bronchitus and URI's until age of 4 (mild colds since then he is 9
Pneumonia at 18 months
A persisistant cough that comes and goes with no fever
Reflux - worse when younger he would "throw up mucus" with any activity.
He complains often of stomach cramps and has gas but not many bowel
movements
Fingers are slightly misshaped (he thinks they look wierd)
His nose always bothers him<img src="i/expressions/nosepick.gif" border="0">

At this point he is active healthy and is growing fine although today he woke up and said mucus was in his throat again and his nose was runny. (I have had a cold all week.)

 

[Buckeye]

You should try to push them to get the sweat test sooner, that's rediculous to make you wait three weeks for just a simple sweat test. After you get the sweat test and if it is negative or borderline then you would want to push for the genetic test. Sweat tests are very accurate for diagnosing CF if they child has a high sweat which the majority of CF kids do, the problem is that some kids have lower sweats and still have CF. So if it's over 60 they will be fairly certain he has CF, under 60 then you want to push for more extensive testing so you can safely rule out CF. Hope that's not confusing.

 

[Buckeye]

You should try to push them to get the sweat test sooner, that's rediculous to make you wait three weeks for just a simple sweat test. After you get the sweat test and if it is negative or borderline then you would want to push for the genetic test. Sweat tests are very accurate for diagnosing CF if they child has a high sweat which the majority of CF kids do, the problem is that some kids have lower sweats and still have CF. So if it's over 60 they will be fairly certain he has CF, under 60 then you want to push for more extensive testing so you can safely rule out CF. Hope that's not confusing.

 

[Buckeye]

You should try to push them to get the sweat test sooner, that's rediculous to make you wait three weeks for just a simple sweat test. After you get the sweat test and if it is negative or borderline then you would want to push for the genetic test. Sweat tests are very accurate for diagnosing CF if they child has a high sweat which the majority of CF kids do, the problem is that some kids have lower sweats and still have CF. So if it's over 60 they will be fairly certain he has CF, under 60 then you want to push for more extensive testing so you can safely rule out CF. Hope that's not confusing.

 

[Buckeye]

You should try to push them to get the sweat test sooner, that's rediculous to make you wait three weeks for just a simple sweat test. After you get the sweat test and if it is negative or borderline then you would want to push for the genetic test. Sweat tests are very accurate for diagnosing CF if they child has a high sweat which the majority of CF kids do, the problem is that some kids have lower sweats and still have CF. So if it's over 60 they will be fairly certain he has CF, under 60 then you want to push for more extensive testing so you can safely rule out CF. Hope that's not confusing.

 

[Buckeye]

You should try to push them to get the sweat test sooner, that's rediculous to make you wait three weeks for just a simple sweat test. After you get the sweat test and if it is negative or borderline then you would want to push for the genetic test. Sweat tests are very accurate for diagnosing CF if they child has a high sweat which the majority of CF kids do, the problem is that some kids have lower sweats and still have CF. So if it's over 60 they will be fairly certain he has CF, under 60 then you want to push for more extensive testing so you can safely rule out CF. Hope that's not confusing.

 

[JORDYSMOM]

Hi there. Obviously there is something going on with your son. Tell your husband that if it's all in your head, then the tests will prove you wrong. Listen to your mommy voice. It's not normal to have constant stomach and sinus issues. I thought for years that it was. I had doctors tell me that it was just allergies. My son went 15 years without proper diagnosis. He is now healthier than he's been in a good while, because he gets the proper care.

Sometimes CF isn't obvious. With the symptoms you have described, I would say that he needs to be tested. Yes it could be something else, but you won't know for sure unless you check.

The problem with sweat tests is this. Some people with CF have sweat tests in the "normal" range. A lot of people here do. I understand that insurance companies want to do testing in a certain (CHEAPER FOR THEM) order. Do what you have to, but get the full panel genetic test. Just because they draw blood and tell you it's a genetic test, does not mean they are testing for all known mutations. There are over 1800 now. Keep pushing for it.

I wish the best for you and your family. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi there. Obviously there is something going on with your son. Tell your husband that if it's all in your head, then the tests will prove you wrong. Listen to your mommy voice. It's not normal to have constant stomach and sinus issues. I thought for years that it was. I had doctors tell me that it was just allergies. My son went 15 years without proper diagnosis. He is now healthier than he's been in a good while, because he gets the proper care.

Sometimes CF isn't obvious. With the symptoms you have described, I would say that he needs to be tested. Yes it could be something else, but you won't know for sure unless you check.

The problem with sweat tests is this. Some people with CF have sweat tests in the "normal" range. A lot of people here do. I understand that insurance companies want to do testing in a certain (CHEAPER FOR THEM) order. Do what you have to, but get the full panel genetic test. Just because they draw blood and tell you it's a genetic test, does not mean they are testing for all known mutations. There are over 1800 now. Keep pushing for it.

I wish the best for you and your family. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi there. Obviously there is something going on with your son. Tell your husband that if it's all in your head, then the tests will prove you wrong. Listen to your mommy voice. It's not normal to have constant stomach and sinus issues. I thought for years that it was. I had doctors tell me that it was just allergies. My son went 15 years without proper diagnosis. He is now healthier than he's been in a good while, because he gets the proper care.

Sometimes CF isn't obvious. With the symptoms you have described, I would say that he needs to be tested. Yes it could be something else, but you won't know for sure unless you check.

The problem with sweat tests is this. Some people with CF have sweat tests in the "normal" range. A lot of people here do. I understand that insurance companies want to do testing in a certain (CHEAPER FOR THEM) order. Do what you have to, but get the full panel genetic test. Just because they draw blood and tell you it's a genetic test, does not mean they are testing for all known mutations. There are over 1800 now. Keep pushing for it.

I wish the best for you and your family. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi there. Obviously there is something going on with your son. Tell your husband that if it's all in your head, then the tests will prove you wrong. Listen to your mommy voice. It's not normal to have constant stomach and sinus issues. I thought for years that it was. I had doctors tell me that it was just allergies. My son went 15 years without proper diagnosis. He is now healthier than he's been in a good while, because he gets the proper care.

Sometimes CF isn't obvious. With the symptoms you have described, I would say that he needs to be tested. Yes it could be something else, but you won't know for sure unless you check.

The problem with sweat tests is this. Some people with CF have sweat tests in the "normal" range. A lot of people here do. I understand that insurance companies want to do testing in a certain (CHEAPER FOR THEM) order. Do what you have to, but get the full panel genetic test. Just because they draw blood and tell you it's a genetic test, does not mean they are testing for all known mutations. There are over 1800 now. Keep pushing for it.

I wish the best for you and your family. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi there. Obviously there is something going on with your son. Tell your husband that if it's all in your head, then the tests will prove you wrong. Listen to your mommy voice. It's not normal to have constant stomach and sinus issues. I thought for years that it was. I had doctors tell me that it was just allergies. My son went 15 years without proper diagnosis. He is now healthier than he's been in a good while, because he gets the proper care.

Sometimes CF isn't obvious. With the symptoms you have described, I would say that he needs to be tested. Yes it could be something else, but you won't know for sure unless you check.

The problem with sweat tests is this. Some people with CF have sweat tests in the "normal" range. A lot of people here do. I understand that insurance companies want to do testing in a certain (CHEAPER FOR THEM) order. Do what you have to, but get the full panel genetic test. Just because they draw blood and tell you it's a genetic test, does not mean they are testing for all known mutations. There are over 1800 now. Keep pushing for it.

I wish the best for you and your family. Let us know what happens.

Stacey

 

[Ratatosk]

Ugh, bad enough dealing with a child who is sick and not getting a clear diagnosis and then having issues with a spouse about overreacting. DH and I got into a row early on, shortly after DS was diagnosed over a cough..

We'd taken DS for his 2 month check up and he had a cough -- a horrible cough in which I'd have to hold DS over floor drains and sinks because he'd vomit up mucus and all his formula. The doctor heard his cough at the appointment and told me "they cough, that's what cfers do". This went on for weeks. I'd cry, we'd argue -- DH would tell me that "the doctor said he was fine" Then went on to accuse me of WANTING him to be sick -- as if I had munchausen by proxy. I felt sooo alone, was so worried... Finally he had a recheck with his CF doctor in the city. First his nurse heard the cough and looked worried, said that it wasn't good. Then his doctor came in and pretty much yelled us us because DS had bronchitis due to an enterbactor choclae bug he'd brought home from the nicu.

So my husband learned not to be so complacent and just believe the doctor when told "every thing is okay" and I learned to speak my mind, take DS in when something isn't right. In fact, when I've complained about medical care, the doctor not taking me serious whether it's my care or our son's, DH reminds me that "we are the customer and we're PAYING for that doctor's appointment". So speak up!

Sorry this was so long, but I guess I'd go with "there's something not right with our child's health. Let's just have tests done so we can rule out CF. We need to find out what's wrong with him".

 

[Ratatosk]

Ugh, bad enough dealing with a child who is sick and not getting a clear diagnosis and then having issues with a spouse about overreacting. DH and I got into a row early on, shortly after DS was diagnosed over a cough..

We'd taken DS for his 2 month check up and he had a cough -- a horrible cough in which I'd have to hold DS over floor drains and sinks because he'd vomit up mucus and all his formula. The doctor heard his cough at the appointment and told me "they cough, that's what cfers do". This went on for weeks. I'd cry, we'd argue -- DH would tell me that "the doctor said he was fine" Then went on to accuse me of WANTING him to be sick -- as if I had munchausen by proxy. I felt sooo alone, was so worried... Finally he had a recheck with his CF doctor in the city. First his nurse heard the cough and looked worried, said that it wasn't good. Then his doctor came in and pretty much yelled us us because DS had bronchitis due to an enterbactor choclae bug he'd brought home from the nicu.

So my husband learned not to be so complacent and just believe the doctor when told "every thing is okay" and I learned to speak my mind, take DS in when something isn't right. In fact, when I've complained about medical care, the doctor not taking me serious whether it's my care or our son's, DH reminds me that "we are the customer and we're PAYING for that doctor's appointment". So speak up!

Sorry this was so long, but I guess I'd go with "there's something not right with our child's health. Let's just have tests done so we can rule out CF. We need to find out what's wrong with him".

 

[Ratatosk]

Ugh, bad enough dealing with a child who is sick and not getting a clear diagnosis and then having issues with a spouse about overreacting. DH and I got into a row early on, shortly after DS was diagnosed over a cough..

We'd taken DS for his 2 month check up and he had a cough -- a horrible cough in which I'd have to hold DS over floor drains and sinks because he'd vomit up mucus and all his formula. The doctor heard his cough at the appointment and told me "they cough, that's what cfers do". This went on for weeks. I'd cry, we'd argue -- DH would tell me that "the doctor said he was fine" Then went on to accuse me of WANTING him to be sick -- as if I had munchausen by proxy. I felt sooo alone, was so worried... Finally he had a recheck with his CF doctor in the city. First his nurse heard the cough and looked worried, said that it wasn't good. Then his doctor came in and pretty much yelled us us because DS had bronchitis due to an enterbactor choclae bug he'd brought home from the nicu.

So my husband learned not to be so complacent and just believe the doctor when told "every thing is okay" and I learned to speak my mind, take DS in when something isn't right. In fact, when I've complained about medical care, the doctor not taking me serious whether it's my care or our son's, DH reminds me that "we are the customer and we're PAYING for that doctor's appointment". So speak up!

Sorry this was so long, but I guess I'd go with "there's something not right with our child's health. Let's just have tests done so we can rule out CF. We need to find out what's wrong with him".

 

[Ratatosk]

Ugh, bad enough dealing with a child who is sick and not getting a clear diagnosis and then having issues with a spouse about overreacting. DH and I got into a row early on, shortly after DS was diagnosed over a cough..

We'd taken DS for his 2 month check up and he had a cough -- a horrible cough in which I'd have to hold DS over floor drains and sinks because he'd vomit up mucus and all his formula. The doctor heard his cough at the appointment and told me "they cough, that's what cfers do". This went on for weeks. I'd cry, we'd argue -- DH would tell me that "the doctor said he was fine" Then went on to accuse me of WANTING him to be sick -- as if I had munchausen by proxy. I felt sooo alone, was so worried... Finally he had a recheck with his CF doctor in the city. First his nurse heard the cough and looked worried, said that it wasn't good. Then his doctor came in and pretty much yelled us us because DS had bronchitis due to an enterbactor choclae bug he'd brought home from the nicu.

So my husband learned not to be so complacent and just believe the doctor when told "every thing is okay" and I learned to speak my mind, take DS in when something isn't right. In fact, when I've complained about medical care, the doctor not taking me serious whether it's my care or our son's, DH reminds me that "we are the customer and we're PAYING for that doctor's appointment". So speak up!

Sorry this was so long, but I guess I'd go with "there's something not right with our child's health. Let's just have tests done so we can rule out CF. We need to find out what's wrong with him".

 

[Ratatosk]

Ugh, bad enough dealing with a child who is sick and not getting a clear diagnosis and then having issues with a spouse about overreacting. DH and I got into a row early on, shortly after DS was diagnosed over a cough..

We'd taken DS for his 2 month check up and he had a cough -- a horrible cough in which I'd have to hold DS over floor drains and sinks because he'd vomit up mucus and all his formula. The doctor heard his cough at the appointment and told me "they cough, that's what cfers do". This went on for weeks. I'd cry, we'd argue -- DH would tell me that "the doctor said he was fine" Then went on to accuse me of WANTING him to be sick -- as if I had munchausen by proxy. I felt sooo alone, was so worried... Finally he had a recheck with his CF doctor in the city. First his nurse heard the cough and looked worried, said that it wasn't good. Then his doctor came in and pretty much yelled us us because DS had bronchitis due to an enterbactor choclae bug he'd brought home from the nicu.

So my husband learned not to be so complacent and just believe the doctor when told "every thing is okay" and I learned to speak my mind, take DS in when something isn't right. In fact, when I've complained about medical care, the doctor not taking me serious whether it's my care or our son's, DH reminds me that "we are the customer and we're PAYING for that doctor's appointment". So speak up!

Sorry this was so long, but I guess I'd go with "there's something not right with our child's health. Let's just have tests done so we can rule out CF. We need to find out what's wrong with him".