I need some help

T

tammykrumrey

Guest
I would not waste anymore time, and go straight for genetic testing. I agree with others, find the nearest CF clinic and explain exactly what you have just written. I cannot imagine that they would even think twice about running a genetic test. He seems to have a lot of symptoms, even though other diseases can have the same. But you said that he already had one positive sweat test. That in itself is reason enough for genetic testing in my opinion.
 

NoExcuses

New member
I still don't know why sweat tests are even done anymore. So many false negatives or false positives. It's archaic.

Full panel genetic testing with every CF gene identified is the only way to go.
 

NoExcuses

New member
I still don't know why sweat tests are even done anymore. So many false negatives or false positives. It's archaic.

Full panel genetic testing with every CF gene identified is the only way to go.
 

NoExcuses

New member
I still don't know why sweat tests are even done anymore. So many false negatives or false positives. It's archaic.

Full panel genetic testing with every CF gene identified is the only way to go.
 

lovemyboys

New member
I took him to the new peditrician today and showed her the results from his medical records. She seems to think if the doctors at the Childrens Hospital had thought it was negative then he more than likely does't have it. I was very frustated and showed her the positive one, and told her I thought that if you tested positive more than likely you have it. I told her I wanted genetic testing done on him since he did not receive it in 2000. She said she didn't want to jump the gun, she wants to look over all his medical records first. I said for my peace of mind I would really like to get it done. I can't believe these doctors, it's not like they are having to pay for the testing. I don't care if I had to pay it all I just want to know for sure! It's been long enough. I suppose to take him back to her in 2 weeks so if nothing is going to be done then, I will call the childrens hospital and make an appointment with them. She didn't even take any blood samples or anything like that. She just said he has asthma. Even after she gave him the breathing test and then used the inhaler on him and tested his breathing again, she said the test results said the inhaler decreased his breathing ability, but still wrote a prescription for an inhaler???? Does that make any since, if the inhaler made it worse??? Please pray that she will give him the genetic test so if he does have it we can finally get him the care he needs. Oh she also says that he is very small so she might have an xray done to his wrist and check his bones?? I'm not sure why,but anything to get to the bottom of things.
 

lovemyboys

New member
I took him to the new peditrician today and showed her the results from his medical records. She seems to think if the doctors at the Childrens Hospital had thought it was negative then he more than likely does't have it. I was very frustated and showed her the positive one, and told her I thought that if you tested positive more than likely you have it. I told her I wanted genetic testing done on him since he did not receive it in 2000. She said she didn't want to jump the gun, she wants to look over all his medical records first. I said for my peace of mind I would really like to get it done. I can't believe these doctors, it's not like they are having to pay for the testing. I don't care if I had to pay it all I just want to know for sure! It's been long enough. I suppose to take him back to her in 2 weeks so if nothing is going to be done then, I will call the childrens hospital and make an appointment with them. She didn't even take any blood samples or anything like that. She just said he has asthma. Even after she gave him the breathing test and then used the inhaler on him and tested his breathing again, she said the test results said the inhaler decreased his breathing ability, but still wrote a prescription for an inhaler???? Does that make any since, if the inhaler made it worse??? Please pray that she will give him the genetic test so if he does have it we can finally get him the care he needs. Oh she also says that he is very small so she might have an xray done to his wrist and check his bones?? I'm not sure why,but anything to get to the bottom of things.
 

lovemyboys

New member
I took him to the new peditrician today and showed her the results from his medical records. She seems to think if the doctors at the Childrens Hospital had thought it was negative then he more than likely does't have it. I was very frustated and showed her the positive one, and told her I thought that if you tested positive more than likely you have it. I told her I wanted genetic testing done on him since he did not receive it in 2000. She said she didn't want to jump the gun, she wants to look over all his medical records first. I said for my peace of mind I would really like to get it done. I can't believe these doctors, it's not like they are having to pay for the testing. I don't care if I had to pay it all I just want to know for sure! It's been long enough. I suppose to take him back to her in 2 weeks so if nothing is going to be done then, I will call the childrens hospital and make an appointment with them. She didn't even take any blood samples or anything like that. She just said he has asthma. Even after she gave him the breathing test and then used the inhaler on him and tested his breathing again, she said the test results said the inhaler decreased his breathing ability, but still wrote a prescription for an inhaler???? Does that make any since, if the inhaler made it worse??? Please pray that she will give him the genetic test so if he does have it we can finally get him the care he needs. Oh she also says that he is very small so she might have an xray done to his wrist and check his bones?? I'm not sure why,but anything to get to the bottom of things.
 

NoExcuses

New member
I would take my son door to door to every doctor I could reach until someone ordered me a genetic test.

Like you said - they have nothing to lose. What's wrong with ordering the test? They don't pay for it?

There has to be someone willing to order the test for you - and I wouldn't leave the doctor's office until I had one.

This is your son - and he deserves teh best treatment for whatever is ailing him....
 

NoExcuses

New member
I would take my son door to door to every doctor I could reach until someone ordered me a genetic test.

Like you said - they have nothing to lose. What's wrong with ordering the test? They don't pay for it?

There has to be someone willing to order the test for you - and I wouldn't leave the doctor's office until I had one.

This is your son - and he deserves teh best treatment for whatever is ailing him....
 

NoExcuses

New member
I would take my son door to door to every doctor I could reach until someone ordered me a genetic test.

Like you said - they have nothing to lose. What's wrong with ordering the test? They don't pay for it?

There has to be someone willing to order the test for you - and I wouldn't leave the doctor's office until I had one.

This is your son - and he deserves teh best treatment for whatever is ailing him....
 

Alyssa

New member
I don't understand why <b>any</b> doctor would drag their feet on this one !!!

Change doctors if you need to -- get to a CF clinic and get full genetic testing. There are certainly enough red flags to warrant genetic testing. Do what ever you have to do to get it done.

Best of luck, please keep us updated.
 

Alyssa

New member
I don't understand why <b>any</b> doctor would drag their feet on this one !!!

Change doctors if you need to -- get to a CF clinic and get full genetic testing. There are certainly enough red flags to warrant genetic testing. Do what ever you have to do to get it done.

Best of luck, please keep us updated.
 

Alyssa

New member
I don't understand why <b>any</b> doctor would drag their feet on this one !!!

Change doctors if you need to -- get to a CF clinic and get full genetic testing. There are certainly enough red flags to warrant genetic testing. Do what ever you have to do to get it done.

Best of luck, please keep us updated.
 
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