It is now official

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antonette1279

New member
Well we got work today that my son does in fact have CF however they are having a very hard time figuring out what mutation he has. Doctors say that there are SO many mutations and he was tested for the most common. He doesn't have the most common ones however he now has some sort of rare bacteria that they say usually only kids with CF get....AND they said they are going to keep doing testing until they find exactly what mutations he has....so for now...He has CF and we are still going through hell and back with all of his symptoms.
 
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antonette1279

New member
Well we got work today that my son does in fact have CF however they are having a very hard time figuring out what mutation he has. Doctors say that there are SO many mutations and he was tested for the most common. He doesn't have the most common ones however he now has some sort of rare bacteria that they say usually only kids with CF get....AND they said they are going to keep doing testing until they find exactly what mutations he has....so for now...He has CF and we are still going through hell and back with all of his symptoms.
 
A

antonette1279

New member
Well we got work today that my son does in fact have CF however they are having a very hard time figuring out what mutation he has. Doctors say that there are SO many mutations and he was tested for the most common. He doesn't have the most common ones however he now has some sort of rare bacteria that they say usually only kids with CF get....AND they said they are going to keep doing testing until they find exactly what mutations he has....so for now...He has CF and we are still going through hell and back with all of his symptoms.
 
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Mommafirst

Guest
I know this is a huge blow, but knowing means you will be able to treat him. If he is culturing pseudomonas or MRSA, then you'll be able to get him meds to control or knock them out.

Since there are over 1500 mutations, it can take many weeks to get back the full genetics. But as long as you have a diagnosis you can treat, and that is a good thing. (((HUGS)))
 
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Mommafirst

Guest
I know this is a huge blow, but knowing means you will be able to treat him. If he is culturing pseudomonas or MRSA, then you'll be able to get him meds to control or knock them out.

Since there are over 1500 mutations, it can take many weeks to get back the full genetics. But as long as you have a diagnosis you can treat, and that is a good thing. (((HUGS)))
 
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Mommafirst

Guest
I know this is a huge blow, but knowing means you will be able to treat him. If he is culturing pseudomonas or MRSA, then you'll be able to get him meds to control or knock them out.
<br />
<br />Since there are over 1500 mutations, it can take many weeks to get back the full genetics. But as long as you have a diagnosis you can treat, and that is a good thing. (((HUGS)))
 
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martysmom

New member
So sorry to hear about your son's diagnosis. We have all been there and it is not easy! Especially when it takes so long to diagnose and symptoms keep getting worse. We have been there. Neither of my son's mutations are in the common profile. We had to do a quest amplified test to find out his mutations and he has classical presentation of the disease. I hope you get more answers in the future but it is good for now that your baby will get the treatments to keep him well! (((HUGS))) Keeping you in my prayers!
 
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martysmom

New member
So sorry to hear about your son's diagnosis. We have all been there and it is not easy! Especially when it takes so long to diagnose and symptoms keep getting worse. We have been there. Neither of my son's mutations are in the common profile. We had to do a quest amplified test to find out his mutations and he has classical presentation of the disease. I hope you get more answers in the future but it is good for now that your baby will get the treatments to keep him well! (((HUGS))) Keeping you in my prayers!
 
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martysmom

New member
So sorry to hear about your son's diagnosis. We have all been there and it is not easy! Especially when it takes so long to diagnose and symptoms keep getting worse. We have been there. Neither of my son's mutations are in the common profile. We had to do a quest amplified test to find out his mutations and he has classical presentation of the disease. I hope you get more answers in the future but it is good for now that your baby will get the treatments to keep him well! (((HUGS))) Keeping you in my prayers!
 
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AleksandraKaczynska

New member
I'm sorry you're going through this - but like Mommafirst wrote - the sooner you start treatment - the better his health will stay. It's good to have the dignosis over and done. The questioning is the hardest...
My thought are with you
 
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AleksandraKaczynska

New member
I'm sorry you're going through this - but like Mommafirst wrote - the sooner you start treatment - the better his health will stay. It's good to have the dignosis over and done. The questioning is the hardest...
My thought are with you
 
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AleksandraKaczynska

New member
I'm sorry you're going through this - but like Mommafirst wrote - the sooner you start treatment - the better his health will stay. It's good to have the dignosis over and done. The questioning is the hardest...
<br />My thought are with you
 
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antonette1279

New member
Thank you everyone for your thoughts and support!! The poor little guy is ALWAYS congested...and I mean ALWAYS. It sounds like he is sick all the time. Hopefully he will start to get a little less congested soon..He has been on Pulmacort, xopenex, albuteral, prednisone, as well as a bunch of other things and still always congested
 
A

antonette1279

New member
Thank you everyone for your thoughts and support!! The poor little guy is ALWAYS congested...and I mean ALWAYS. It sounds like he is sick all the time. Hopefully he will start to get a little less congested soon..He has been on Pulmacort, xopenex, albuteral, prednisone, as well as a bunch of other things and still always congested
 
A

antonette1279

New member
Thank you everyone for your thoughts and support!! The poor little guy is ALWAYS congested...and I mean ALWAYS. It sounds like he is sick all the time. Hopefully he will start to get a little less congested soon..He has been on Pulmacort, xopenex, albuteral, prednisone, as well as a bunch of other things and still always congested
 
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