Went in today

[wishfulmom]

My daughter went to the hospital for two weeks of cleaning out last april 2008. Since March of this year on and off shes been doing night coughing and throwing up. She has been on antibotics for 2 weeks dose,4 times each. The meds would work,then after the meds she will start coughing and throwing up again. So June 11 we might have to go in for another 2 week cleaning. She also cant get rid of night coughing, hopefully they can figure out whats going on,I feel so bad for her. Especially when you try to do everything you can do and it seems like it doesnt help.

 

[wishfulmom]

My daughter went to the hospital for two weeks of cleaning out last april 2008. Since March of this year on and off shes been doing night coughing and throwing up. She has been on antibotics for 2 weeks dose,4 times each. The meds would work,then after the meds she will start coughing and throwing up again. So June 11 we might have to go in for another 2 week cleaning. She also cant get rid of night coughing, hopefully they can figure out whats going on,I feel so bad for her. Especially when you try to do everything you can do and it seems like it doesnt help.

 

[wishfulmom]

My daughter went to the hospital for two weeks of cleaning out last april 2008. Since March of this year on and off shes been doing night coughing and throwing up. She has been on antibotics for 2 weeks dose,4 times each. The meds would work,then after the meds she will start coughing and throwing up again. So June 11 we might have to go in for another 2 week cleaning. She also cant get rid of night coughing, hopefully they can figure out whats going on,I feel so bad for her. Especially when you try to do everything you can do and it seems like it doesnt help.

 

[wishfulmom]

My daughter went to the hospital for two weeks of cleaning out last april 2008. Since March of this year on and off shes been doing night coughing and throwing up. She has been on antibotics for 2 weeks dose,4 times each. The meds would work,then after the meds she will start coughing and throwing up again. So June 11 we might have to go in for another 2 week cleaning. She also cant get rid of night coughing, hopefully they can figure out whats going on,I feel so bad for her. Especially when you try to do everything you can do and it seems like it doesnt help.

 

[wishfulmom]

My daughter went to the hospital for two weeks of cleaning out last april 2008. Since March of this year on and off shes been doing night coughing and throwing up. She has been on antibotics for 2 weeks dose,4 times each. The meds would work,then after the meds she will start coughing and throwing up again. So June 11 we might have to go in for another 2 week cleaning. She also cant get rid of night coughing, hopefully they can figure out whats going on,I feel so bad for her. Especially when you try to do everything you can do and it seems like it doesnt help.

 

[MaksNana]

Amy, You have the right to be angry at this 'stupid disease'.I know your daughter went in the hospital back in Feb, I hope she is doing well.I was wondering when your kids get a test done , do you ask for a copy of the results? The reason I ask is because when you have the results in your hands you can pick it up a year later and understand something that you thought a year ago was a forein language...I know you said that your daughter has the double mutation M470V,and was told these were considered 'non disease causing'. I could be wrong and not an expert at this,,,but I thought still to this day that they do not know the effects of the role genes play on a person.Even if two kids in the same home have 2Df508,(which that has been the most studyed one)the kids could and would have different symtoms... They may not have enough reserch done on your childs mutations yet.
I think chrissyd has a good idea about keeping a notebook.But, don't use it for just asking the doctors questions,,, use it to write down any change's in your child,, even the slightest changes,(those slight changes are the ones that sneak up on you).
I was told a few years back "KNOWLEDGE IS POWER", and oh how true that is !!!This disease is so COMPLEX, I don't know if in a life time we will understand everything,but resrching and getting all the imfo you can get will help sooner or later, I promise.

We will be here to help always, and God Bless

 

[MaksNana]

Amy, You have the right to be angry at this 'stupid disease'.I know your daughter went in the hospital back in Feb, I hope she is doing well.I was wondering when your kids get a test done , do you ask for a copy of the results? The reason I ask is because when you have the results in your hands you can pick it up a year later and understand something that you thought a year ago was a forein language...I know you said that your daughter has the double mutation M470V,and was told these were considered 'non disease causing'. I could be wrong and not an expert at this,,,but I thought still to this day that they do not know the effects of the role genes play on a person.Even if two kids in the same home have 2Df508,(which that has been the most studyed one)the kids could and would have different symtoms... They may not have enough reserch done on your childs mutations yet.
I think chrissyd has a good idea about keeping a notebook.But, don't use it for just asking the doctors questions,,, use it to write down any change's in your child,, even the slightest changes,(those slight changes are the ones that sneak up on you).
I was told a few years back "KNOWLEDGE IS POWER", and oh how true that is !!!This disease is so COMPLEX, I don't know if in a life time we will understand everything,but resrching and getting all the imfo you can get will help sooner or later, I promise.

We will be here to help always, and God Bless

 

[MaksNana]

Amy, You have the right to be angry at this 'stupid disease'.I know your daughter went in the hospital back in Feb, I hope she is doing well.I was wondering when your kids get a test done , do you ask for a copy of the results? The reason I ask is because when you have the results in your hands you can pick it up a year later and understand something that you thought a year ago was a forein language...I know you said that your daughter has the double mutation M470V,and was told these were considered 'non disease causing'. I could be wrong and not an expert at this,,,but I thought still to this day that they do not know the effects of the role genes play on a person.Even if two kids in the same home have 2Df508,(which that has been the most studyed one)the kids could and would have different symtoms... They may not have enough reserch done on your childs mutations yet.
I think chrissyd has a good idea about keeping a notebook.But, don't use it for just asking the doctors questions,,, use it to write down any change's in your child,, even the slightest changes,(those slight changes are the ones that sneak up on you).
I was told a few years back "KNOWLEDGE IS POWER", and oh how true that is !!!This disease is so COMPLEX, I don't know if in a life time we will understand everything,but resrching and getting all the imfo you can get will help sooner or later, I promise.

We will be here to help always, and God Bless

 

[MaksNana]

Amy, You have the right to be angry at this 'stupid disease'.I know your daughter went in the hospital back in Feb, I hope she is doing well.I was wondering when your kids get a test done , do you ask for a copy of the results? The reason I ask is because when you have the results in your hands you can pick it up a year later and understand something that you thought a year ago was a forein language...I know you said that your daughter has the double mutation M470V,and was told these were considered 'non disease causing'. I could be wrong and not an expert at this,,,but I thought still to this day that they do not know the effects of the role genes play on a person.Even if two kids in the same home have 2Df508,(which that has been the most studyed one)the kids could and would have different symtoms... They may not have enough reserch done on your childs mutations yet.
I think chrissyd has a good idea about keeping a notebook.But, don't use it for just asking the doctors questions,,, use it to write down any change's in your child,, even the slightest changes,(those slight changes are the ones that sneak up on you).
I was told a few years back "KNOWLEDGE IS POWER", and oh how true that is !!!This disease is so COMPLEX, I don't know if in a life time we will understand everything,but resrching and getting all the imfo you can get will help sooner or later, I promise.

We will be here to help always, and God Bless

 

[MaksNana]

Amy, You have the right to be angry at this 'stupid disease'.I know your daughter went in the hospital back in Feb, I hope she is doing well.I was wondering when your kids get a test done , do you ask for a copy of the results? The reason I ask is because when you have the results in your hands you can pick it up a year later and understand something that you thought a year ago was a forein language...I know you said that your daughter has the double mutation M470V,and was told these were considered 'non disease causing'. I could be wrong and not an expert at this,,,but I thought still to this day that they do not know the effects of the role genes play on a person.Even if two kids in the same home have 2Df508,(which that has been the most studyed one)the kids could and would have different symtoms... They may not have enough reserch done on your childs mutations yet.
<br />I think chrissyd has a good idea about keeping a notebook.But, don't use it for just asking the doctors questions,,, use it to write down any change's in your child,, even the slightest changes,(those slight changes are the ones that sneak up on you).
<br />I was told a few years back "KNOWLEDGE IS POWER", and oh how true that is !!!This disease is so COMPLEX, I don't know if in a life time we will understand everything,but resrching and getting all the imfo you can get will help sooner or later, I promise.
<br />
<br />We will be here to help always, and God Bless