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Scared
- Thread starter tizzy
- Start date
Oh Tizzy, your posts are breaking my heart. Take a deep breath and try to focus on this; worry consumes our moments when they could be filled with love, laughter and making memories. I know this is a very scary time for you, but worry won't make it come faster or change the outcomes. Have the genetic tests done and remember that if it is cf, the world won't end, just change for you. I believe God only gives us what we can handle and no more; he must have a lot of faith in you. I'm sorry about your husband and I'm sure that makes this situation seem worse. I will be keeping you in my thoughts and prayers. Please come back and let us know how things turn out. Best of luck!!
Jean, mother of Samantha 13 wcf.
Jean, mother of Samantha 13 wcf.
Oh Tizzy, your posts are breaking my heart. Take a deep breath and try to focus on this; worry consumes our moments when they could be filled with love, laughter and making memories. I know this is a very scary time for you, but worry won't make it come faster or change the outcomes. Have the genetic tests done and remember that if it is cf, the world won't end, just change for you. I believe God only gives us what we can handle and no more; he must have a lot of faith in you. I'm sorry about your husband and I'm sure that makes this situation seem worse. I will be keeping you in my thoughts and prayers. Please come back and let us know how things turn out. Best of luck!!
Jean, mother of Samantha 13 wcf.
Jean, mother of Samantha 13 wcf.
Oh Tizzy, your posts are breaking my heart. Take a deep breath and try to focus on this; worry consumes our moments when they could be filled with love, laughter and making memories. I know this is a very scary time for you, but worry won't make it come faster or change the outcomes. Have the genetic tests done and remember that if it is cf, the world won't end, just change for you. I believe God only gives us what we can handle and no more; he must have a lot of faith in you. I'm sorry about your husband and I'm sure that makes this situation seem worse. I will be keeping you in my thoughts and prayers. Please come back and let us know how things turn out. Best of luck!!
Jean, mother of Samantha 13 wcf.
Jean, mother of Samantha 13 wcf.
Sorry to hear you are freaking out -- what I have to say will probably not help much (probably isn't what you want to hear) but I figure information is always a good thing so here goes:
Please read the first entry on my blog page (link is in my signature line below) -- my kids have low sweat test numbers and very few "classic" CF symptoms, but genetic testing shows they do in fact have two CF genes. I give more details on the blog.
You are in the right place for the testing and follow-up. I have heard good things about that facility.
Best wishes and please keep us updated.
Please read the first entry on my blog page (link is in my signature line below) -- my kids have low sweat test numbers and very few "classic" CF symptoms, but genetic testing shows they do in fact have two CF genes. I give more details on the blog.
You are in the right place for the testing and follow-up. I have heard good things about that facility.
Best wishes and please keep us updated.
Sorry to hear you are freaking out -- what I have to say will probably not help much (probably isn't what you want to hear) but I figure information is always a good thing so here goes:
Please read the first entry on my blog page (link is in my signature line below) -- my kids have low sweat test numbers and very few "classic" CF symptoms, but genetic testing shows they do in fact have two CF genes. I give more details on the blog.
You are in the right place for the testing and follow-up. I have heard good things about that facility.
Best wishes and please keep us updated.
Please read the first entry on my blog page (link is in my signature line below) -- my kids have low sweat test numbers and very few "classic" CF symptoms, but genetic testing shows they do in fact have two CF genes. I give more details on the blog.
You are in the right place for the testing and follow-up. I have heard good things about that facility.
Best wishes and please keep us updated.
Sorry to hear you are freaking out -- what I have to say will probably not help much (probably isn't what you want to hear) but I figure information is always a good thing so here goes:
Please read the first entry on my blog page (link is in my signature line below) -- my kids have low sweat test numbers and very few "classic" CF symptoms, but genetic testing shows they do in fact have two CF genes. I give more details on the blog.
You are in the right place for the testing and follow-up. I have heard good things about that facility.
Best wishes and please keep us updated.
Please read the first entry on my blog page (link is in my signature line below) -- my kids have low sweat test numbers and very few "classic" CF symptoms, but genetic testing shows they do in fact have two CF genes. I give more details on the blog.
You are in the right place for the testing and follow-up. I have heard good things about that facility.
Best wishes and please keep us updated.
It has been 3 days now since my sons' 3rd sweat test came back.Can someone please tell me when does the crying stop. When can I eat again without wanting to be sick. I AM the strong one in the family. I AM the one that mom and dad and brother and son and husband go to!I keep it all together for everyone else. But I cannot breathe.I awaken in tears and have been going to bed early just to try to sleep and not think. I am OK in front of my son but I really can't even speak to anyone right now. I can't even tell my parents because I don't have the strength to handle their breakdowns. This is so not me and I just can't seem to do anything but cry. I'm not weak -I am just so scared.I could really use some advice. Can someone tell me how to get past this and do what comes next? Please! Thank you for any advice you can give.
It has been 3 days now since my sons' 3rd sweat test came back.Can someone please tell me when does the crying stop. When can I eat again without wanting to be sick. I AM the strong one in the family. I AM the one that mom and dad and brother and son and husband go to!I keep it all together for everyone else. But I cannot breathe.I awaken in tears and have been going to bed early just to try to sleep and not think. I am OK in front of my son but I really can't even speak to anyone right now. I can't even tell my parents because I don't have the strength to handle their breakdowns. This is so not me and I just can't seem to do anything but cry. I'm not weak -I am just so scared.I could really use some advice. Can someone tell me how to get past this and do what comes next? Please! Thank you for any advice you can give.
It has been 3 days now since my sons' 3rd sweat test came back.Can someone please tell me when does the crying stop. When can I eat again without wanting to be sick. I AM the strong one in the family. I AM the one that mom and dad and brother and son and husband go to!I keep it all together for everyone else. But I cannot breathe.I awaken in tears and have been going to bed early just to try to sleep and not think. I am OK in front of my son but I really can't even speak to anyone right now. I can't even tell my parents because I don't have the strength to handle their breakdowns. This is so not me and I just can't seem to do anything but cry. I'm not weak -I am just so scared.I could really use some advice. Can someone tell me how to get past this and do what comes next? Please! Thank you for any advice you can give.
Childressj
New member
I know this will not help, but I am going through the same thing, Trevor had the sweat tests done and his scores were 47 and 39 and pretty much the same after the second one. We got the amby tests done 2 weeks ago yesterday and I am still watiing for the results and let me tell you the waiting has been harder then anything. I have prayed alot these past couple of weeks. The only advice that I can give to you is pray and try to just live your normal live during this waiting period (although I know it is hard) If he does test positive you will need your strength to deal with it and if you have used all your strength now what are you going to have left? from what I have read on all these forums that I continue to read daily I have learned that if he does test positive then I know that he will get the treatment that he needs and he won't be in all this pain anymore. I know that GOD will take care of my son and you have to believe that too. Hope that some of this was helpful. JC
Childressj
New member
I know this will not help, but I am going through the same thing, Trevor had the sweat tests done and his scores were 47 and 39 and pretty much the same after the second one. We got the amby tests done 2 weeks ago yesterday and I am still watiing for the results and let me tell you the waiting has been harder then anything. I have prayed alot these past couple of weeks. The only advice that I can give to you is pray and try to just live your normal live during this waiting period (although I know it is hard) If he does test positive you will need your strength to deal with it and if you have used all your strength now what are you going to have left? from what I have read on all these forums that I continue to read daily I have learned that if he does test positive then I know that he will get the treatment that he needs and he won't be in all this pain anymore. I know that GOD will take care of my son and you have to believe that too. Hope that some of this was helpful. JC
Childressj
New member
I know this will not help, but I am going through the same thing, Trevor had the sweat tests done and his scores were 47 and 39 and pretty much the same after the second one. We got the amby tests done 2 weeks ago yesterday and I am still watiing for the results and let me tell you the waiting has been harder then anything. I have prayed alot these past couple of weeks. The only advice that I can give to you is pray and try to just live your normal live during this waiting period (although I know it is hard) If he does test positive you will need your strength to deal with it and if you have used all your strength now what are you going to have left? from what I have read on all these forums that I continue to read daily I have learned that if he does test positive then I know that he will get the treatment that he needs and he won't be in all this pain anymore. I know that GOD will take care of my son and you have to believe that too. Hope that some of this was helpful. JC
There isnt much that we can say. We have to work through our own feelings, but what I will say is IF things are positive for CF. The crying wont change that. It will ease some tension, but makes it difficult to move on with whatever routine is required. You might be faced with a situation that you cant change so you need to find the strength in evrey fiber of your being to push forward........
There isnt much that we can say. We have to work through our own feelings, but what I will say is IF things are positive for CF. The crying wont change that. It will ease some tension, but makes it difficult to move on with whatever routine is required. You might be faced with a situation that you cant change so you need to find the strength in evrey fiber of your being to push forward........
There isnt much that we can say. We have to work through our own feelings, but what I will say is IF things are positive for CF. The crying wont change that. It will ease some tension, but makes it difficult to move on with whatever routine is required. You might be faced with a situation that you cant change so you need to find the strength in evrey fiber of your being to push forward........
Was wondering if it makes a difference who does the genetic sscreening? The CF center sent my sons blood to Genzyme to be tested. They assured me they tested for all of the mutations that Ambry does.
The results should be back any day now. The waiting is excruciating!
Thanks for any help.
The results should be back any day now. The waiting is excruciating!
Thanks for any help.
Was wondering if it makes a difference who does the genetic sscreening? The CF center sent my sons blood to Genzyme to be tested. They assured me they tested for all of the mutations that Ambry does.
The results should be back any day now. The waiting is excruciating!
Thanks for any help.
The results should be back any day now. The waiting is excruciating!
Thanks for any help.
Was wondering if it makes a difference who does the genetic sscreening? The CF center sent my sons blood to Genzyme to be tested. They assured me they tested for all of the mutations that Ambry does.
The results should be back any day now. The waiting is excruciating!
Thanks for any help.
The results should be back any day now. The waiting is excruciating!
Thanks for any help.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tizzy</b></i>
Was wondering if it makes a difference who does the genetic sscreening? The CF center sent my sons blood to Genzyme to be tested. They assured me they tested for all of the mutations that Ambry does.
The results should be back any day now. The waiting is excruciating!
Thanks for any help.</end quote></div>
It DOES make a difference. It addition to testing for ALL the mutations there are other things related that could/would/should be tested for when trying to give accuracy. IF you have any real ?? on the difference I suggest your ask Steve from Ambry. On the FAMILY section there is a thread at the top that is for Ambry which allows you to ask ??. Steve is fantastic and will give more info!
Was wondering if it makes a difference who does the genetic sscreening? The CF center sent my sons blood to Genzyme to be tested. They assured me they tested for all of the mutations that Ambry does.
The results should be back any day now. The waiting is excruciating!
Thanks for any help.</end quote></div>
It DOES make a difference. It addition to testing for ALL the mutations there are other things related that could/would/should be tested for when trying to give accuracy. IF you have any real ?? on the difference I suggest your ask Steve from Ambry. On the FAMILY section there is a thread at the top that is for Ambry which allows you to ask ??. Steve is fantastic and will give more info!