foreverworshiphim
New member
My daughter had an appt with an ENT today. Her symptoms have been chronic sinus infections with a horrible cough that we cannot get rid of. She went through 4 rounds of different antibiotic since Dec 2009 and have had no luck. Her CT scan of sinuses looked horrible I was told today. She has asthma and until last Nov she battled with reflux.(she had a fundoplication for the reflux) During her appt today the doc asked me if anyone had ever mention CF to me yet. So of course I was a bit thrown back and told him no. He left it alone until I asked again and he said he did not see any polyps during her exam ( put the tubing in through her nasal cavity.) so that was a good thing. I asked him if that ruled the CF out and said no. He said he would not chase it right now but that it was something to think about and have concern. So I left in shock and there is no way I can just let this go and wonder if something is wrong. He is wanting to do surgeries on her sinuses. She had her tonsils and adnoids out in Nov '08 and ended up in the PICU for a week and almost died. She became septic. And maybe this is too much to share but I lost my husband in April of 2008 so I am very cautious with my kids now. We have been through a ton so to just sit back and go with the wait and see approach really scares me.
Should I be this worried and if so what would you suggest the next step should be? We live 5hrs from the nearest certified CF clinic.
Any help is greatly appreciated!
Thank you
Amanda
So we got the first go round of lab work back but they only tested for the 32 most common mutations. It was sent to a lab in Salt Lake City, UT by the name of ARUP, so I am hoping it was a lab that knew what they were doing. I don't know if I should feel relieved or not from everything I have read. Her pulmo doc ordered a sweat test when we head to Denver at the beginning of May ( hoping to get that moved up ) so hopefully we can get some more solid answers. Her doc tried to tell me that if these 32 come back negative then there is only a 5% chance that she would would have any mutations. Does that sound correct? I love her pulmo doc but I am beginning to wonder if she truly knows all of the correct info....or maybe I am not up to speed?? I just know if my daughter does indeed have CF I want to know so I can be doing the right things for her.
So more waiting I guess...<img src="i/expressions/face-icon-small-sad.gif" border="0">
More questions!! I am going to request the full panel be done by Ambry but I need to know if the CF certified clinic has to go through all of the insurance process first? I am asking because since we live far away I don't want to get there and then it not be able to be done if everything was not in place. How do the CF clinics usually react in general when you request to use Ambry specifically? Since it is done through blood work do you still suggest having it done at the CF clinic or can it be sent by any lab?
My daughter has started something else new. She has been complaining for quite some time about the feeling of snot and boogers ( sorry...that is how she describes it lol ) being in her throat. This past week she has been telling me that it is all in her mouth. It is pretty nasty....white and looks like mucous. Does that sound familiar to anyone?
Also I think I am going to by pass the sweat test due to the fact she never sweats when she gets really hot ( other than at night ). She gets really red in her face and dehydrated really quickly. So would that make the sweat test hard to get the correct results? She has also been really fatigued lately after gymnastics. More than normal.....
I know I am flooding the questions in but trying to become as informed as I can! Thank you guys for your wisdom!
Should I be this worried and if so what would you suggest the next step should be? We live 5hrs from the nearest certified CF clinic.
Any help is greatly appreciated!
Thank you
Amanda
So we got the first go round of lab work back but they only tested for the 32 most common mutations. It was sent to a lab in Salt Lake City, UT by the name of ARUP, so I am hoping it was a lab that knew what they were doing. I don't know if I should feel relieved or not from everything I have read. Her pulmo doc ordered a sweat test when we head to Denver at the beginning of May ( hoping to get that moved up ) so hopefully we can get some more solid answers. Her doc tried to tell me that if these 32 come back negative then there is only a 5% chance that she would would have any mutations. Does that sound correct? I love her pulmo doc but I am beginning to wonder if she truly knows all of the correct info....or maybe I am not up to speed?? I just know if my daughter does indeed have CF I want to know so I can be doing the right things for her.
So more waiting I guess...<img src="i/expressions/face-icon-small-sad.gif" border="0">
More questions!! I am going to request the full panel be done by Ambry but I need to know if the CF certified clinic has to go through all of the insurance process first? I am asking because since we live far away I don't want to get there and then it not be able to be done if everything was not in place. How do the CF clinics usually react in general when you request to use Ambry specifically? Since it is done through blood work do you still suggest having it done at the CF clinic or can it be sent by any lab?
My daughter has started something else new. She has been complaining for quite some time about the feeling of snot and boogers ( sorry...that is how she describes it lol ) being in her throat. This past week she has been telling me that it is all in her mouth. It is pretty nasty....white and looks like mucous. Does that sound familiar to anyone?
Also I think I am going to by pass the sweat test due to the fact she never sweats when she gets really hot ( other than at night ). She gets really red in her face and dehydrated really quickly. So would that make the sweat test hard to get the correct results? She has also been really fatigued lately after gymnastics. More than normal.....
I know I am flooding the questions in but trying to become as informed as I can! Thank you guys for your wisdom!