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fighting for help
- Thread starter McBaby
- Start date
We had the sweat test yesterday, and they pediatrician says normal. One score was 10.2 and the other 13.1. I'm not sure exactly what that means, my husband took her for the test itself and is the one who took the call about the results, so I didn't get to ask any questions myself.
Onto the next appointment to try and figure this thing out. Thank you all for the help!
Onto the next appointment to try and figure this thing out. Thank you all for the help!
We had the sweat test yesterday, and they pediatrician says normal. One score was 10.2 and the other 13.1. I'm not sure exactly what that means, my husband took her for the test itself and is the one who took the call about the results, so I didn't get to ask any questions myself.
Onto the next appointment to try and figure this thing out. Thank you all for the help!
Onto the next appointment to try and figure this thing out. Thank you all for the help!
Was the sweat test done at an accredited cf center? If not, it might not be accurate. So now that you have a negative sweat does that convince your doctor to do a full genetic sequencing since the it did not conclude that she has cf? The genetic sequencing will help you 'close the book' once and for all on whether or not it is cf...then you can move on to the next thing. Don't stop until you have answers!
By the way, I find it strange that they are going to put tubes in the tear ducts. Do you have a link to research that this is the best way of handling it? My son was born in 2007 and had one blocked. We were told to massage it and that he would outgrow it...which he did.
By the way, I find it strange that they are going to put tubes in the tear ducts. Do you have a link to research that this is the best way of handling it? My son was born in 2007 and had one blocked. We were told to massage it and that he would outgrow it...which he did.
Was the sweat test done at an accredited cf center? If not, it might not be accurate. So now that you have a negative sweat does that convince your doctor to do a full genetic sequencing since the it did not conclude that she has cf? The genetic sequencing will help you 'close the book' once and for all on whether or not it is cf...then you can move on to the next thing. Don't stop until you have answers!
By the way, I find it strange that they are going to put tubes in the tear ducts. Do you have a link to research that this is the best way of handling it? My son was born in 2007 and had one blocked. We were told to massage it and that he would outgrow it...which he did.
By the way, I find it strange that they are going to put tubes in the tear ducts. Do you have a link to research that this is the best way of handling it? My son was born in 2007 and had one blocked. We were told to massage it and that he would outgrow it...which he did.
It was at the CF center. I've had some conversation with the dr about the test, and we're going to wait to see what the pulmonologist says before doing genetic testing. Apparently our insurance is tricky as well and when I contacted them, they won't cover the genetic test without "due diligence" in ruling out other things.
As for the tear ducts, hers are "dramatically" blocked. We've been doing the massaging treatments multiple times a day since birth. They are bothersome to her, she gets crust forming all day long, every day, despite the use of ointments and eye drops. In the mornings after a night's sleep, you can't see her eyelashes even, there is so much crust formed, it looks like a really bad case of pink eye, except her eyes aren't pink or swollen. The crust is bothersome to her, she's always rubbing her eyes, and "goop" gets smeared across her face from it. There's thoughts with the trouble with her ears that there's more to the whole sinus situation with the tear ducts, etc. etc. etc. I feel overloaded with information at this point. The pediatrician said often, they just "scope" the tear ducts but prepared us that since hers is a bit more extreme with how much she's producing, that she may need the tubing procedure. We have an appt with the specialist to determine that further. They did tell us she would grow out of it, but that's not appearing to happen. Here's the Mayo's article on it:
http://www.mayoclinic.com/health/blocked-tear-duct/DS01096/DSECTION=treatments-and-drugs
As for the tear ducts, hers are "dramatically" blocked. We've been doing the massaging treatments multiple times a day since birth. They are bothersome to her, she gets crust forming all day long, every day, despite the use of ointments and eye drops. In the mornings after a night's sleep, you can't see her eyelashes even, there is so much crust formed, it looks like a really bad case of pink eye, except her eyes aren't pink or swollen. The crust is bothersome to her, she's always rubbing her eyes, and "goop" gets smeared across her face from it. There's thoughts with the trouble with her ears that there's more to the whole sinus situation with the tear ducts, etc. etc. etc. I feel overloaded with information at this point. The pediatrician said often, they just "scope" the tear ducts but prepared us that since hers is a bit more extreme with how much she's producing, that she may need the tubing procedure. We have an appt with the specialist to determine that further. They did tell us she would grow out of it, but that's not appearing to happen. Here's the Mayo's article on it:
http://www.mayoclinic.com/health/blocked-tear-duct/DS01096/DSECTION=treatments-and-drugs
It was at the CF center. I've had some conversation with the dr about the test, and we're going to wait to see what the pulmonologist says before doing genetic testing. Apparently our insurance is tricky as well and when I contacted them, they won't cover the genetic test without "due diligence" in ruling out other things.
As for the tear ducts, hers are "dramatically" blocked. We've been doing the massaging treatments multiple times a day since birth. They are bothersome to her, she gets crust forming all day long, every day, despite the use of ointments and eye drops. In the mornings after a night's sleep, you can't see her eyelashes even, there is so much crust formed, it looks like a really bad case of pink eye, except her eyes aren't pink or swollen. The crust is bothersome to her, she's always rubbing her eyes, and "goop" gets smeared across her face from it. There's thoughts with the trouble with her ears that there's more to the whole sinus situation with the tear ducts, etc. etc. etc. I feel overloaded with information at this point. The pediatrician said often, they just "scope" the tear ducts but prepared us that since hers is a bit more extreme with how much she's producing, that she may need the tubing procedure. We have an appt with the specialist to determine that further. They did tell us she would grow out of it, but that's not appearing to happen. Here's the Mayo's article on it:
http://www.mayoclinic.com/health/blocked-tear-duct/DS01096/DSECTION=treatments-and-drugs
As for the tear ducts, hers are "dramatically" blocked. We've been doing the massaging treatments multiple times a day since birth. They are bothersome to her, she gets crust forming all day long, every day, despite the use of ointments and eye drops. In the mornings after a night's sleep, you can't see her eyelashes even, there is so much crust formed, it looks like a really bad case of pink eye, except her eyes aren't pink or swollen. The crust is bothersome to her, she's always rubbing her eyes, and "goop" gets smeared across her face from it. There's thoughts with the trouble with her ears that there's more to the whole sinus situation with the tear ducts, etc. etc. etc. I feel overloaded with information at this point. The pediatrician said often, they just "scope" the tear ducts but prepared us that since hers is a bit more extreme with how much she's producing, that she may need the tubing procedure. We have an appt with the specialist to determine that further. They did tell us she would grow out of it, but that's not appearing to happen. Here's the Mayo's article on it:
http://www.mayoclinic.com/health/blocked-tear-duct/DS01096/DSECTION=treatments-and-drugs
I thought I would provide a quick update for those who've helped and listened. CF is negative. Today, she will be undergoing surgery (ear tubes and adnoids removed, eye surgery in a few weeks) and while under, they are doing a lung biopsy as they now believe she may have Primary Ciliary Dyskinesia which presents similarly to CF.
I thought I would provide a quick update for those who've helped and listened. CF is negative. Today, she will be undergoing surgery (ear tubes and adnoids removed, eye surgery in a few weeks) and while under, they are doing a lung biopsy as they now believe she may have Primary Ciliary Dyskinesia which presents similarly to CF.