We are still sitting in the grey zone for sweat tests. My son who is now 10 years old was diagnosed with CF in 2003 on the veidence of 3 positive sweat tests. He was then set up for daily treatments and medications. My husband and I had never heard of CF before and we were so scared.
I remember walking intot he doctors office and receiving his diagnosis that my little boy had CF and would die at a young age, I do not remember how I even got home from that appointment, it was all too surreal. After the initial shock, we started doing everything we could to make sure that my son thrived. Just want to mention that my son was completely healthy up until me took him into the hospital with pnuemonia. So we started living a completely different life, with daily treatments and enzymes in his food. We even put him in a CF calendar.
After a year of daily treatments and monthly appointments we were told to stop treatment as they noticed that there was something missing in his bloodwork to support CF, or maybe the most comon genes of CF. We were than sent to Sick kids in Toronto, ontario where he had to do bloodwork and have more sweat tests done. At that point they ruled out the most common genes of CF and he was then found to be in the grey zone area, but the doctor still said the numbers were higher than he would like.
We came back to London, Ontario and were kind of just left with ???, as no one from the CF clinic contacted us to discuss the results of what happened in Toronto, Ontario.
We then contacted the physician that gave us the initial diagnosis and he just sort of said nope he's fine. Obviously we were upset and confused, but also felt relieved that possibly it was just a mistake.
Well we continued on with our life as normal, thinking things are fine and our son was just caught in a mixed up situation where the sweat tests weren't done properly.
Always had the CF in the back of my mind though as my son ended up being behind with his learning and speak and his fine motor and gross motor skills weren't up to par after the year of treatments.
SO in 2011 I contacted the CF clinic in London again to have him sweat tested again, just to have it completely ruled out, so off we went and they had mentioned that my son should have been sweat tested at least once a year after 2003, but no one had contacted me.
Well the result now of the last sweat test was that my son is still in the greay zone of the sweat test results.
I am so frustrated as I am not sure exactly what that means.
I remember walking intot he doctors office and receiving his diagnosis that my little boy had CF and would die at a young age, I do not remember how I even got home from that appointment, it was all too surreal. After the initial shock, we started doing everything we could to make sure that my son thrived. Just want to mention that my son was completely healthy up until me took him into the hospital with pnuemonia. So we started living a completely different life, with daily treatments and enzymes in his food. We even put him in a CF calendar.
After a year of daily treatments and monthly appointments we were told to stop treatment as they noticed that there was something missing in his bloodwork to support CF, or maybe the most comon genes of CF. We were than sent to Sick kids in Toronto, ontario where he had to do bloodwork and have more sweat tests done. At that point they ruled out the most common genes of CF and he was then found to be in the grey zone area, but the doctor still said the numbers were higher than he would like.
We came back to London, Ontario and were kind of just left with ???, as no one from the CF clinic contacted us to discuss the results of what happened in Toronto, Ontario.
We then contacted the physician that gave us the initial diagnosis and he just sort of said nope he's fine. Obviously we were upset and confused, but also felt relieved that possibly it was just a mistake.
Well we continued on with our life as normal, thinking things are fine and our son was just caught in a mixed up situation where the sweat tests weren't done properly.
Always had the CF in the back of my mind though as my son ended up being behind with his learning and speak and his fine motor and gross motor skills weren't up to par after the year of treatments.
SO in 2011 I contacted the CF clinic in London again to have him sweat tested again, just to have it completely ruled out, so off we went and they had mentioned that my son should have been sweat tested at least once a year after 2003, but no one had contacted me.
Well the result now of the last sweat test was that my son is still in the greay zone of the sweat test results.
I am so frustrated as I am not sure exactly what that means.