holmfamily1992
New member
Hey there everyone,
We got back home around 3 this afternoon. It was a long trip thats for sure.
First, the last time I spoke with our social worker at our clinic, she told me that she had spoke to the manager at the hospitality house and he said he would move in 4 roll away beds for all of us to sleep on. (concidering the floors are cement) We arived around 9:00pm and the receptionist proceeded to tell me that the manager has no idea what he was talking about. They couldnt put 4 extra beds in there so they brought in 2. Now that left 3 of my children with no beds.
8:00am: Sweat test started (all 7 children this time)
11:00am: finally got them all done and back to the room for lunch
12:00pm: Meeting with our CF Doctor and treatment discussion for both kids.
1:30pm: Finally saw a Doctor
She then proceeded to apologize for our test results. Every single one came back Negative. Even the 2 that were Postive to begin with. And not just a little postive but positive. Enough to begin treatment without the genetic results.
Oh, by the way Jen, the new doctor is very percise. She is also very nice.
So about 2:00 the fire alarm went off in the building and we all had to go outside. NO FIRE THANK GOODNESS!! But I didnt get see our actual Doctor till almost 3:00. I asked him how the sweat test ended being negative. He proceeded to tell me that normally once your positive you are always positive and the same with negative. I do remember reading this in our CF book and all the other resources I got my hands on. So how is this possible?? He told me that it could have been something to do with their Hydration that day. But when I think back on the day before, they drank so much water it was pathetic. The hospitality house we stayed in had a cool ice and water machine, so of course they used it all night long.
Both Doctors told us that our situation was very weird and ordered Chest Xrays for all the kids. And also the full panel genetic testing.
So this morning I took my 3 children into the lab for their blood work and the lab tech asked me why we werent doing sweat test again. He said when a test goes from positive to a negative a third test is normally done. He said something went must have went wrong.
So my question is, Is there anyone our there that had a false positive or a false negative? And if the sweat test is suppose to be so accurate how does this kind of thing happen?? I have been told that nothing can alter the results of a sweat test. That is why its concidered so accurate.
All our blood work was sent to Mayo this time. Im not sure why they switched from Ambry. Now its just another 4 week waiting game.
At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations?? I guess Im just searching for answers. Why cant this disease be cut and dry??
I am calling Mayo tomorrow and asking them to send me the results as soon as they are ready. It took our clinic 5 months after they received the results to contact me with Dylans results. At least if I have them I can call everyday to find out what they want to do. I have to, I cant go though what I did with Dylan.
So what do all of you think?? I need input here. Does this happen a lot??
Heavy hearted once again, but I am VERY EXCITED about something and I want to share it with all of you.
In this whole proccess with Dylan, I realized that people in my area are not very educated about CF. SO, Doug and I started brain storming on what we can do to change that. We contacted the Foundation and they are willing to send a couple of people up here to do a conference and open it to all that are interested. Also, I signed up to be a team leader for the Great STrides walk in Big Rapids,MI on the 21st of September. We are hosting the very first 3 on 3 basketball tourmament set for Labor Day weekend. Our Superintendent is letting us use the school gyms for free and is willing to help out with whatever we need. Also, 2 news papers are interviewing us tomorrow and they are going to run our story!!!!! That will get the word out! We want to raise around $5000 to take with us to the Great Strides walk. Crazy I know but we can do it. I know we can.
Sorry so long, I have to go to bed now.
Hope to hear from everyone,
Tina
We got back home around 3 this afternoon. It was a long trip thats for sure.
First, the last time I spoke with our social worker at our clinic, she told me that she had spoke to the manager at the hospitality house and he said he would move in 4 roll away beds for all of us to sleep on. (concidering the floors are cement) We arived around 9:00pm and the receptionist proceeded to tell me that the manager has no idea what he was talking about. They couldnt put 4 extra beds in there so they brought in 2. Now that left 3 of my children with no beds.
8:00am: Sweat test started (all 7 children this time)
11:00am: finally got them all done and back to the room for lunch
12:00pm: Meeting with our CF Doctor and treatment discussion for both kids.
1:30pm: Finally saw a Doctor
She then proceeded to apologize for our test results. Every single one came back Negative. Even the 2 that were Postive to begin with. And not just a little postive but positive. Enough to begin treatment without the genetic results.
Oh, by the way Jen, the new doctor is very percise. She is also very nice.
So about 2:00 the fire alarm went off in the building and we all had to go outside. NO FIRE THANK GOODNESS!! But I didnt get see our actual Doctor till almost 3:00. I asked him how the sweat test ended being negative. He proceeded to tell me that normally once your positive you are always positive and the same with negative. I do remember reading this in our CF book and all the other resources I got my hands on. So how is this possible?? He told me that it could have been something to do with their Hydration that day. But when I think back on the day before, they drank so much water it was pathetic. The hospitality house we stayed in had a cool ice and water machine, so of course they used it all night long.
Both Doctors told us that our situation was very weird and ordered Chest Xrays for all the kids. And also the full panel genetic testing.
So this morning I took my 3 children into the lab for their blood work and the lab tech asked me why we werent doing sweat test again. He said when a test goes from positive to a negative a third test is normally done. He said something went must have went wrong.
So my question is, Is there anyone our there that had a false positive or a false negative? And if the sweat test is suppose to be so accurate how does this kind of thing happen?? I have been told that nothing can alter the results of a sweat test. That is why its concidered so accurate.
All our blood work was sent to Mayo this time. Im not sure why they switched from Ambry. Now its just another 4 week waiting game.
At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations?? I guess Im just searching for answers. Why cant this disease be cut and dry??
I am calling Mayo tomorrow and asking them to send me the results as soon as they are ready. It took our clinic 5 months after they received the results to contact me with Dylans results. At least if I have them I can call everyday to find out what they want to do. I have to, I cant go though what I did with Dylan.
So what do all of you think?? I need input here. Does this happen a lot??
Heavy hearted once again, but I am VERY EXCITED about something and I want to share it with all of you.
In this whole proccess with Dylan, I realized that people in my area are not very educated about CF. SO, Doug and I started brain storming on what we can do to change that. We contacted the Foundation and they are willing to send a couple of people up here to do a conference and open it to all that are interested. Also, I signed up to be a team leader for the Great STrides walk in Big Rapids,MI on the 21st of September. We are hosting the very first 3 on 3 basketball tourmament set for Labor Day weekend. Our Superintendent is letting us use the school gyms for free and is willing to help out with whatever we need. Also, 2 news papers are interviewing us tomorrow and they are going to run our story!!!!! That will get the word out! We want to raise around $5000 to take with us to the Great Strides walk. Crazy I know but we can do it. I know we can.
Sorry so long, I have to go to bed now.
Hope to hear from everyone,
Tina