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5 out 8 children have now been tested
- Thread starter holmfamily1992
- Start date
Oh my! I would never have expected that result either. Are you and your husband going to be tested as well? If one of you actually has 2 CF mutations that would increase the odds of your children having it. Just a thought...and probably not one that you really want to deal with right now. But the thought crossed my mind and I felt I should mention it.
It must be so overwhelming, my heart aches for you all.
It must be so overwhelming, my heart aches for you all.
Oh my! I would never have expected that result either. Are you and your husband going to be tested as well? If one of you actually has 2 CF mutations that would increase the odds of your children having it. Just a thought...and probably not one that you really want to deal with right now. But the thought crossed my mind and I felt I should mention it.
It must be so overwhelming, my heart aches for you all.
It must be so overwhelming, my heart aches for you all.
Oh my! I would never have expected that result either. Are you and your husband going to be tested as well? If one of you actually has 2 CF mutations that would increase the odds of your children having it. Just a thought...and probably not one that you really want to deal with right now. But the thought crossed my mind and I felt I should mention it.
It must be so overwhelming, my heart aches for you all.
It must be so overwhelming, my heart aches for you all.
Oh my! I would never have expected that result either. Are you and your husband going to be tested as well? If one of you actually has 2 CF mutations that would increase the odds of your children having it. Just a thought...and probably not one that you really want to deal with right now. But the thought crossed my mind and I felt I should mention it.
It must be so overwhelming, my heart aches for you all.
It must be so overwhelming, my heart aches for you all.
Oh my! I would never have expected that result either. Are you and your husband going to be tested as well? If one of you actually has 2 CF mutations that would increase the odds of your children having it. Just a thought...and probably not one that you really want to deal with right now. But the thought crossed my mind and I felt I should mention it.
<br />
<br />It must be so overwhelming, my heart aches for you all.
<br />
<br />It must be so overwhelming, my heart aches for you all.
holmfamily1992
New member
Thanks to all for the hugs and thoughts.
I will try and answer all your questions so if I leave any out Im sorry.
The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
Thank you again,
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
I will try and answer all your questions so if I leave any out Im sorry.
The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
Thank you again,
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
holmfamily1992
New member
Thanks to all for the hugs and thoughts.
I will try and answer all your questions so if I leave any out Im sorry.
The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
Thank you again,
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
I will try and answer all your questions so if I leave any out Im sorry.
The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
Thank you again,
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
holmfamily1992
New member
Thanks to all for the hugs and thoughts.
I will try and answer all your questions so if I leave any out Im sorry.
The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
Thank you again,
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
I will try and answer all your questions so if I leave any out Im sorry.
The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
Thank you again,
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
holmfamily1992
New member
Thanks to all for the hugs and thoughts.
I will try and answer all your questions so if I leave any out Im sorry.
The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
Thank you again,
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
I will try and answer all your questions so if I leave any out Im sorry.
The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
Thank you again,
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
holmfamily1992
New member
Thanks to all for the hugs and thoughts.
<br />
<br />I will try and answer all your questions so if I leave any out Im sorry.
<br />
<br />The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
<br />
<br />I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
<br />
<br />They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
<br />
<br />Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
<br />We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
<br />
<br />My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
<br />
<br />Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
<br />
<br />Thank you again,
<br />
<br />Tina
<br />
<br /><img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
<br />
<br />I will try and answer all your questions so if I leave any out Im sorry.
<br />
<br />The only mutation that they found in our one son that has had the genetic testing is R117H. And I carry that mutation. We just recently found out that on my husbands side, Delta 508 is present. When his cousin was getting ready to try for a baby, both of them were tested for everything. That is where we found out about the Delta 508.
<br />
<br />I spoke to the social worker today. Our clinic is paying for our lodging next week for 2 days. She is working on helping us eat while we are down there.
<br />
<br />They tested him for pancreatic insufficientcy and he was just normal. No enzymes yet. He just has a very small stomach and cant eat like the rest of us. But he does eat. I am going to question the doctor next week about other causes of his no weight gain. But for now, we can give him all the fun things to eat that he wants.
<br />
<br />Yup, so far 3 children have CF. What scares me is that one of my sons that is a positive is 20 years old, 6'3"and weighs 200 pounds. We just scratch our heads on that one.
<br />We also have 2 boarderline. Dylan was boarderline also. That is why they need to test us.
<br />
<br />My husband and I were tested when Dylans genetic results came back. I think that is why we are so confused about this whole mutation thing. Everyone keeps telling me that normally 2 mutations have to be present but in Dylans case they have only found one. As for the other kids, their results will show us if the Delta 508 will be present. I know that I carry he R117H but the genetic testing they did on me was only for that specific mutation. They did not run a full panel on either of us. I am thinking they maybe should have.
<br />
<br />Its really all starting to hit us. I am just mentaly wore out. I have made so many phone calls and talked to so many people that my head is spinning. I think about all the nebulizers and medicine and hours of treatments ahead of us and it tires me out just looking down the road. Could it be possible for all my kids to have this stupid disease?? I know the answer to that one and Im not even going there right now. I told my husband, lets just get through next week and we will go from there.
<br />
<br />Thank you again,
<br />
<br />Tina
<br />
<br /><img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">