I agree that maybe you could get an order and take it to a LabCorp or something like that. Not to frighten you, but I'm not sure why your dr would say that is not typical. Failure to thrive (not gaining enough weight) is often the only sign parents see. There has to be a reason for th epancreatic insufficiency. Search this website for Ambry Genetics. They have a forum going. I'm sure they can help. Good luck to you!
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I agree that maybe you could get an order and take it to a LabCorp or something like that. Not to frighten you, but I'm not sure why your dr would say that is not typical. Failure to thrive (not gaining enough weight) is often the only sign parents see. There has to be a reason for th epancreatic insufficiency. Search this website for Ambry Genetics. They have a forum going. I'm sure they can help. Good luck to you!
I agree that maybe you could get an order and take it to a LabCorp or something like that. Not to frighten you, but I'm not sure why your dr would say that is not typical. Failure to thrive (not gaining enough weight) is often the only sign parents see. There has to be a reason for th epancreatic insufficiency. Search this website for Ambry Genetics. They have a forum going. I'm sure they can help. Good luck to you!
I agree that maybe you could get an order and take it to a LabCorp or something like that. Not to frighten you, but I'm not sure why your dr would say that is not typical. Failure to thrive (not gaining enough weight) is often the only sign parents see. There has to be a reason for th epancreatic insufficiency. Search this website for Ambry Genetics. They have a forum going. I'm sure they can help. Good luck to you!
I agree that maybe you could get an order and take it to a LabCorp or something like that. Not to frighten you, but I'm not sure why your dr would say that is not typical. Failure to thrive (not gaining enough weight) is often the only sign parents see. There has to be a reason for th epancreatic insufficiency. Search this website for Ambry Genetics. They have a forum going. I'm sure they can help. Good luck to you!
<div class="FTQUOTE"><begin quote>his GI problems could be caused by a minor mutation.</end quote></div>
I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.
I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.
<div class="FTQUOTE"><begin quote>his GI problems could be caused by a minor mutation.</end quote></div>
I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.
I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.
<div class="FTQUOTE"><begin quote>his GI problems could be caused by a minor mutation.</end quote></div>
I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.
I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.
<div class="FTQUOTE"><begin quote>his GI problems could be caused by a minor mutation.</end quote>
I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.
I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.
<div class="FTQUOTE"><begin quote>his GI problems could be caused by a minor mutation.</end quote>
<br />I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
<br />
<br />My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
<br />
<br />I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.
<br />I can't add anything to how to deal with military insurance (no experience there) but feel compelled to add that the df508 mutation is associated with pancreatic insufficiency as well. Many- actually, almost all- kids with 2 df508 mutations have pancreatic insufficiency, so you certainly do not even need a different mutation added to the mix to have this symptom. Respiratory symptoms can take years to present no matter what mutations you have.
<br />
<br />My daughter presented with failure to thrive as well. Being able to dx while it is still minor is so important. She was severely affected by the time she was dx'ed and we are having an enormous amount of difficulty getting the weight on her now- I wish so badly we were able to have done something years ago.
<br />
<br />I hope you are able to have the Ambry testing done- having his old dr order it would be ideal if the current one will not.