Newly diagnosed and stationed overseas!

armymom74

New member
My son (now 3 months) tested positive in his well baby check however we still do not know if he is a carrier or if he has CF. My frustration is that Im stationed overseas and do not have access to the medical care I would like. Everytime I have a question his Dr has to email a Dr in the states to get an answer which takes forever. My son had 2 sweat tests done in a german hospital which were inconclusive, they tested his stool and siad that his pancreas is fine. My concern is that he has had this congestion since he was born that is getting worse. On friday I finally got some nose drops for him but the Dr wouldn't do an xray to check his lungs because she said they sounded fine and he wasn't acting sick. Im worried that even if he only has a mild case of CF that this might be a symptom. Im wondering how sick he is going to have to get before they do something. Any advice from anyone?????
 

armymom74

New member
My son (now 3 months) tested positive in his well baby check however we still do not know if he is a carrier or if he has CF. My frustration is that Im stationed overseas and do not have access to the medical care I would like. Everytime I have a question his Dr has to email a Dr in the states to get an answer which takes forever. My son had 2 sweat tests done in a german hospital which were inconclusive, they tested his stool and siad that his pancreas is fine. My concern is that he has had this congestion since he was born that is getting worse. On friday I finally got some nose drops for him but the Dr wouldn't do an xray to check his lungs because she said they sounded fine and he wasn't acting sick. Im worried that even if he only has a mild case of CF that this might be a symptom. Im wondering how sick he is going to have to get before they do something. Any advice from anyone?????
 

armymom74

New member
My son (now 3 months) tested positive in his well baby check however we still do not know if he is a carrier or if he has CF. My frustration is that Im stationed overseas and do not have access to the medical care I would like. Everytime I have a question his Dr has to email a Dr in the states to get an answer which takes forever. My son had 2 sweat tests done in a german hospital which were inconclusive, they tested his stool and siad that his pancreas is fine. My concern is that he has had this congestion since he was born that is getting worse. On friday I finally got some nose drops for him but the Dr wouldn't do an xray to check his lungs because she said they sounded fine and he wasn't acting sick. Im worried that even if he only has a mild case of CF that this might be a symptom. Im wondering how sick he is going to have to get before they do something. Any advice from anyone?????
 

armymom74

New member
My son (now 3 months) tested positive in his well baby check however we still do not know if he is a carrier or if he has CF. My frustration is that Im stationed overseas and do not have access to the medical care I would like. Everytime I have a question his Dr has to email a Dr in the states to get an answer which takes forever. My son had 2 sweat tests done in a german hospital which were inconclusive, they tested his stool and siad that his pancreas is fine. My concern is that he has had this congestion since he was born that is getting worse. On friday I finally got some nose drops for him but the Dr wouldn't do an xray to check his lungs because she said they sounded fine and he wasn't acting sick. Im worried that even if he only has a mild case of CF that this might be a symptom. Im wondering how sick he is going to have to get before they do something. Any advice from anyone?????
 

armymom74

New member
My son (now 3 months) tested positive in his well baby check however we still do not know if he is a carrier or if he has CF. My frustration is that Im stationed overseas and do not have access to the medical care I would like. Everytime I have a question his Dr has to email a Dr in the states to get an answer which takes forever. My son had 2 sweat tests done in a german hospital which were inconclusive, they tested his stool and siad that his pancreas is fine. My concern is that he has had this congestion since he was born that is getting worse. On friday I finally got some nose drops for him but the Dr wouldn't do an xray to check his lungs because she said they sounded fine and he wasn't acting sick. Im worried that even if he only has a mild case of CF that this might be a symptom. Im wondering how sick he is going to have to get before they do something. Any advice from anyone?????
 

Alisonsmom

New member
Armymom74-

I can completely relate to some of your frustrations. My daughter, Alison, was informally diagnosed with CF while we were still living in Germany last fall (we have since moved back to the States and she has been formally diagnosed). We tried to have a sweat test done at the local German hospital but Alison was just too small to get a conclusive answer.

I have a couple of pieces of advice for you that you can obviously take or leave (I tend to be a little bossy, sorry!!). TRUST YOUR INSTINCTS!! If you feel like something is wrong, then speak up about it. Make a pest of yourself until you get an answer that you're comfortable with. If you don't feel like you're getting the care that you need for your son, I would suggest looking into transferring your care to Landstuhl (if this is a feasible option for you). We only go to the doctor on post for my daughter's routine care and we go to a CF Center 2 hours away for all care related to her CF. About the sweat test... It's difficult to get a conclusive result until the baby is a little older so I wouldn't stress too much about that for another couple of months.

I know that when Alison was diagnosed, the doctor told us that if we didn't already have orders, then she would recommend getting us back to the States. If this is an option for you, you might want to contact the Exceptional Family Member Program (EFMP) at your post and see if they can help you with that. They may also be able to put you in contact with people in your area who are going through the same thing.

I hope that all of my rambling has helped you some!

Susan
 

Alisonsmom

New member
Armymom74-

I can completely relate to some of your frustrations. My daughter, Alison, was informally diagnosed with CF while we were still living in Germany last fall (we have since moved back to the States and she has been formally diagnosed). We tried to have a sweat test done at the local German hospital but Alison was just too small to get a conclusive answer.

I have a couple of pieces of advice for you that you can obviously take or leave (I tend to be a little bossy, sorry!!). TRUST YOUR INSTINCTS!! If you feel like something is wrong, then speak up about it. Make a pest of yourself until you get an answer that you're comfortable with. If you don't feel like you're getting the care that you need for your son, I would suggest looking into transferring your care to Landstuhl (if this is a feasible option for you). We only go to the doctor on post for my daughter's routine care and we go to a CF Center 2 hours away for all care related to her CF. About the sweat test... It's difficult to get a conclusive result until the baby is a little older so I wouldn't stress too much about that for another couple of months.

I know that when Alison was diagnosed, the doctor told us that if we didn't already have orders, then she would recommend getting us back to the States. If this is an option for you, you might want to contact the Exceptional Family Member Program (EFMP) at your post and see if they can help you with that. They may also be able to put you in contact with people in your area who are going through the same thing.

I hope that all of my rambling has helped you some!

Susan
 

Alisonsmom

New member
Armymom74-

I can completely relate to some of your frustrations. My daughter, Alison, was informally diagnosed with CF while we were still living in Germany last fall (we have since moved back to the States and she has been formally diagnosed). We tried to have a sweat test done at the local German hospital but Alison was just too small to get a conclusive answer.

I have a couple of pieces of advice for you that you can obviously take or leave (I tend to be a little bossy, sorry!!). TRUST YOUR INSTINCTS!! If you feel like something is wrong, then speak up about it. Make a pest of yourself until you get an answer that you're comfortable with. If you don't feel like you're getting the care that you need for your son, I would suggest looking into transferring your care to Landstuhl (if this is a feasible option for you). We only go to the doctor on post for my daughter's routine care and we go to a CF Center 2 hours away for all care related to her CF. About the sweat test... It's difficult to get a conclusive result until the baby is a little older so I wouldn't stress too much about that for another couple of months.

I know that when Alison was diagnosed, the doctor told us that if we didn't already have orders, then she would recommend getting us back to the States. If this is an option for you, you might want to contact the Exceptional Family Member Program (EFMP) at your post and see if they can help you with that. They may also be able to put you in contact with people in your area who are going through the same thing.

I hope that all of my rambling has helped you some!

Susan
 

Alisonsmom

New member
Armymom74-

I can completely relate to some of your frustrations. My daughter, Alison, was informally diagnosed with CF while we were still living in Germany last fall (we have since moved back to the States and she has been formally diagnosed). We tried to have a sweat test done at the local German hospital but Alison was just too small to get a conclusive answer.

I have a couple of pieces of advice for you that you can obviously take or leave (I tend to be a little bossy, sorry!!). TRUST YOUR INSTINCTS!! If you feel like something is wrong, then speak up about it. Make a pest of yourself until you get an answer that you're comfortable with. If you don't feel like you're getting the care that you need for your son, I would suggest looking into transferring your care to Landstuhl (if this is a feasible option for you). We only go to the doctor on post for my daughter's routine care and we go to a CF Center 2 hours away for all care related to her CF. About the sweat test... It's difficult to get a conclusive result until the baby is a little older so I wouldn't stress too much about that for another couple of months.

I know that when Alison was diagnosed, the doctor told us that if we didn't already have orders, then she would recommend getting us back to the States. If this is an option for you, you might want to contact the Exceptional Family Member Program (EFMP) at your post and see if they can help you with that. They may also be able to put you in contact with people in your area who are going through the same thing.

I hope that all of my rambling has helped you some!

Susan
 

Alisonsmom

New member
Armymom74-
<br />
<br />I can completely relate to some of your frustrations. My daughter, Alison, was informally diagnosed with CF while we were still living in Germany last fall (we have since moved back to the States and she has been formally diagnosed). We tried to have a sweat test done at the local German hospital but Alison was just too small to get a conclusive answer.
<br />
<br />I have a couple of pieces of advice for you that you can obviously take or leave (I tend to be a little bossy, sorry!!). TRUST YOUR INSTINCTS!! If you feel like something is wrong, then speak up about it. Make a pest of yourself until you get an answer that you're comfortable with. If you don't feel like you're getting the care that you need for your son, I would suggest looking into transferring your care to Landstuhl (if this is a feasible option for you). We only go to the doctor on post for my daughter's routine care and we go to a CF Center 2 hours away for all care related to her CF. About the sweat test... It's difficult to get a conclusive result until the baby is a little older so I wouldn't stress too much about that for another couple of months.
<br />
<br />I know that when Alison was diagnosed, the doctor told us that if we didn't already have orders, then she would recommend getting us back to the States. If this is an option for you, you might want to contact the Exceptional Family Member Program (EFMP) at your post and see if they can help you with that. They may also be able to put you in contact with people in your area who are going through the same thing.
<br />
<br />I hope that all of my rambling has helped you some!
<br />
<br />Susan
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.

Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.

Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.

Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.

Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.
<br />
<br />Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.

Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.

Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.

Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.

Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 

armymom74

New member
I can't tell you how thankful I am that you responded. I am statined at heidelberg, not too far from Landstuhl but was told that there are no specialist in Europe that could help us. My son has already been classed an EFMP, his ped doc is also the EFMP doc. Her solution was that if he gets sick we can air evac him to the states to be seen, I work in air evac and know that people can get an air evac just for a consult but to be honest I would rather try for a reassignment. I emailed his doc last week asking if she would support that and she has not responded. I am kinda feeling like that because he is not showing symptoms that it is not being taken seriously which is driving me crazy. I think I am going to get in touch with the EFMP office today and find out what I would need for a compassionate reassignment for medical reasons. Im also going to try to shoot for Hawaii as Trippler is the only army hospital that is accredited by the CFF.
<br />
<br />Thanks again for responding, I finally feel like someone is listening to me <img src="i/expressions/face-icon-small-smile.gif" border="0"> How is your daughter doing?
 
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