We are worried about our son. Any insight??

juliemom25 · Mar 16, 2008

Hello!

I hope you don't mind me posting but my dh and I are worried about our son. He is 19 months old and has been home for 5 months. We adopted him from Guatemala.

I will try and make this brief. We have no history of the genetics of his birth mother or father. All standard testing has been done on him and to our knowledge he came to us healthy. He lived with a wonderful foster family while in Guatemala and they reported no unusual symptoms and his monthly dr.'s visits were always great.

We brought him home and slowly switched him from Guatemalan formula to whole. We noticed that his stools were very frequent and runny and thought it was a milk issue. He also broke out in hives twice. So we switched him to soy milk and did not see much of a difference with the stools, but no more hives (we are watching his dairy intake also). Ok, I will spare you all the details, but now we are seeing a GI specialits at Children's and he is watning to test our son for CF. He is being pretty persistant about it also, almost to the exclusion of testing him for food allergies which is what I thought we were going to him for.

Don't get me wrong I am all for testing our son for anything he deems necessary, but he just seems very focused on CF and that is concerning to us.

Here are the symptoms I reported to the specialist and that he has recorded. Our son has gained little to no weight in 5 months since he has been home. This is very unusual. Most kids plump up like crazy when they get home. He has spiked 3 to 4 high fevers since he has been home (103 to 104). They go up for 24 to 48 hours and then go back down. Frequent and runny stools. Very irritable at times (although is a sweetheart regardless). And, our specialist doesn't even know this yet, but our son just got over a pretty nasty run of "asthmatic broncitis." (per our family physician).

Our specialists has tried to do 2 sweat tests (with the electrodes) and neither test produced sweat. So now we are getting bloodwork done next Tuesday to test for CF.

Ds does not have salty tasting skin. Also, I wouldn't consider him overly phlemy. He has gotten a few coughs since he's been home, but so have my other kids.

Anyways, I would really appreciate any insight you may have. I definitely want to knwo asap if he has CF, but I just keep thinking, wouldn't he have some more symptoms if he had it.

Thanks!

Julie

juliemom25 · Mar 16, 2008

Hello!

I hope you don't mind me posting but my dh and I are worried about our son. He is 19 months old and has been home for 5 months. We adopted him from Guatemala.

I will try and make this brief. We have no history of the genetics of his birth mother or father. All standard testing has been done on him and to our knowledge he came to us healthy. He lived with a wonderful foster family while in Guatemala and they reported no unusual symptoms and his monthly dr.'s visits were always great.

We brought him home and slowly switched him from Guatemalan formula to whole. We noticed that his stools were very frequent and runny and thought it was a milk issue. He also broke out in hives twice. So we switched him to soy milk and did not see much of a difference with the stools, but no more hives (we are watching his dairy intake also). Ok, I will spare you all the details, but now we are seeing a GI specialits at Children's and he is watning to test our son for CF. He is being pretty persistant about it also, almost to the exclusion of testing him for food allergies which is what I thought we were going to him for.

Don't get me wrong I am all for testing our son for anything he deems necessary, but he just seems very focused on CF and that is concerning to us.

Here are the symptoms I reported to the specialist and that he has recorded. Our son has gained little to no weight in 5 months since he has been home. This is very unusual. Most kids plump up like crazy when they get home. He has spiked 3 to 4 high fevers since he has been home (103 to 104). They go up for 24 to 48 hours and then go back down. Frequent and runny stools. Very irritable at times (although is a sweetheart regardless). And, our specialist doesn't even know this yet, but our son just got over a pretty nasty run of "asthmatic broncitis." (per our family physician).

Our specialists has tried to do 2 sweat tests (with the electrodes) and neither test produced sweat. So now we are getting bloodwork done next Tuesday to test for CF.

Ds does not have salty tasting skin. Also, I wouldn't consider him overly phlemy. He has gotten a few coughs since he's been home, but so have my other kids.

Anyways, I would really appreciate any insight you may have. I definitely want to knwo asap if he has CF, but I just keep thinking, wouldn't he have some more symptoms if he had it.

Thanks!

Julie

juliemom25 · Mar 16, 2008

Hello!

I hope you don't mind me posting but my dh and I are worried about our son. He is 19 months old and has been home for 5 months. We adopted him from Guatemala.

I will try and make this brief. We have no history of the genetics of his birth mother or father. All standard testing has been done on him and to our knowledge he came to us healthy. He lived with a wonderful foster family while in Guatemala and they reported no unusual symptoms and his monthly dr.'s visits were always great.

We brought him home and slowly switched him from Guatemalan formula to whole. We noticed that his stools were very frequent and runny and thought it was a milk issue. He also broke out in hives twice. So we switched him to soy milk and did not see much of a difference with the stools, but no more hives (we are watching his dairy intake also). Ok, I will spare you all the details, but now we are seeing a GI specialits at Children's and he is watning to test our son for CF. He is being pretty persistant about it also, almost to the exclusion of testing him for food allergies which is what I thought we were going to him for.

Don't get me wrong I am all for testing our son for anything he deems necessary, but he just seems very focused on CF and that is concerning to us.

Here are the symptoms I reported to the specialist and that he has recorded. Our son has gained little to no weight in 5 months since he has been home. This is very unusual. Most kids plump up like crazy when they get home. He has spiked 3 to 4 high fevers since he has been home (103 to 104). They go up for 24 to 48 hours and then go back down. Frequent and runny stools. Very irritable at times (although is a sweetheart regardless). And, our specialist doesn't even know this yet, but our son just got over a pretty nasty run of "asthmatic broncitis." (per our family physician).

Our specialists has tried to do 2 sweat tests (with the electrodes) and neither test produced sweat. So now we are getting bloodwork done next Tuesday to test for CF.

Ds does not have salty tasting skin. Also, I wouldn't consider him overly phlemy. He has gotten a few coughs since he's been home, but so have my other kids.

Anyways, I would really appreciate any insight you may have. I definitely want to knwo asap if he has CF, but I just keep thinking, wouldn't he have some more symptoms if he had it.

Thanks!

Julie

juliemom25 · Mar 16, 2008

Hello!

I hope you don't mind me posting but my dh and I are worried about our son. He is 19 months old and has been home for 5 months. We adopted him from Guatemala.

I will try and make this brief. We have no history of the genetics of his birth mother or father. All standard testing has been done on him and to our knowledge he came to us healthy. He lived with a wonderful foster family while in Guatemala and they reported no unusual symptoms and his monthly dr.'s visits were always great.

We brought him home and slowly switched him from Guatemalan formula to whole. We noticed that his stools were very frequent and runny and thought it was a milk issue. He also broke out in hives twice. So we switched him to soy milk and did not see much of a difference with the stools, but no more hives (we are watching his dairy intake also). Ok, I will spare you all the details, but now we are seeing a GI specialits at Children's and he is watning to test our son for CF. He is being pretty persistant about it also, almost to the exclusion of testing him for food allergies which is what I thought we were going to him for.

Don't get me wrong I am all for testing our son for anything he deems necessary, but he just seems very focused on CF and that is concerning to us.

Here are the symptoms I reported to the specialist and that he has recorded. Our son has gained little to no weight in 5 months since he has been home. This is very unusual. Most kids plump up like crazy when they get home. He has spiked 3 to 4 high fevers since he has been home (103 to 104). They go up for 24 to 48 hours and then go back down. Frequent and runny stools. Very irritable at times (although is a sweetheart regardless). And, our specialist doesn't even know this yet, but our son just got over a pretty nasty run of "asthmatic broncitis." (per our family physician).

Our specialists has tried to do 2 sweat tests (with the electrodes) and neither test produced sweat. So now we are getting bloodwork done next Tuesday to test for CF.

Ds does not have salty tasting skin. Also, I wouldn't consider him overly phlemy. He has gotten a few coughs since he's been home, but so have my other kids.

Anyways, I would really appreciate any insight you may have. I definitely want to knwo asap if he has CF, but I just keep thinking, wouldn't he have some more symptoms if he had it.

Thanks!

Julie

juliemom25 · Mar 16, 2008

Hello!
 
 I hope you don't mind me posting but my dh and I are worried about our son. He is 19 months old and has been home for 5 months. We adopted him from Guatemala.
 
 I will try and make this brief. We have no history of the genetics of his birth mother or father. All standard testing has been done on him and to our knowledge he came to us healthy. He lived with a wonderful foster family while in Guatemala and they reported no unusual symptoms and his monthly dr.'s visits were always great.
 
 We brought him home and slowly switched him from Guatemalan formula to whole. We noticed that his stools were very frequent and runny and thought it was a milk issue. He also broke out in hives twice. So we switched him to soy milk and did not see much of a difference with the stools, but no more hives (we are watching his dairy intake also). Ok, I will spare you all the details, but now we are seeing a GI specialits at Children's and he is watning to test our son for CF. He is being pretty persistant about it also, almost to the exclusion of testing him for food allergies which is what I thought we were going to him for.
 
 Don't get me wrong I am all for testing our son for anything he deems necessary, but he just seems very focused on CF and that is concerning to us.
 
 Here are the symptoms I reported to the specialist and that he has recorded. Our son has gained little to no weight in 5 months since he has been home. This is very unusual. Most kids plump up like crazy when they get home. He has spiked 3 to 4 high fevers since he has been home (103 to 104). They go up for 24 to 48 hours and then go back down. Frequent and runny stools. Very irritable at times (although is a sweetheart regardless). And, our specialist doesn't even know this yet, but our son just got over a pretty nasty run of "asthmatic broncitis." (per our family physician).
 
 Our specialists has tried to do 2 sweat tests (with the electrodes) and neither test produced sweat. So now we are getting bloodwork done next Tuesday to test for CF.
 
 Ds does not have salty tasting skin. Also, I wouldn't consider him overly phlemy. He has gotten a few coughs since he's been home, but so have my other kids.
 
 Anyways, I would really appreciate any insight you may have. I definitely want to knwo asap if he has CF, but I just keep thinking, wouldn't he have some more symptoms if he had it.
 
 Thanks!
 
 Julie

NoExcuses · Mar 16, 2008

I would advise you to find out what type of genetic test they are doing. Some tests only test for a limited # of CF genes... which means you can get a false negative result for CF

The most accurate test out there is the Ambry Amplified test that tests for all known CF genes.

best of luck

NoExcuses · Mar 16, 2008

I would advise you to find out what type of genetic test they are doing. Some tests only test for a limited # of CF genes... which means you can get a false negative result for CF

The most accurate test out there is the Ambry Amplified test that tests for all known CF genes.

best of luck

NoExcuses · Mar 16, 2008

I would advise you to find out what type of genetic test they are doing. Some tests only test for a limited # of CF genes... which means you can get a false negative result for CF

The most accurate test out there is the Ambry Amplified test that tests for all known CF genes.

best of luck

NoExcuses · Mar 16, 2008

I would advise you to find out what type of genetic test they are doing. Some tests only test for a limited # of CF genes... which means you can get a false negative result for CF

The most accurate test out there is the Ambry Amplified test that tests for all known CF genes.

best of luck

NoExcuses · Mar 16, 2008

I would advise you to find out what type of genetic test they are doing. Some tests only test for a limited # of CF genes... which means you can get a false negative result for CF
 
 The most accurate test out there is the Ambry Amplified test that tests for all known CF genes.
 
 best of luck

JennifersHope · Mar 16, 2008

Well I think it is good they are going to rule out CF first, if it isn't CF then go from there. To me it could be anything, yes kids get colds and bronchitis etc... so that could be normal, but could maybe not be.

ALso, I was wondering if they tested his stool for Ova parasites, or have they done a culture and sensitivity on it? To me, that is my gut instinct on it, that it is more of a switching over from formula, or possibly some kind of parasite type thing in his stool, allergies, all these things are possible. I have seen a lot of babies come into our ER that were adopted oversees with all kinds of digestive issues, many times it is allergies to the food, or some type of GI infection....

I am glad they are checking to see if it is CF, if it is, you go from there and start treatments, if it isn't you thank your lucky stars and keep searching for other things.

Please keep us posted and try not to be upset that they are testing him... So many of us went so long, years before the doctor tested us for CF and we suffered for it..

It is just a rule out thing at this point, doesn't mean for sure he is going to have it.. Hope he doesn't

Jennifer

Good luck,

jennifer

JennifersHope · Mar 16, 2008

Well I think it is good they are going to rule out CF first, if it isn't CF then go from there. To me it could be anything, yes kids get colds and bronchitis etc... so that could be normal, but could maybe not be.

ALso, I was wondering if they tested his stool for Ova parasites, or have they done a culture and sensitivity on it? To me, that is my gut instinct on it, that it is more of a switching over from formula, or possibly some kind of parasite type thing in his stool, allergies, all these things are possible. I have seen a lot of babies come into our ER that were adopted oversees with all kinds of digestive issues, many times it is allergies to the food, or some type of GI infection....

I am glad they are checking to see if it is CF, if it is, you go from there and start treatments, if it isn't you thank your lucky stars and keep searching for other things.

Please keep us posted and try not to be upset that they are testing him... So many of us went so long, years before the doctor tested us for CF and we suffered for it..

It is just a rule out thing at this point, doesn't mean for sure he is going to have it.. Hope he doesn't

Jennifer

Good luck,

jennifer

JennifersHope · Mar 16, 2008

Well I think it is good they are going to rule out CF first, if it isn't CF then go from there. To me it could be anything, yes kids get colds and bronchitis etc... so that could be normal, but could maybe not be.

ALso, I was wondering if they tested his stool for Ova parasites, or have they done a culture and sensitivity on it? To me, that is my gut instinct on it, that it is more of a switching over from formula, or possibly some kind of parasite type thing in his stool, allergies, all these things are possible. I have seen a lot of babies come into our ER that were adopted oversees with all kinds of digestive issues, many times it is allergies to the food, or some type of GI infection....

I am glad they are checking to see if it is CF, if it is, you go from there and start treatments, if it isn't you thank your lucky stars and keep searching for other things.

Please keep us posted and try not to be upset that they are testing him... So many of us went so long, years before the doctor tested us for CF and we suffered for it..

It is just a rule out thing at this point, doesn't mean for sure he is going to have it.. Hope he doesn't

Jennifer

Good luck,

jennifer

JennifersHope · Mar 16, 2008

Well I think it is good they are going to rule out CF first, if it isn't CF then go from there. To me it could be anything, yes kids get colds and bronchitis etc... so that could be normal, but could maybe not be.

ALso, I was wondering if they tested his stool for Ova parasites, or have they done a culture and sensitivity on it? To me, that is my gut instinct on it, that it is more of a switching over from formula, or possibly some kind of parasite type thing in his stool, allergies, all these things are possible. I have seen a lot of babies come into our ER that were adopted oversees with all kinds of digestive issues, many times it is allergies to the food, or some type of GI infection....

I am glad they are checking to see if it is CF, if it is, you go from there and start treatments, if it isn't you thank your lucky stars and keep searching for other things.

Please keep us posted and try not to be upset that they are testing him... So many of us went so long, years before the doctor tested us for CF and we suffered for it..

It is just a rule out thing at this point, doesn't mean for sure he is going to have it.. Hope he doesn't

Jennifer

Good luck,

jennifer

JennifersHope · Mar 16, 2008

Well I think it is good they are going to rule out CF first, if it isn't CF then go from there. To me it could be anything, yes kids get colds and bronchitis etc... so that could be normal, but could maybe not be.
 
 ALso, I was wondering if they tested his stool for Ova parasites, or have they done a culture and sensitivity on it? To me, that is my gut instinct on it, that it is more of a switching over from formula, or possibly some kind of parasite type thing in his stool, allergies, all these things are possible. I have seen a lot of babies come into our ER that were adopted oversees with all kinds of digestive issues, many times it is allergies to the food, or some type of GI infection....
 
 I am glad they are checking to see if it is CF, if it is, you go from there and start treatments, if it isn't you thank your lucky stars and keep searching for other things.
 
 Please keep us posted and try not to be upset that they are testing him... So many of us went so long, years before the doctor tested us for CF and we suffered for it..
 
 It is just a rule out thing at this point, doesn't mean for sure he is going to have it.. Hope he doesn't
 
 Jennifer
 
 Good luck,
 
 jennifer

JustDucky · Mar 16, 2008

It is good that the doctor is testing for CF. I would ask them what panel of genetic testing they are doing, insist on a full panel by Ambry genetics. There are over 1500 mutations and that test looks for all of the known ones out there. If it turns out that it isn't CF, then the doc will surely look into other avenues such as allergies, celiac disease, parasites as Jenn mentioned, etc...I pray that you get answers soon. IF it is CF, your son will start getting the proper care of a CF'er to maximize his health.
Keeping you and your son in my thoughts, Jenn

JustDucky · Mar 16, 2008

It is good that the doctor is testing for CF. I would ask them what panel of genetic testing they are doing, insist on a full panel by Ambry genetics. There are over 1500 mutations and that test looks for all of the known ones out there. If it turns out that it isn't CF, then the doc will surely look into other avenues such as allergies, celiac disease, parasites as Jenn mentioned, etc...I pray that you get answers soon. IF it is CF, your son will start getting the proper care of a CF'er to maximize his health.
Keeping you and your son in my thoughts, Jenn

JustDucky · Mar 16, 2008

It is good that the doctor is testing for CF. I would ask them what panel of genetic testing they are doing, insist on a full panel by Ambry genetics. There are over 1500 mutations and that test looks for all of the known ones out there. If it turns out that it isn't CF, then the doc will surely look into other avenues such as allergies, celiac disease, parasites as Jenn mentioned, etc...I pray that you get answers soon. IF it is CF, your son will start getting the proper care of a CF'er to maximize his health.
Keeping you and your son in my thoughts, Jenn

JustDucky · Mar 16, 2008

It is good that the doctor is testing for CF. I would ask them what panel of genetic testing they are doing, insist on a full panel by Ambry genetics. There are over 1500 mutations and that test looks for all of the known ones out there. If it turns out that it isn't CF, then the doc will surely look into other avenues such as allergies, celiac disease, parasites as Jenn mentioned, etc...I pray that you get answers soon. IF it is CF, your son will start getting the proper care of a CF'er to maximize his health.
Keeping you and your son in my thoughts, Jenn

JustDucky · Mar 16, 2008

It is good that the doctor is testing for CF. I would ask them what panel of genetic testing they are doing, insist on a full panel by Ambry genetics. There are over 1500 mutations and that test looks for all of the known ones out there. If it turns out that it isn't CF, then the doc will surely look into other avenues such as allergies, celiac disease, parasites as Jenn mentioned, etc...I pray that you get answers soon. IF it is CF, your son will start getting the proper care of a CF'er to maximize his health.
 Keeping you and your son in my thoughts, Jenn

We are worried about our son. Any insight??

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