Questions for anyone who can help PLEASE!

[pjspiegle]

Hi,
We go to the Denver Childrens Clinic. If you don't mind me asking, who is the doctor you saw? I know that there are 4 that I absolutely trust completely, but there are several that I would not be happy with and would most definetly ask for a second opinion with. 3 of the pulmo docs are top in the country and I would recommend asking for a consult, 2nd opinion, from one of them if they are not the one you are already seeing, regardless of whether or not your child does or doesn't have CF, and 2 are great if it isn't CF and truly is just asthma (not to make that sound like it isn't a big deal).

Patty

 

[pjspiegle]

Hi,
We go to the Denver Childrens Clinic. If you don't mind me asking, who is the doctor you saw? I know that there are 4 that I absolutely trust completely, but there are several that I would not be happy with and would most definetly ask for a second opinion with. 3 of the pulmo docs are top in the country and I would recommend asking for a consult, 2nd opinion, from one of them if they are not the one you are already seeing, regardless of whether or not your child does or doesn't have CF, and 2 are great if it isn't CF and truly is just asthma (not to make that sound like it isn't a big deal).

Patty

 

[pjspiegle]

Hi,
We go to the Denver Childrens Clinic. If you don't mind me asking, who is the doctor you saw? I know that there are 4 that I absolutely trust completely, but there are several that I would not be happy with and would most definetly ask for a second opinion with. 3 of the pulmo docs are top in the country and I would recommend asking for a consult, 2nd opinion, from one of them if they are not the one you are already seeing, regardless of whether or not your child does or doesn't have CF, and 2 are great if it isn't CF and truly is just asthma (not to make that sound like it isn't a big deal).

Patty

 

[pjspiegle]

Hi,
We go to the Denver Childrens Clinic. If you don't mind me asking, who is the doctor you saw? I know that there are 4 that I absolutely trust completely, but there are several that I would not be happy with and would most definetly ask for a second opinion with. 3 of the pulmo docs are top in the country and I would recommend asking for a consult, 2nd opinion, from one of them if they are not the one you are already seeing, regardless of whether or not your child does or doesn't have CF, and 2 are great if it isn't CF and truly is just asthma (not to make that sound like it isn't a big deal).

Patty

 

[pjspiegle]

Hi,
<br />We go to the Denver Childrens Clinic. If you don't mind me asking, who is the doctor you saw? I know that there are 4 that I absolutely trust completely, but there are several that I would not be happy with and would most definetly ask for a second opinion with. 3 of the pulmo docs are top in the country and I would recommend asking for a consult, 2nd opinion, from one of them if they are not the one you are already seeing, regardless of whether or not your child does or doesn't have CF, and 2 are great if it isn't CF and truly is just asthma (not to make that sound like it isn't a big deal).
<br />
<br />Patty

 

[mandamarie]

We were in Denver 4 years ago! I honestly don't remember the name of the DR that we saw, but I think that it was a pulmonologist (sp) and not a CF DR. I will look back in my records and find it though for sure. I know that our closest "big" hospital is Billings Montana and there is a CF DR from Denver that travels there every 3 months, but we have never seen him. The DR that decided to run the CF genetic test was his immunologist because his tests on that were normal. I have read off other forums on here they need a certain amount of sweat to get an accurate reading. I am going to call down to Denver Childrens and see if I can find out how much sweat they collected and what the Sodium and Chloride were. I honestly don't think I was ever told what the actual numbers were just that they were pretty sure he didn't have it. With Denver being 11 hours away, if we have to go back I want to see a DR that I know will do a good job! Who are the DRs there that you trust. Thanks everyone for their insight so far! Oh and as for his stools, he goes from constipated to diahrea all the time and complains of tummy aches but I have just associated this with the meds from continual sinus and upper respritory infections plus inhalers vitamins etc. And for licking his foot on the bottom, I had never heard of doing that, but when I do it is way saltier then his cheeck what I have tasted before. This whole thing is just confusing and draining. Waiting and not knowing! I don't know how all of you handled it with all the other normal every day problems also! Thank you all!!

 

[mandamarie]

We were in Denver 4 years ago! I honestly don't remember the name of the DR that we saw, but I think that it was a pulmonologist (sp) and not a CF DR. I will look back in my records and find it though for sure. I know that our closest "big" hospital is Billings Montana and there is a CF DR from Denver that travels there every 3 months, but we have never seen him. The DR that decided to run the CF genetic test was his immunologist because his tests on that were normal. I have read off other forums on here they need a certain amount of sweat to get an accurate reading. I am going to call down to Denver Childrens and see if I can find out how much sweat they collected and what the Sodium and Chloride were. I honestly don't think I was ever told what the actual numbers were just that they were pretty sure he didn't have it. With Denver being 11 hours away, if we have to go back I want to see a DR that I know will do a good job! Who are the DRs there that you trust. Thanks everyone for their insight so far! Oh and as for his stools, he goes from constipated to diahrea all the time and complains of tummy aches but I have just associated this with the meds from continual sinus and upper respritory infections plus inhalers vitamins etc. And for licking his foot on the bottom, I had never heard of doing that, but when I do it is way saltier then his cheeck what I have tasted before. This whole thing is just confusing and draining. Waiting and not knowing! I don't know how all of you handled it with all the other normal every day problems also! Thank you all!!

 

[mandamarie]

We were in Denver 4 years ago! I honestly don't remember the name of the DR that we saw, but I think that it was a pulmonologist (sp) and not a CF DR. I will look back in my records and find it though for sure. I know that our closest "big" hospital is Billings Montana and there is a CF DR from Denver that travels there every 3 months, but we have never seen him. The DR that decided to run the CF genetic test was his immunologist because his tests on that were normal. I have read off other forums on here they need a certain amount of sweat to get an accurate reading. I am going to call down to Denver Childrens and see if I can find out how much sweat they collected and what the Sodium and Chloride were. I honestly don't think I was ever told what the actual numbers were just that they were pretty sure he didn't have it. With Denver being 11 hours away, if we have to go back I want to see a DR that I know will do a good job! Who are the DRs there that you trust. Thanks everyone for their insight so far! Oh and as for his stools, he goes from constipated to diahrea all the time and complains of tummy aches but I have just associated this with the meds from continual sinus and upper respritory infections plus inhalers vitamins etc. And for licking his foot on the bottom, I had never heard of doing that, but when I do it is way saltier then his cheeck what I have tasted before. This whole thing is just confusing and draining. Waiting and not knowing! I don't know how all of you handled it with all the other normal every day problems also! Thank you all!!

 

[mandamarie]

We were in Denver 4 years ago! I honestly don't remember the name of the DR that we saw, but I think that it was a pulmonologist (sp) and not a CF DR. I will look back in my records and find it though for sure. I know that our closest "big" hospital is Billings Montana and there is a CF DR from Denver that travels there every 3 months, but we have never seen him. The DR that decided to run the CF genetic test was his immunologist because his tests on that were normal. I have read off other forums on here they need a certain amount of sweat to get an accurate reading. I am going to call down to Denver Childrens and see if I can find out how much sweat they collected and what the Sodium and Chloride were. I honestly don't think I was ever told what the actual numbers were just that they were pretty sure he didn't have it. With Denver being 11 hours away, if we have to go back I want to see a DR that I know will do a good job! Who are the DRs there that you trust. Thanks everyone for their insight so far! Oh and as for his stools, he goes from constipated to diahrea all the time and complains of tummy aches but I have just associated this with the meds from continual sinus and upper respritory infections plus inhalers vitamins etc. And for licking his foot on the bottom, I had never heard of doing that, but when I do it is way saltier then his cheeck what I have tasted before. This whole thing is just confusing and draining. Waiting and not knowing! I don't know how all of you handled it with all the other normal every day problems also! Thank you all!!

 

[mandamarie]

We were in Denver 4 years ago! I honestly don't remember the name of the DR that we saw, but I think that it was a pulmonologist (sp) and not a CF DR. I will look back in my records and find it though for sure. I know that our closest "big" hospital is Billings Montana and there is a CF DR from Denver that travels there every 3 months, but we have never seen him. The DR that decided to run the CF genetic test was his immunologist because his tests on that were normal. I have read off other forums on here they need a certain amount of sweat to get an accurate reading. I am going to call down to Denver Childrens and see if I can find out how much sweat they collected and what the Sodium and Chloride were. I honestly don't think I was ever told what the actual numbers were just that they were pretty sure he didn't have it. With Denver being 11 hours away, if we have to go back I want to see a DR that I know will do a good job! Who are the DRs there that you trust. Thanks everyone for their insight so far! Oh and as for his stools, he goes from constipated to diahrea all the time and complains of tummy aches but I have just associated this with the meds from continual sinus and upper respritory infections plus inhalers vitamins etc. And for licking his foot on the bottom, I had never heard of doing that, but when I do it is way saltier then his cheeck what I have tasted before. This whole thing is just confusing and draining. Waiting and not knowing! I don't know how all of you handled it with all the other normal every day problems also! Thank you all!!

 

[ktsmom]

I think you are on the right track as far as getting details about the sweat chloride. Any information you can get as far as records and test results is good, at this point.

To clearly answer your question about what to do if the genetic testing is negative, ask how many mutations did they check for at Mayo. I would then ask for the full screening from Ambry (as other posters mentioned).

I am sorry you are having these problems but it sounds like you are doing a good job to get resolution, one way or the other. We also fought to get our daughter diagnosed (she had GI symptoms only). She feels so much better now and is doing very well. Good luck and please let us know. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

I think you are on the right track as far as getting details about the sweat chloride. Any information you can get as far as records and test results is good, at this point.

To clearly answer your question about what to do if the genetic testing is negative, ask how many mutations did they check for at Mayo. I would then ask for the full screening from Ambry (as other posters mentioned).

I am sorry you are having these problems but it sounds like you are doing a good job to get resolution, one way or the other. We also fought to get our daughter diagnosed (she had GI symptoms only). She feels so much better now and is doing very well. Good luck and please let us know. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

I think you are on the right track as far as getting details about the sweat chloride. Any information you can get as far as records and test results is good, at this point.

To clearly answer your question about what to do if the genetic testing is negative, ask how many mutations did they check for at Mayo. I would then ask for the full screening from Ambry (as other posters mentioned).

I am sorry you are having these problems but it sounds like you are doing a good job to get resolution, one way or the other. We also fought to get our daughter diagnosed (she had GI symptoms only). She feels so much better now and is doing very well. Good luck and please let us know. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

I think you are on the right track as far as getting details about the sweat chloride. Any information you can get as far as records and test results is good, at this point.

To clearly answer your question about what to do if the genetic testing is negative, ask how many mutations did they check for at Mayo. I would then ask for the full screening from Ambry (as other posters mentioned).

I am sorry you are having these problems but it sounds like you are doing a good job to get resolution, one way or the other. We also fought to get our daughter diagnosed (she had GI symptoms only). She feels so much better now and is doing very well. Good luck and please let us know. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

I think you are on the right track as far as getting details about the sweat chloride. Any information you can get as far as records and test results is good, at this point.
<br />
<br />To clearly answer your question about what to do if the genetic testing is negative, ask how many mutations did they check for at Mayo. I would then ask for the full screening from Ambry (as other posters mentioned).
<br />
<br />I am sorry you are having these problems but it sounds like you are doing a good job to get resolution, one way or the other. We also fought to get our daughter diagnosed (she had GI symptoms only). She feels so much better now and is doing very well. Good luck and please let us know. <img src="i/expressions/heart.gif" border="0">

 

[mandamarie]

Hey everyone! I know I saw on here somewhere that the DR is supposed to collect a certain amount of sweat to make sure the test is accurate. I was wondering if someone can let me know what that is. Also, what are the numbers for the sweat test that are negative, borderline and positive? I got ahold of Denver Childrens and they were faxing the results from his sweat test from 4 years ago (6 months at the time) to our pediatrician for me to get. (His pediatrician referred him to an immunologist and she is the one who scheduled the CF test) Also, we should hopefully be getting some of the results back this week but the CF test should be back next week. Oh and one more thing, she is not sure wich test that they are doing if it is the Ambry or just for the main 97. She isn't to familiar with all this. Which test shows if you are even a carrier of the CF gene? Because she said that she ordered for that to be done and also asked to have everything checked but she didn't realize that there were different ones. Thanks a million!!!!

 

[mandamarie]

Hey everyone! I know I saw on here somewhere that the DR is supposed to collect a certain amount of sweat to make sure the test is accurate. I was wondering if someone can let me know what that is. Also, what are the numbers for the sweat test that are negative, borderline and positive? I got ahold of Denver Childrens and they were faxing the results from his sweat test from 4 years ago (6 months at the time) to our pediatrician for me to get. (His pediatrician referred him to an immunologist and she is the one who scheduled the CF test) Also, we should hopefully be getting some of the results back this week but the CF test should be back next week. Oh and one more thing, she is not sure wich test that they are doing if it is the Ambry or just for the main 97. She isn't to familiar with all this. Which test shows if you are even a carrier of the CF gene? Because she said that she ordered for that to be done and also asked to have everything checked but she didn't realize that there were different ones. Thanks a million!!!!

 

[mandamarie]

Hey everyone! I know I saw on here somewhere that the DR is supposed to collect a certain amount of sweat to make sure the test is accurate. I was wondering if someone can let me know what that is. Also, what are the numbers for the sweat test that are negative, borderline and positive? I got ahold of Denver Childrens and they were faxing the results from his sweat test from 4 years ago (6 months at the time) to our pediatrician for me to get. (His pediatrician referred him to an immunologist and she is the one who scheduled the CF test) Also, we should hopefully be getting some of the results back this week but the CF test should be back next week. Oh and one more thing, she is not sure wich test that they are doing if it is the Ambry or just for the main 97. She isn't to familiar with all this. Which test shows if you are even a carrier of the CF gene? Because she said that she ordered for that to be done and also asked to have everything checked but she didn't realize that there were different ones. Thanks a million!!!!

 

[mandamarie]

Hey everyone! I know I saw on here somewhere that the DR is supposed to collect a certain amount of sweat to make sure the test is accurate. I was wondering if someone can let me know what that is. Also, what are the numbers for the sweat test that are negative, borderline and positive? I got ahold of Denver Childrens and they were faxing the results from his sweat test from 4 years ago (6 months at the time) to our pediatrician for me to get. (His pediatrician referred him to an immunologist and she is the one who scheduled the CF test) Also, we should hopefully be getting some of the results back this week but the CF test should be back next week. Oh and one more thing, she is not sure wich test that they are doing if it is the Ambry or just for the main 97. She isn't to familiar with all this. Which test shows if you are even a carrier of the CF gene? Because she said that she ordered for that to be done and also asked to have everything checked but she didn't realize that there were different ones. Thanks a million!!!!

 

[mandamarie]

Hey everyone! I know I saw on here somewhere that the DR is supposed to collect a certain amount of sweat to make sure the test is accurate. I was wondering if someone can let me know what that is. Also, what are the numbers for the sweat test that are negative, borderline and positive? I got ahold of Denver Childrens and they were faxing the results from his sweat test from 4 years ago (6 months at the time) to our pediatrician for me to get. (His pediatrician referred him to an immunologist and she is the one who scheduled the CF test) Also, we should hopefully be getting some of the results back this week but the CF test should be back next week. Oh and one more thing, she is not sure wich test that they are doing if it is the Ambry or just for the main 97. She isn't to familiar with all this. Which test shows if you are even a carrier of the CF gene? Because she said that she ordered for that to be done and also asked to have everything checked but she didn't realize that there were different ones. Thanks a million!!!!