How long did you wait to be seen at CF clinic

jonah456 · Apr 9, 2010

Hi, all. We're new here. My 9yo son was diagnosed with pancreatic insufficiency in the fall, so we're trying to find what's causing it. We did a blood test, which was inconclusive for CF, so his doctor referred us to the CF clinic for a sweat test and further testing... and their first available appointment is in JUNE.

I'm wondering if that's common, or if we should try getting an appointment somewhere else. We're fortunate that we're within an hour of two CF clinics - Stanford and San Francisco. His GI doc is at Stanford, and I'd like to keep his care consistent, but I'm wondering how much that matters for initial testing.

Also, since he's already done the Ambry Amplified test, I tried to persuade the clinic to just run a sweat test for us. They said they'd confer with their doctor and ours and try to get that scheduled early, but I'm not really holding my breath. Any reason I should NOT request that? What other tests would they typically do at an initial consult?

Unfortunately I am very familiar with CF - I'm adopted because my parents had a biological child with CF who passed away when we were both children - so I feel like I'm just going to explode if I have to wait so long to get a diagnosis...

Thanks for your advice.
Lori

jonah456 · Apr 9, 2010

Hi, all. We're new here. My 9yo son was diagnosed with pancreatic insufficiency in the fall, so we're trying to find what's causing it. We did a blood test, which was inconclusive for CF, so his doctor referred us to the CF clinic for a sweat test and further testing... and their first available appointment is in JUNE.

I'm wondering if that's common, or if we should try getting an appointment somewhere else. We're fortunate that we're within an hour of two CF clinics - Stanford and San Francisco. His GI doc is at Stanford, and I'd like to keep his care consistent, but I'm wondering how much that matters for initial testing.

Also, since he's already done the Ambry Amplified test, I tried to persuade the clinic to just run a sweat test for us. They said they'd confer with their doctor and ours and try to get that scheduled early, but I'm not really holding my breath. Any reason I should NOT request that? What other tests would they typically do at an initial consult?

Unfortunately I am very familiar with CF - I'm adopted because my parents had a biological child with CF who passed away when we were both children - so I feel like I'm just going to explode if I have to wait so long to get a diagnosis...

Thanks for your advice.
Lori

jonah456 · Apr 9, 2010

Hi, all. We're new here. My 9yo son was diagnosed with pancreatic insufficiency in the fall, so we're trying to find what's causing it. We did a blood test, which was inconclusive for CF, so his doctor referred us to the CF clinic for a sweat test and further testing... and their first available appointment is in JUNE.

I'm wondering if that's common, or if we should try getting an appointment somewhere else. We're fortunate that we're within an hour of two CF clinics - Stanford and San Francisco. His GI doc is at Stanford, and I'd like to keep his care consistent, but I'm wondering how much that matters for initial testing.

Also, since he's already done the Ambry Amplified test, I tried to persuade the clinic to just run a sweat test for us. They said they'd confer with their doctor and ours and try to get that scheduled early, but I'm not really holding my breath. Any reason I should NOT request that? What other tests would they typically do at an initial consult?

Unfortunately I am very familiar with CF - I'm adopted because my parents had a biological child with CF who passed away when we were both children - so I feel like I'm just going to explode if I have to wait so long to get a diagnosis...

Thanks for your advice.
Lori

jonah456 · Apr 9, 2010

Hi, all. We're new here. My 9yo son was diagnosed with pancreatic insufficiency in the fall, so we're trying to find what's causing it. We did a blood test, which was inconclusive for CF, so his doctor referred us to the CF clinic for a sweat test and further testing... and their first available appointment is in JUNE.

I'm wondering if that's common, or if we should try getting an appointment somewhere else. We're fortunate that we're within an hour of two CF clinics - Stanford and San Francisco. His GI doc is at Stanford, and I'd like to keep his care consistent, but I'm wondering how much that matters for initial testing.

Also, since he's already done the Ambry Amplified test, I tried to persuade the clinic to just run a sweat test for us. They said they'd confer with their doctor and ours and try to get that scheduled early, but I'm not really holding my breath. Any reason I should NOT request that? What other tests would they typically do at an initial consult?

Unfortunately I am very familiar with CF - I'm adopted because my parents had a biological child with CF who passed away when we were both children - so I feel like I'm just going to explode if I have to wait so long to get a diagnosis...

Thanks for your advice.
Lori

jonah456 · Apr 9, 2010

Hi, all. We're new here. My 9yo son was diagnosed with pancreatic insufficiency in the fall, so we're trying to find what's causing it. We did a blood test, which was inconclusive for CF, so his doctor referred us to the CF clinic for a sweat test and further testing... and their first available appointment is in JUNE.
 
 I'm wondering if that's common, or if we should try getting an appointment somewhere else. We're fortunate that we're within an hour of two CF clinics - Stanford and San Francisco. His GI doc is at Stanford, and I'd like to keep his care consistent, but I'm wondering how much that matters for initial testing.
 
 Also, since he's already done the Ambry Amplified test, I tried to persuade the clinic to just run a sweat test for us. They said they'd confer with their doctor and ours and try to get that scheduled early, but I'm not really holding my breath. Any reason I should NOT request that? What other tests would they typically do at an initial consult?
 
 Unfortunately I am very familiar with CF - I'm adopted because my parents had a biological child with CF who passed away when we were both children - so I feel like I'm just going to explode if I have to wait so long to get a diagnosis...
 
 Thanks for your advice.
 Lori

kitomd21 · Apr 9, 2010

Clinics use the Ambry and sweat tests to diagnose CF. There are no other tests that yield a CF diagnosis. My daughter didn't have a sweat test as her blood test yielded two mutations.

Did your son's Ambry test state that there weren't any known mutations detected? It would beyond unlikely for both you and your husband not to carry at least one identifiable mutation. There are over 1200 mutations - all of which Ambry's tests for. There are unknown mutations, but I can't fathom the odds of both of you carrying one. How frustrating not to have a diagnosis!! What other symptoms does he have beyond PI?

If your doctors believe he's well enough to wait until June and he's taking pancreatic enzymes to compensate for the PI, I'm not sure that there is much harm in waiting until June. However, he may have a condition other than CF that shouldn't wait....tough call. A sweat test is best conducted at a CF center.

kitomd21 · Apr 9, 2010

Clinics use the Ambry and sweat tests to diagnose CF. There are no other tests that yield a CF diagnosis. My daughter didn't have a sweat test as her blood test yielded two mutations.

Did your son's Ambry test state that there weren't any known mutations detected? It would beyond unlikely for both you and your husband not to carry at least one identifiable mutation. There are over 1200 mutations - all of which Ambry's tests for. There are unknown mutations, but I can't fathom the odds of both of you carrying one. How frustrating not to have a diagnosis!! What other symptoms does he have beyond PI?

If your doctors believe he's well enough to wait until June and he's taking pancreatic enzymes to compensate for the PI, I'm not sure that there is much harm in waiting until June. However, he may have a condition other than CF that shouldn't wait....tough call. A sweat test is best conducted at a CF center.

kitomd21 · Apr 9, 2010

Clinics use the Ambry and sweat tests to diagnose CF. There are no other tests that yield a CF diagnosis. My daughter didn't have a sweat test as her blood test yielded two mutations.

Did your son's Ambry test state that there weren't any known mutations detected? It would beyond unlikely for both you and your husband not to carry at least one identifiable mutation. There are over 1200 mutations - all of which Ambry's tests for. There are unknown mutations, but I can't fathom the odds of both of you carrying one. How frustrating not to have a diagnosis!! What other symptoms does he have beyond PI?

If your doctors believe he's well enough to wait until June and he's taking pancreatic enzymes to compensate for the PI, I'm not sure that there is much harm in waiting until June. However, he may have a condition other than CF that shouldn't wait....tough call. A sweat test is best conducted at a CF center.

kitomd21 · Apr 9, 2010

Clinics use the Ambry and sweat tests to diagnose CF. There are no other tests that yield a CF diagnosis. My daughter didn't have a sweat test as her blood test yielded two mutations.

Did your son's Ambry test state that there weren't any known mutations detected? It would beyond unlikely for both you and your husband not to carry at least one identifiable mutation. There are over 1200 mutations - all of which Ambry's tests for. There are unknown mutations, but I can't fathom the odds of both of you carrying one. How frustrating not to have a diagnosis!! What other symptoms does he have beyond PI?

If your doctors believe he's well enough to wait until June and he's taking pancreatic enzymes to compensate for the PI, I'm not sure that there is much harm in waiting until June. However, he may have a condition other than CF that shouldn't wait....tough call. A sweat test is best conducted at a CF center.

kitomd21 · Apr 9, 2010

Clinics use the Ambry and sweat tests to diagnose CF. There are no other tests that yield a CF diagnosis. My daughter didn't have a sweat test as her blood test yielded two mutations.
 
 Did your son's Ambry test state that there weren't any known mutations detected? It would beyond unlikely for both you and your husband not to carry at least one identifiable mutation. There are over 1200 mutations - all of which Ambry's tests for. There are unknown mutations, but I can't fathom the odds of both of you carrying one. How frustrating not to have a diagnosis!! What other symptoms does he have beyond PI?
 
 If your doctors believe he's well enough to wait until June and he's taking pancreatic enzymes to compensate for the PI, I'm not sure that there is much harm in waiting until June. However, he may have a condition other than CF that shouldn't wait....tough call. A sweat test is best conducted at a CF center.

hmw · Apr 10, 2010

I can definitely understand how hard it is to have to wait... and right now June must seem SO far away. However, I would not go somewhere other than a CFF- accredited lab to get the sweat test done, even if it means the test could be done sooner if you do. This is because the accuracy of the sweat test is highly dependent on the test being done correctly, and the labs affiliated with the CF centers are much more likely to do it right. However, it wouldn't hurt to call the other CF center and tell them that your son has been dx'ed with pancreatic insufficiency and see if they can do the sweat test sooner. (And keep the June clinic appt. that has already been scheduled at Stanford.)

I would ask more specifically about the results of his Ambry test too~ 'inconclusive' is rather vague and not what the actual report would say. The report will state whether or not any mutations were found and if so, identify them by name. The Ambry test (which is the most comprehensive test you can get) is estimated to have a 98-99% accuracy rate, I believe. My daughter happens to be one that has one known and one 'unknown' mutation, but her sweat test was 108 and she's very symptomatic- CF is definitely a condition where the genetic test, sweat test and symptoms all have to be looked at together when making a diagnosis.

Is he taking pancreatic enzymes? Has he started gaining weight, if he has? Does he have any other concerning symptoms going on?

hmw · Apr 10, 2010

I can definitely understand how hard it is to have to wait... and right now June must seem SO far away. However, I would not go somewhere other than a CFF- accredited lab to get the sweat test done, even if it means the test could be done sooner if you do. This is because the accuracy of the sweat test is highly dependent on the test being done correctly, and the labs affiliated with the CF centers are much more likely to do it right. However, it wouldn't hurt to call the other CF center and tell them that your son has been dx'ed with pancreatic insufficiency and see if they can do the sweat test sooner. (And keep the June clinic appt. that has already been scheduled at Stanford.)

I would ask more specifically about the results of his Ambry test too~ 'inconclusive' is rather vague and not what the actual report would say. The report will state whether or not any mutations were found and if so, identify them by name. The Ambry test (which is the most comprehensive test you can get) is estimated to have a 98-99% accuracy rate, I believe. My daughter happens to be one that has one known and one 'unknown' mutation, but her sweat test was 108 and she's very symptomatic- CF is definitely a condition where the genetic test, sweat test and symptoms all have to be looked at together when making a diagnosis.

Is he taking pancreatic enzymes? Has he started gaining weight, if he has? Does he have any other concerning symptoms going on?

hmw · Apr 10, 2010

I can definitely understand how hard it is to have to wait... and right now June must seem SO far away. However, I would not go somewhere other than a CFF- accredited lab to get the sweat test done, even if it means the test could be done sooner if you do. This is because the accuracy of the sweat test is highly dependent on the test being done correctly, and the labs affiliated with the CF centers are much more likely to do it right. However, it wouldn't hurt to call the other CF center and tell them that your son has been dx'ed with pancreatic insufficiency and see if they can do the sweat test sooner. (And keep the June clinic appt. that has already been scheduled at Stanford.)

I would ask more specifically about the results of his Ambry test too~ 'inconclusive' is rather vague and not what the actual report would say. The report will state whether or not any mutations were found and if so, identify them by name. The Ambry test (which is the most comprehensive test you can get) is estimated to have a 98-99% accuracy rate, I believe. My daughter happens to be one that has one known and one 'unknown' mutation, but her sweat test was 108 and she's very symptomatic- CF is definitely a condition where the genetic test, sweat test and symptoms all have to be looked at together when making a diagnosis.

Is he taking pancreatic enzymes? Has he started gaining weight, if he has? Does he have any other concerning symptoms going on?

hmw · Apr 10, 2010

I can definitely understand how hard it is to have to wait... and right now June must seem SO far away. However, I would not go somewhere other than a CFF- accredited lab to get the sweat test done, even if it means the test could be done sooner if you do. This is because the accuracy of the sweat test is highly dependent on the test being done correctly, and the labs affiliated with the CF centers are much more likely to do it right. However, it wouldn't hurt to call the other CF center and tell them that your son has been dx'ed with pancreatic insufficiency and see if they can do the sweat test sooner. (And keep the June clinic appt. that has already been scheduled at Stanford.)

I would ask more specifically about the results of his Ambry test too~ 'inconclusive' is rather vague and not what the actual report would say. The report will state whether or not any mutations were found and if so, identify them by name. The Ambry test (which is the most comprehensive test you can get) is estimated to have a 98-99% accuracy rate, I believe. My daughter happens to be one that has one known and one 'unknown' mutation, but her sweat test was 108 and she's very symptomatic- CF is definitely a condition where the genetic test, sweat test and symptoms all have to be looked at together when making a diagnosis.

Is he taking pancreatic enzymes? Has he started gaining weight, if he has? Does he have any other concerning symptoms going on?

hmw · Apr 10, 2010

I can definitely understand how hard it is to have to wait... and right now June must seem SO far away. However, I would not go somewhere other than a CFF- accredited lab to get the sweat test done, even if it means the test could be done sooner if you do. This is because the accuracy of the sweat test is highly dependent on the test being done correctly, and the labs affiliated with the CF centers are much more likely to do it right. However, it wouldn't hurt to call the other CF center and tell them that your son has been dx'ed with pancreatic insufficiency and see if they can do the sweat test sooner. (And keep the June clinic appt. that has already been scheduled at Stanford.)
 
 I would ask more specifically about the results of his Ambry test too~ 'inconclusive' is rather vague and not what the actual report would say. The report will state whether or not any mutations were found and if so, identify them by name. The Ambry test (which is the most comprehensive test you can get) is estimated to have a 98-99% accuracy rate, I believe. My daughter happens to be one that has one known and one 'unknown' mutation, but her sweat test was 108 and she's very symptomatic- CF is definitely a condition where the genetic test, sweat test and symptoms all have to be looked at together when making a diagnosis.
 
 Is he taking pancreatic enzymes? Has he started gaining weight, if he has? Does he have any other concerning symptoms going on?

sdelorenzo · Apr 10, 2010

Often if you just talk to a receptionist, they will only give you the first available and have no way to get you in sooner. But a nurse can get you an appointment quicker. Find the name of the doctor's at the clinic then ask to speak to their nurses. Leave them a message explaining your situation and your desire to get an answer soon. If you don't get a response move on to the next nurse. The same thing happened to me this week. I called a new clinic and the first available time was the first week in June. I left a message with the doctor's nurse and she called back with a April 20th time. Hope you find some answers soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf

sdelorenzo · Apr 10, 2010

Often if you just talk to a receptionist, they will only give you the first available and have no way to get you in sooner. But a nurse can get you an appointment quicker. Find the name of the doctor's at the clinic then ask to speak to their nurses. Leave them a message explaining your situation and your desire to get an answer soon. If you don't get a response move on to the next nurse. The same thing happened to me this week. I called a new clinic and the first available time was the first week in June. I left a message with the doctor's nurse and she called back with a April 20th time. Hope you find some answers soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf

sdelorenzo · Apr 10, 2010

Often if you just talk to a receptionist, they will only give you the first available and have no way to get you in sooner. But a nurse can get you an appointment quicker. Find the name of the doctor's at the clinic then ask to speak to their nurses. Leave them a message explaining your situation and your desire to get an answer soon. If you don't get a response move on to the next nurse. The same thing happened to me this week. I called a new clinic and the first available time was the first week in June. I left a message with the doctor's nurse and she called back with a April 20th time. Hope you find some answers soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf

sdelorenzo · Apr 10, 2010

Often if you just talk to a receptionist, they will only give you the first available and have no way to get you in sooner. But a nurse can get you an appointment quicker. Find the name of the doctor's at the clinic then ask to speak to their nurses. Leave them a message explaining your situation and your desire to get an answer soon. If you don't get a response move on to the next nurse. The same thing happened to me this week. I called a new clinic and the first available time was the first week in June. I left a message with the doctor's nurse and she called back with a April 20th time. Hope you find some answers soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf

sdelorenzo · Apr 10, 2010

Often if you just talk to a receptionist, they will only give you the first available and have no way to get you in sooner. But a nurse can get you an appointment quicker. Find the name of the doctor's at the clinic then ask to speak to their nurses. Leave them a message explaining your situation and your desire to get an answer soon. If you don't get a response move on to the next nurse. The same thing happened to me this week. I called a new clinic and the first available time was the first week in June. I left a message with the doctor's nurse and she called back with a April 20th time. Hope you find some answers soon.
 Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 year no cf

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