Need support, what can I expect?

[momja]

I have a one year old who was tested for CF 2 weeks ago at Children's Hospital. They were unable to collect enough sweat with the first test so I opted to do it again on the same day. They stimulated the skin twice as long but still unable to collect enough sweat. The guy doing the test was nice enough but we (my DH and I) got the impression that he felt it was unnecessary. He asked us to talk to our son's Ped to see if she wanted to schedule for a third test.

When I got home there were two messages on the machine from my son's Ped stating that yes indeed she wants another sweat test but wanted to wait one month to see if we could get our little guy to gain more weight.
I have visited this site almost daily trying to learn all I can about this illness. I just want to be prepared.

My son was born at 8 lbs 14 oz and has steadily decreased on the weight curve to the point of falling off. At 1 year he weighed 17 lbs 14 oz. (this was after an 8 oz bottle in the waiting room).
He had a bout of pneumonia at 8 mos that didn't require hospitalization but seemed to linger. He does have extremely foul loose BM's. His Ped did a blood and stool test at 10 months and they came back normal but because of the low weight gain she referred us for CF testing.

He will be tested again at the end of the month. While making the appt the receptionist informed me that they will try something different to add to the sweat collected. Do any of you know what this is? What can I expect? I have so many questions but this is getting long. Everybody I talk to says "Oh, he won't have it". Nobody understands what this feels like; even my DH thinks all will come back fine. I just have to be prepared if it doesn't.
Thanks

 

[momja]

I have a one year old who was tested for CF 2 weeks ago at Children's Hospital. They were unable to collect enough sweat with the first test so I opted to do it again on the same day. They stimulated the skin twice as long but still unable to collect enough sweat. The guy doing the test was nice enough but we (my DH and I) got the impression that he felt it was unnecessary. He asked us to talk to our son's Ped to see if she wanted to schedule for a third test.

When I got home there were two messages on the machine from my son's Ped stating that yes indeed she wants another sweat test but wanted to wait one month to see if we could get our little guy to gain more weight.
I have visited this site almost daily trying to learn all I can about this illness. I just want to be prepared.

My son was born at 8 lbs 14 oz and has steadily decreased on the weight curve to the point of falling off. At 1 year he weighed 17 lbs 14 oz. (this was after an 8 oz bottle in the waiting room).
He had a bout of pneumonia at 8 mos that didn't require hospitalization but seemed to linger. He does have extremely foul loose BM's. His Ped did a blood and stool test at 10 months and they came back normal but because of the low weight gain she referred us for CF testing.

He will be tested again at the end of the month. While making the appt the receptionist informed me that they will try something different to add to the sweat collected. Do any of you know what this is? What can I expect? I have so many questions but this is getting long. Everybody I talk to says "Oh, he won't have it". Nobody understands what this feels like; even my DH thinks all will come back fine. I just have to be prepared if it doesn't.
Thanks

 

[momja]

I have a one year old who was tested for CF 2 weeks ago at Children's Hospital. They were unable to collect enough sweat with the first test so I opted to do it again on the same day. They stimulated the skin twice as long but still unable to collect enough sweat. The guy doing the test was nice enough but we (my DH and I) got the impression that he felt it was unnecessary. He asked us to talk to our son's Ped to see if she wanted to schedule for a third test.

When I got home there were two messages on the machine from my son's Ped stating that yes indeed she wants another sweat test but wanted to wait one month to see if we could get our little guy to gain more weight.
I have visited this site almost daily trying to learn all I can about this illness. I just want to be prepared.

My son was born at 8 lbs 14 oz and has steadily decreased on the weight curve to the point of falling off. At 1 year he weighed 17 lbs 14 oz. (this was after an 8 oz bottle in the waiting room).
He had a bout of pneumonia at 8 mos that didn't require hospitalization but seemed to linger. He does have extremely foul loose BM's. His Ped did a blood and stool test at 10 months and they came back normal but because of the low weight gain she referred us for CF testing.

He will be tested again at the end of the month. While making the appt the receptionist informed me that they will try something different to add to the sweat collected. Do any of you know what this is? What can I expect? I have so many questions but this is getting long. Everybody I talk to says "Oh, he won't have it". Nobody understands what this feels like; even my DH thinks all will come back fine. I just have to be prepared if it doesn't.
Thanks

 

[momja]

I have a one year old who was tested for CF 2 weeks ago at Children's Hospital. They were unable to collect enough sweat with the first test so I opted to do it again on the same day. They stimulated the skin twice as long but still unable to collect enough sweat. The guy doing the test was nice enough but we (my DH and I) got the impression that he felt it was unnecessary. He asked us to talk to our son's Ped to see if she wanted to schedule for a third test.

When I got home there were two messages on the machine from my son's Ped stating that yes indeed she wants another sweat test but wanted to wait one month to see if we could get our little guy to gain more weight.
I have visited this site almost daily trying to learn all I can about this illness. I just want to be prepared.

My son was born at 8 lbs 14 oz and has steadily decreased on the weight curve to the point of falling off. At 1 year he weighed 17 lbs 14 oz. (this was after an 8 oz bottle in the waiting room).
He had a bout of pneumonia at 8 mos that didn't require hospitalization but seemed to linger. He does have extremely foul loose BM's. His Ped did a blood and stool test at 10 months and they came back normal but because of the low weight gain she referred us for CF testing.

He will be tested again at the end of the month. While making the appt the receptionist informed me that they will try something different to add to the sweat collected. Do any of you know what this is? What can I expect? I have so many questions but this is getting long. Everybody I talk to says "Oh, he won't have it". Nobody understands what this feels like; even my DH thinks all will come back fine. I just have to be prepared if it doesn't.
Thanks

 

[momja]

I have a one year old who was tested for CF 2 weeks ago at Children's Hospital. They were unable to collect enough sweat with the first test so I opted to do it again on the same day. They stimulated the skin twice as long but still unable to collect enough sweat. The guy doing the test was nice enough but we (my DH and I) got the impression that he felt it was unnecessary. He asked us to talk to our son's Ped to see if she wanted to schedule for a third test.

When I got home there were two messages on the machine from my son's Ped stating that yes indeed she wants another sweat test but wanted to wait one month to see if we could get our little guy to gain more weight.
I have visited this site almost daily trying to learn all I can about this illness. I just want to be prepared.

My son was born at 8 lbs 14 oz and has steadily decreased on the weight curve to the point of falling off. At 1 year he weighed 17 lbs 14 oz. (this was after an 8 oz bottle in the waiting room).
He had a bout of pneumonia at 8 mos that didn't require hospitalization but seemed to linger. He does have extremely foul loose BM's. His Ped did a blood and stool test at 10 months and they came back normal but because of the low weight gain she referred us for CF testing.

He will be tested again at the end of the month. While making the appt the receptionist informed me that they will try something different to add to the sweat collected. Do any of you know what this is? What can I expect? I have so many questions but this is getting long. Everybody I talk to says "Oh, he won't have it". Nobody understands what this feels like; even my DH thinks all will come back fine. I just have to be prepared if it doesn't.
Thanks

 

[momja]

I have a one year old who was tested for CF 2 weeks ago at Children's Hospital. They were unable to collect enough sweat with the first test so I opted to do it again on the same day. They stimulated the skin twice as long but still unable to collect enough sweat. The guy doing the test was nice enough but we (my DH and I) got the impression that he felt it was unnecessary. He asked us to talk to our son's Ped to see if she wanted to schedule for a third test.

When I got home there were two messages on the machine from my son's Ped stating that yes indeed she wants another sweat test but wanted to wait one month to see if we could get our little guy to gain more weight.
I have visited this site almost daily trying to learn all I can about this illness. I just want to be prepared.

My son was born at 8 lbs 14 oz and has steadily decreased on the weight curve to the point of falling off. At 1 year he weighed 17 lbs 14 oz. (this was after an 8 oz bottle in the waiting room).
He had a bout of pneumonia at 8 mos that didn't require hospitalization but seemed to linger. He does have extremely foul loose BM's. His Ped did a blood and stool test at 10 months and they came back normal but because of the low weight gain she referred us for CF testing.

He will be tested again at the end of the month. While making the appt the receptionist informed me that they will try something different to add to the sweat collected. Do any of you know what this is? What can I expect? I have so many questions but this is getting long. Everybody I talk to says "Oh, he won't have it". Nobody understands what this feels like; even my DH thinks all will come back fine. I just have to be prepared if it doesn't.
Thanks

 

[okok]

I'm so sorry you have waited so long without any answers. It sounds really frustrating. Also i completely understand how frustrating family can be at times like this. I remember feeling so worried and confused, unsure of whether or not i should trust myself, and having everyone say "Oh she's fine. There is no way she has CF" which made me feel so much more confused and unsure of myself. It is so difficult to advocate for your child when you feel that way. Of course there is a possibility your child does not have CF, but the bottom line is that you need to find out whether or not your son has CF so you can get to the bottom of what is causing his health issues. No one should question that and whether or not your son actually has CF is irrelevant because either way the information you get from this test will be very helpful to figuring out what could be going on with his health.

As far as the sweat collection, i'm not sure how they could improve it, except i do think some sweat test methods (the coil method as opposed to filter paper method) may require less sweat in order to get a valid result. Other than that, i do know that sweat should be stimulated by pilocarpine ionotophoresis and that being well hydrated helps with getting enough sweat.

I'm sure you've read people's reccomedations to seek genetic testing. Is there some reason your doctor won't just order a genetic test while you are attempting to get enough sweat from the sweat test? (Ie insurance won't pay for it without sweat test results.) Also, as i am sure you are aware, false negatives and false positives are possible so if your son is protein malnourished (lab tests can determine this) and has a negative sweat test you will probably want to get genetic testing too. Also get genetic testing for anything above 30 since 23% of people with a sweat chloride above 30 have 2 CFTR mutations. Ambry or quest offer the most comprehensive genetic testing but not all insurance will cover it until they have exhausted other means of genetic testing.

Good luck and let us know how it goes!

 

[okok]

I'm so sorry you have waited so long without any answers. It sounds really frustrating. Also i completely understand how frustrating family can be at times like this. I remember feeling so worried and confused, unsure of whether or not i should trust myself, and having everyone say "Oh she's fine. There is no way she has CF" which made me feel so much more confused and unsure of myself. It is so difficult to advocate for your child when you feel that way. Of course there is a possibility your child does not have CF, but the bottom line is that you need to find out whether or not your son has CF so you can get to the bottom of what is causing his health issues. No one should question that and whether or not your son actually has CF is irrelevant because either way the information you get from this test will be very helpful to figuring out what could be going on with his health.

As far as the sweat collection, i'm not sure how they could improve it, except i do think some sweat test methods (the coil method as opposed to filter paper method) may require less sweat in order to get a valid result. Other than that, i do know that sweat should be stimulated by pilocarpine ionotophoresis and that being well hydrated helps with getting enough sweat.

I'm sure you've read people's reccomedations to seek genetic testing. Is there some reason your doctor won't just order a genetic test while you are attempting to get enough sweat from the sweat test? (Ie insurance won't pay for it without sweat test results.) Also, as i am sure you are aware, false negatives and false positives are possible so if your son is protein malnourished (lab tests can determine this) and has a negative sweat test you will probably want to get genetic testing too. Also get genetic testing for anything above 30 since 23% of people with a sweat chloride above 30 have 2 CFTR mutations. Ambry or quest offer the most comprehensive genetic testing but not all insurance will cover it until they have exhausted other means of genetic testing.

Good luck and let us know how it goes!

 

[okok]

I'm so sorry you have waited so long without any answers. It sounds really frustrating. Also i completely understand how frustrating family can be at times like this. I remember feeling so worried and confused, unsure of whether or not i should trust myself, and having everyone say "Oh she's fine. There is no way she has CF" which made me feel so much more confused and unsure of myself. It is so difficult to advocate for your child when you feel that way. Of course there is a possibility your child does not have CF, but the bottom line is that you need to find out whether or not your son has CF so you can get to the bottom of what is causing his health issues. No one should question that and whether or not your son actually has CF is irrelevant because either way the information you get from this test will be very helpful to figuring out what could be going on with his health.

As far as the sweat collection, i'm not sure how they could improve it, except i do think some sweat test methods (the coil method as opposed to filter paper method) may require less sweat in order to get a valid result. Other than that, i do know that sweat should be stimulated by pilocarpine ionotophoresis and that being well hydrated helps with getting enough sweat.

I'm sure you've read people's reccomedations to seek genetic testing. Is there some reason your doctor won't just order a genetic test while you are attempting to get enough sweat from the sweat test? (Ie insurance won't pay for it without sweat test results.) Also, as i am sure you are aware, false negatives and false positives are possible so if your son is protein malnourished (lab tests can determine this) and has a negative sweat test you will probably want to get genetic testing too. Also get genetic testing for anything above 30 since 23% of people with a sweat chloride above 30 have 2 CFTR mutations. Ambry or quest offer the most comprehensive genetic testing but not all insurance will cover it until they have exhausted other means of genetic testing.

Good luck and let us know how it goes!

 

[okok]

I'm so sorry you have waited so long without any answers. It sounds really frustrating. Also i completely understand how frustrating family can be at times like this. I remember feeling so worried and confused, unsure of whether or not i should trust myself, and having everyone say "Oh she's fine. There is no way she has CF" which made me feel so much more confused and unsure of myself. It is so difficult to advocate for your child when you feel that way. Of course there is a possibility your child does not have CF, but the bottom line is that you need to find out whether or not your son has CF so you can get to the bottom of what is causing his health issues. No one should question that and whether or not your son actually has CF is irrelevant because either way the information you get from this test will be very helpful to figuring out what could be going on with his health.

As far as the sweat collection, i'm not sure how they could improve it, except i do think some sweat test methods (the coil method as opposed to filter paper method) may require less sweat in order to get a valid result. Other than that, i do know that sweat should be stimulated by pilocarpine ionotophoresis and that being well hydrated helps with getting enough sweat.

I'm sure you've read people's reccomedations to seek genetic testing. Is there some reason your doctor won't just order a genetic test while you are attempting to get enough sweat from the sweat test? (Ie insurance won't pay for it without sweat test results.) Also, as i am sure you are aware, false negatives and false positives are possible so if your son is protein malnourished (lab tests can determine this) and has a negative sweat test you will probably want to get genetic testing too. Also get genetic testing for anything above 30 since 23% of people with a sweat chloride above 30 have 2 CFTR mutations. Ambry or quest offer the most comprehensive genetic testing but not all insurance will cover it until they have exhausted other means of genetic testing.

Good luck and let us know how it goes!

 

[okok]

I'm so sorry you have waited so long without any answers. It sounds really frustrating. Also i completely understand how frustrating family can be at times like this. I remember feeling so worried and confused, unsure of whether or not i should trust myself, and having everyone say "Oh she's fine. There is no way she has CF" which made me feel so much more confused and unsure of myself. It is so difficult to advocate for your child when you feel that way. Of course there is a possibility your child does not have CF, but the bottom line is that you need to find out whether or not your son has CF so you can get to the bottom of what is causing his health issues. No one should question that and whether or not your son actually has CF is irrelevant because either way the information you get from this test will be very helpful to figuring out what could be going on with his health.

As far as the sweat collection, i'm not sure how they could improve it, except i do think some sweat test methods (the coil method as opposed to filter paper method) may require less sweat in order to get a valid result. Other than that, i do know that sweat should be stimulated by pilocarpine ionotophoresis and that being well hydrated helps with getting enough sweat.

I'm sure you've read people's reccomedations to seek genetic testing. Is there some reason your doctor won't just order a genetic test while you are attempting to get enough sweat from the sweat test? (Ie insurance won't pay for it without sweat test results.) Also, as i am sure you are aware, false negatives and false positives are possible so if your son is protein malnourished (lab tests can determine this) and has a negative sweat test you will probably want to get genetic testing too. Also get genetic testing for anything above 30 since 23% of people with a sweat chloride above 30 have 2 CFTR mutations. Ambry or quest offer the most comprehensive genetic testing but not all insurance will cover it until they have exhausted other means of genetic testing.

Good luck and let us know how it goes!

 

[okok]

I'm so sorry you have waited so long without any answers. It sounds really frustrating. Also i completely understand how frustrating family can be at times like this. I remember feeling so worried and confused, unsure of whether or not i should trust myself, and having everyone say "Oh she's fine. There is no way she has CF" which made me feel so much more confused and unsure of myself. It is so difficult to advocate for your child when you feel that way. Of course there is a possibility your child does not have CF, but the bottom line is that you need to find out whether or not your son has CF so you can get to the bottom of what is causing his health issues. No one should question that and whether or not your son actually has CF is irrelevant because either way the information you get from this test will be very helpful to figuring out what could be going on with his health.

As far as the sweat collection, i'm not sure how they could improve it, except i do think some sweat test methods (the coil method as opposed to filter paper method) may require less sweat in order to get a valid result. Other than that, i do know that sweat should be stimulated by pilocarpine ionotophoresis and that being well hydrated helps with getting enough sweat.

I'm sure you've read people's reccomedations to seek genetic testing. Is there some reason your doctor won't just order a genetic test while you are attempting to get enough sweat from the sweat test? (Ie insurance won't pay for it without sweat test results.) Also, as i am sure you are aware, false negatives and false positives are possible so if your son is protein malnourished (lab tests can determine this) and has a negative sweat test you will probably want to get genetic testing too. Also get genetic testing for anything above 30 since 23% of people with a sweat chloride above 30 have 2 CFTR mutations. Ambry or quest offer the most comprehensive genetic testing but not all insurance will cover it until they have exhausted other means of genetic testing.

Good luck and let us know how it goes!

 

[momja]

Okok- Thanks for responding so quickly. My son had the test done with the filter paper last time so maybe that's what will change. I'm not sure what's behind the reasoning on the Ped not ordering the genetic testing unless it is an insurance issue.
From what I understand about our insurance the Dr. must request the genetic test for it to be covered. Maybe she can only do that after exhausting other avenues which are exhausting me.....

I see her next week for another weight check and I will question why we can't just do a full panel right away. Children's Hospital stated they usually don't do that until after the sweat test as a follow up. The Ped seems to be on top of it but also seems to not have much experience with CF.
If I had to pay out of pocket for the genetic testing does anyone know what that runs?

 

[momja]

Okok- Thanks for responding so quickly. My son had the test done with the filter paper last time so maybe that's what will change. I'm not sure what's behind the reasoning on the Ped not ordering the genetic testing unless it is an insurance issue.
From what I understand about our insurance the Dr. must request the genetic test for it to be covered. Maybe she can only do that after exhausting other avenues which are exhausting me.....

I see her next week for another weight check and I will question why we can't just do a full panel right away. Children's Hospital stated they usually don't do that until after the sweat test as a follow up. The Ped seems to be on top of it but also seems to not have much experience with CF.
If I had to pay out of pocket for the genetic testing does anyone know what that runs?

 

[momja]

Okok- Thanks for responding so quickly. My son had the test done with the filter paper last time so maybe that's what will change. I'm not sure what's behind the reasoning on the Ped not ordering the genetic testing unless it is an insurance issue.
From what I understand about our insurance the Dr. must request the genetic test for it to be covered. Maybe she can only do that after exhausting other avenues which are exhausting me.....

I see her next week for another weight check and I will question why we can't just do a full panel right away. Children's Hospital stated they usually don't do that until after the sweat test as a follow up. The Ped seems to be on top of it but also seems to not have much experience with CF.
If I had to pay out of pocket for the genetic testing does anyone know what that runs?

 

[momja]

Okok- Thanks for responding so quickly. My son had the test done with the filter paper last time so maybe that's what will change. I'm not sure what's behind the reasoning on the Ped not ordering the genetic testing unless it is an insurance issue.
From what I understand about our insurance the Dr. must request the genetic test for it to be covered. Maybe she can only do that after exhausting other avenues which are exhausting me.....

I see her next week for another weight check and I will question why we can't just do a full panel right away. Children's Hospital stated they usually don't do that until after the sweat test as a follow up. The Ped seems to be on top of it but also seems to not have much experience with CF.
If I had to pay out of pocket for the genetic testing does anyone know what that runs?

 

[momja]

Okok- Thanks for responding so quickly. My son had the test done with the filter paper last time so maybe that's what will change. I'm not sure what's behind the reasoning on the Ped not ordering the genetic testing unless it is an insurance issue.
From what I understand about our insurance the Dr. must request the genetic test for it to be covered. Maybe she can only do that after exhausting other avenues which are exhausting me.....

I see her next week for another weight check and I will question why we can't just do a full panel right away. Children's Hospital stated they usually don't do that until after the sweat test as a follow up. The Ped seems to be on top of it but also seems to not have much experience with CF.
If I had to pay out of pocket for the genetic testing does anyone know what that runs?

 

[momja]

Okok- Thanks for responding so quickly. My son had the test done with the filter paper last time so maybe that's what will change. I'm not sure what's behind the reasoning on the Ped not ordering the genetic testing unless it is an insurance issue.
From what I understand about our insurance the Dr. must request the genetic test for it to be covered. Maybe she can only do that after exhausting other avenues which are exhausting me.....

I see her next week for another weight check and I will question why we can't just do a full panel right away. Children's Hospital stated they usually don't do that until after the sweat test as a follow up. The Ped seems to be on top of it but also seems to not have much experience with CF.
If I had to pay out of pocket for the genetic testing does anyone know what that runs?

 

[Ratatosk]

Ugh, I can remember comments from family members that DS doesn't look sick, can't have CF 'cuz there's no family history. Prior to test results coming back, my own husband was starting to treat me as if I had Munchhausen by Proxy and seemed to think I wanted DS to be sick for the attention. Grrr! Fortunately, the genetic blood test results came back within 5 days. During that time a sweat test came back normal (32).

Are you going to an accreditted CF facility? I guess I'd be concerned with the stool issue and failure to thrive -- that he's not getting enough nutrients. Have they done a fecal fat test (Stool) to see if he's malabsorbing?

 

[Ratatosk]

Ugh, I can remember comments from family members that DS doesn't look sick, can't have CF 'cuz there's no family history. Prior to test results coming back, my own husband was starting to treat me as if I had Munchhausen by Proxy and seemed to think I wanted DS to be sick for the attention. Grrr! Fortunately, the genetic blood test results came back within 5 days. During that time a sweat test came back normal (32).

Are you going to an accreditted CF facility? I guess I'd be concerned with the stool issue and failure to thrive -- that he's not getting enough nutrients. Have they done a fecal fat test (Stool) to see if he's malabsorbing?