Hello, I have been reading alot on here for the past week. My daughter is 15 and has been fighting chronic severe sinus disease with recurrent polyps for the past few years.Very large polyps, that take up whole areas of her sinuses. She has had 2 surgeries in the past year and a half, the last one on 12/30. And it only worked for 3 weeks, now she already has polyps again. She has asthma that flares up from the sinus issues, been having to use her inhaler daily. She has GI problems that nobody can explain. Nausea, vomiting, abdominal pain(upper left quadrant). She has been through all the allergy testing twice, they were all negative. Yet her ENT still insists it has to be allergies! We did just find out that her IgG levels are a little low. But the allergist said it was nothing to worry about, and it must just be allergies cause he didnt know what else could be causing all her problems. After I threw a fit and insisted on a second opinion, we were sent to an immunologist at Madera Childrens Hospital. When we went to the immunologist he asked about her whole history, and asked if she had been tested for CF. So he ordered a sweat test and we had it done yesterday. But Im concerned that that is not enough, after everything I am reading on here. Her results were 25 and 26. But with all her symptoms, should I insist on genetic testing? Someone needs to figure this out, they cant just keep doing surgery every year, while shes miserable in between! Sorry this is so long, I just dont know what to do anymore. Any advice would be greatly appreciated. Thanks
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New Here...Question about sweat test?
- Thread starter Mom2Bri
- Start date
Hello, I have been reading alot on here for the past week. My daughter is 15 and has been fighting chronic severe sinus disease with recurrent polyps for the past few years.Very large polyps, that take up whole areas of her sinuses. She has had 2 surgeries in the past year and a half, the last one on 12/30. And it only worked for 3 weeks, now she already has polyps again. She has asthma that flares up from the sinus issues, been having to use her inhaler daily. She has GI problems that nobody can explain. Nausea, vomiting, abdominal pain(upper left quadrant). She has been through all the allergy testing twice, they were all negative. Yet her ENT still insists it has to be allergies! We did just find out that her IgG levels are a little low. But the allergist said it was nothing to worry about, and it must just be allergies cause he didnt know what else could be causing all her problems. After I threw a fit and insisted on a second opinion, we were sent to an immunologist at Madera Childrens Hospital. When we went to the immunologist he asked about her whole history, and asked if she had been tested for CF. So he ordered a sweat test and we had it done yesterday. But Im concerned that that is not enough, after everything I am reading on here. Her results were 25 and 26. But with all her symptoms, should I insist on genetic testing? Someone needs to figure this out, they cant just keep doing surgery every year, while shes miserable in between! Sorry this is so long, I just dont know what to do anymore. Any advice would be greatly appreciated. Thanks
Hello, I have been reading alot on here for the past week. My daughter is 15 and has been fighting chronic severe sinus disease with recurrent polyps for the past few years.Very large polyps, that take up whole areas of her sinuses. She has had 2 surgeries in the past year and a half, the last one on 12/30. And it only worked for 3 weeks, now she already has polyps again. She has asthma that flares up from the sinus issues, been having to use her inhaler daily. She has GI problems that nobody can explain. Nausea, vomiting, abdominal pain(upper left quadrant). She has been through all the allergy testing twice, they were all negative. Yet her ENT still insists it has to be allergies! We did just find out that her IgG levels are a little low. But the allergist said it was nothing to worry about, and it must just be allergies cause he didnt know what else could be causing all her problems. After I threw a fit and insisted on a second opinion, we were sent to an immunologist at Madera Childrens Hospital. When we went to the immunologist he asked about her whole history, and asked if she had been tested for CF. So he ordered a sweat test and we had it done yesterday. But Im concerned that that is not enough, after everything I am reading on here. Her results were 25 and 26. But with all her symptoms, should I insist on genetic testing? Someone needs to figure this out, they cant just keep doing surgery every year, while shes miserable in between! Sorry this is so long, I just dont know what to do anymore. Any advice would be greatly appreciated. Thanks
M
Mommafirst
Guest
I don't really know a lot about adult diagnoses, but I would think that getting genetics done would make sense since you really can't rule out CF with a sweat test alone, especially in light of all the symptoms.
Good luck!! Get a referral to an accredited CF center to follow the testing -- sweat tests are faulty if done at other labs.
Good luck!! Get a referral to an accredited CF center to follow the testing -- sweat tests are faulty if done at other labs.
M
Mommafirst
Guest
I don't really know a lot about adult diagnoses, but I would think that getting genetics done would make sense since you really can't rule out CF with a sweat test alone, especially in light of all the symptoms.
Good luck!! Get a referral to an accredited CF center to follow the testing -- sweat tests are faulty if done at other labs.
Good luck!! Get a referral to an accredited CF center to follow the testing -- sweat tests are faulty if done at other labs.
M
Mommafirst
Guest
I don't really know a lot about adult diagnoses, but I would think that getting genetics done would make sense since you really can't rule out CF with a sweat test alone, especially in light of all the symptoms.
<br />
<br />Good luck!! Get a referral to an accredited CF center to follow the testing -- sweat tests are faulty if done at other labs.
<br />
<br />Good luck!! Get a referral to an accredited CF center to follow the testing -- sweat tests are faulty if done at other labs.
Sweat tests are just unreliable. Also, was it done at an accredited CF center? It really does make a difference. With those symptoms, I think you should insist on the full panel Ambry test.
My son was dx at 15. I'd been told his entire life that it was just allergies & asthma. I hope you find the answers you need to help your child.
Stacey
My son was dx at 15. I'd been told his entire life that it was just allergies & asthma. I hope you find the answers you need to help your child.
Stacey
Sweat tests are just unreliable. Also, was it done at an accredited CF center? It really does make a difference. With those symptoms, I think you should insist on the full panel Ambry test.
My son was dx at 15. I'd been told his entire life that it was just allergies & asthma. I hope you find the answers you need to help your child.
Stacey
My son was dx at 15. I'd been told his entire life that it was just allergies & asthma. I hope you find the answers you need to help your child.
Stacey
Sweat tests are just unreliable. Also, was it done at an accredited CF center? It really does make a difference. With those symptoms, I think you should insist on the full panel Ambry test.
<br />
<br />My son was dx at 15. I'd been told his entire life that it was just allergies & asthma. I hope you find the answers you need to help your child.
<br />
<br />Stacey
<br />
<br />
<br />
<br />My son was dx at 15. I'd been told his entire life that it was just allergies & asthma. I hope you find the answers you need to help your child.
<br />
<br />Stacey
<br />
<br />
Thank you for the replies. I think it is an accredited CF center. Im getting different answers on that. When they did the test my daughter also had a reaction to the chemicals they used(instant itchy rash), the lady said shed never seen anyone react like that in her sixteen years. And she also said shed never seen anyone sweat as much as her. Then she only left the stimulators on for half the time because of the reaction. So obviously that makes me question whether the test was completely accurate or not.
Thank you for the replies. I think it is an accredited CF center. Im getting different answers on that. When they did the test my daughter also had a reaction to the chemicals they used(instant itchy rash), the lady said shed never seen anyone react like that in her sixteen years. And she also said shed never seen anyone sweat as much as her. Then she only left the stimulators on for half the time because of the reaction. So obviously that makes me question whether the test was completely accurate or not.
Thank you for the replies. I think it is an accredited CF center. Im getting different answers on that. When they did the test my daughter also had a reaction to the chemicals they used(instant itchy rash), the lady said shed never seen anyone react like that in her sixteen years. And she also said shed never seen anyone sweat as much as her. Then she only left the stimulators on for half the time because of the reaction. So obviously that makes me question whether the test was completely accurate or not.
antonette1279
New member
Hello there!! Well I don't know if I can be of much help but my son who is only 6 months old is going through all this now. He had a "normal" sweat test and an inconclusive genetic testing and his doctor does still feel he has a rare form of CF. He has been sick since he was 2 weeks old and always in the hospital (we are there with him now as I type) He has chronic congestion, low weight gain, loose stool, fussy all the time, doesn't sleep, eats like a little pig, and always has a cough with secretions. They do suction him when he is in the hospital. I would not go by the sweat test alone. The fact that they stopped it early may still give you accurate results as long as they got enough sweat which they measure for. I wish you the best..Trust me I know how frustrating it is not to know what is wrong with your child. I am going through hell with our son and his problems. Good luck to you again
antonette1279
New member
Hello there!! Well I don't know if I can be of much help but my son who is only 6 months old is going through all this now. He had a "normal" sweat test and an inconclusive genetic testing and his doctor does still feel he has a rare form of CF. He has been sick since he was 2 weeks old and always in the hospital (we are there with him now as I type) He has chronic congestion, low weight gain, loose stool, fussy all the time, doesn't sleep, eats like a little pig, and always has a cough with secretions. They do suction him when he is in the hospital. I would not go by the sweat test alone. The fact that they stopped it early may still give you accurate results as long as they got enough sweat which they measure for. I wish you the best..Trust me I know how frustrating it is not to know what is wrong with your child. I am going through hell with our son and his problems. Good luck to you again
antonette1279
New member
Hello there!! Well I don't know if I can be of much help but my son who is only 6 months old is going through all this now. He had a "normal" sweat test and an inconclusive genetic testing and his doctor does still feel he has a rare form of CF. He has been sick since he was 2 weeks old and always in the hospital (we are there with him now as I type) He has chronic congestion, low weight gain, loose stool, fussy all the time, doesn't sleep, eats like a little pig, and always has a cough with secretions. They do suction him when he is in the hospital. I would not go by the sweat test alone. The fact that they stopped it early may still give you accurate results as long as they got enough sweat which they measure for. I wish you the best..Trust me I know how frustrating it is not to know what is wrong with your child. I am going through hell with our son and his problems. Good luck to you again
Thank you. I am so sorry you are having to go through so much with your son too, I hope you find some answers soon. It is definitely one of the worst feelings in the world not knowing how to help your child. My daughter had some of those symptoms as a baby, I just didnt realize at the time what it could be. I am definitely going to push for the full genetic tests. Good luck to you also, I hope your son gets out of the hospital soon.
Thank you. I am so sorry you are having to go through so much with your son too, I hope you find some answers soon. It is definitely one of the worst feelings in the world not knowing how to help your child. My daughter had some of those symptoms as a baby, I just didnt realize at the time what it could be. I am definitely going to push for the full genetic tests. Good luck to you also, I hope your son gets out of the hospital soon.