Teenager with positive sweat test? What next?

H

H2OSPORTSMOM

New member
My son turned 18 on the 24 of March . A few weeks before he had two sweat tests , 64 and 57. We went this week for a PFT and CT Scans of his lungs and sinuses. I have suspected for a few years that something was wrong. He would get sick when he tryed to run continuously and he would get a headache and nauseated when he would go a long time without eating. The tests we had this week are for him to go to a local CF Center to see a doctor there. I have no idea what to expect. This is all new to us. Is there any one who has had a teenager diagnosed with possibly the same symptoms as my son? What does the PFT test reveal and why CT Scans? Oh I also have a new MD so not alot has been explained to us. My last MD would not listen to me when I asked him for the sweat test so I'm beginning a new relationship with another primary care doctor. It's like they take one look at my son and because he looks healthy they don't believe he could have CF. My last MD said he thought he had stomach migraines. However they are not with him when he is sick!! As his mother I have known something was not right for a few years now. My husband and I also have a daughter 20 who seems to be healthy. Do doctors usually test siblings when CF is discovered in one child? I just have alot of questions?? Can anyone help??
 
H

H2OSPORTSMOM

New member
My son turned 18 on the 24 of March . A few weeks before he had two sweat tests , 64 and 57. We went this week for a PFT and CT Scans of his lungs and sinuses. I have suspected for a few years that something was wrong. He would get sick when he tryed to run continuously and he would get a headache and nauseated when he would go a long time without eating. The tests we had this week are for him to go to a local CF Center to see a doctor there. I have no idea what to expect. This is all new to us. Is there any one who has had a teenager diagnosed with possibly the same symptoms as my son? What does the PFT test reveal and why CT Scans? Oh I also have a new MD so not alot has been explained to us. My last MD would not listen to me when I asked him for the sweat test so I'm beginning a new relationship with another primary care doctor. It's like they take one look at my son and because he looks healthy they don't believe he could have CF. My last MD said he thought he had stomach migraines. However they are not with him when he is sick!! As his mother I have known something was not right for a few years now. My husband and I also have a daughter 20 who seems to be healthy. Do doctors usually test siblings when CF is discovered in one child? I just have alot of questions?? Can anyone help??
 
H

H2OSPORTSMOM

New member
My son turned 18 on the 24 of March . A few weeks before he had two sweat tests , 64 and 57. We went this week for a PFT and CT Scans of his lungs and sinuses. I have suspected for a few years that something was wrong. He would get sick when he tryed to run continuously and he would get a headache and nauseated when he would go a long time without eating. The tests we had this week are for him to go to a local CF Center to see a doctor there. I have no idea what to expect. This is all new to us. Is there any one who has had a teenager diagnosed with possibly the same symptoms as my son? What does the PFT test reveal and why CT Scans? Oh I also have a new MD so not alot has been explained to us. My last MD would not listen to me when I asked him for the sweat test so I'm beginning a new relationship with another primary care doctor. It's like they take one look at my son and because he looks healthy they don't believe he could have CF. My last MD said he thought he had stomach migraines. However they are not with him when he is sick!! As his mother I have known something was not right for a few years now. My husband and I also have a daughter 20 who seems to be healthy. Do doctors usually test siblings when CF is discovered in one child? I just have alot of questions?? Can anyone help??
 
M

Mommafirst

Guest
My daughter is and was diagnosed as a baby. So I can't help with some of your questions, but there are several moms on the board who can. I just wanted to say I'm sorry that you just got this diagnosis, but that you should try and see the good side -- if he's gone 18 years without being diagnosed he must be doing very very well on his own, and now he'll get the right treatments to help him stay healthy. <br>
<br>
As for testing siblings, my CF team does routinely. Once they identified my daughters gene combination, they test my boys for those genes. They didn't bother with the sweat test because my daughter had borderline sweats and they figured that would just confuse things.<br>
<br>
Good for you getting a new doctor. It is sooo frustrating to read sooo many stories about doctors that just don't listen to the parents. We parents should never be made to feel that our instincts are faulty -- they are often dead on!!!
 
M

Mommafirst

Guest
My daughter is and was diagnosed as a baby. So I can't help with some of your questions, but there are several moms on the board who can. I just wanted to say I'm sorry that you just got this diagnosis, but that you should try and see the good side -- if he's gone 18 years without being diagnosed he must be doing very very well on his own, and now he'll get the right treatments to help him stay healthy. <br>
<br>
As for testing siblings, my CF team does routinely. Once they identified my daughters gene combination, they test my boys for those genes. They didn't bother with the sweat test because my daughter had borderline sweats and they figured that would just confuse things.<br>
<br>
Good for you getting a new doctor. It is sooo frustrating to read sooo many stories about doctors that just don't listen to the parents. We parents should never be made to feel that our instincts are faulty -- they are often dead on!!!
 
M

Mommafirst

Guest
My daughter is and was diagnosed as a baby. So I can't help with some of your questions, but there are several moms on the board who can. I just wanted to say I'm sorry that you just got this diagnosis, but that you should try and see the good side -- if he's gone 18 years without being diagnosed he must be doing very very well on his own, and now he'll get the right treatments to help him stay healthy. <br>
<br>
As for testing siblings, my CF team does routinely. Once they identified my daughters gene combination, they test my boys for those genes. They didn't bother with the sweat test because my daughter had borderline sweats and they figured that would just confuse things.<br>
<br>
Good for you getting a new doctor. It is sooo frustrating to read sooo many stories about doctors that just don't listen to the parents. We parents should never be made to feel that our instincts are faulty -- they are often dead on!!!
 
A

Alyssa

New member
They are looking for damage and function of the lungs with both the PFTs and CTs. The PFT's will give the docs information about how well the lungs are functioning -- how much air he can breath out quickly, and a bunch of other things -- but basically it give you a good idea of how the lungs are doing and will give them a baseline of where he is right now, so they know if later on he is getting better or worse (most everyone fluctuates a little from time to time) but it's something to watch -- good to see it go up (which it likely will if he gets started on some of the maintenance medications & treatments) or if the numbers steadily drop then they know they need to figure out why and do something about it. The CT will let them know if there has already been any damage to the lung tissue and the are probably looking for cysts and polyps in the sinuses.

<u>You can most likely expect a very long visit </u>-- most visits at a CF center take a couple of hours or more -- you see a lot of different people: the nurse, the doctor, the respiratory therapist, the social worker, the nutritionist...you stay in one room and they rotate in to see you. Then there are the various tests or labs to be done. They will take his height, weight, blood pressure, check his fingers for "clubbing", they will ask about his bowel movements, weight gain/loss. They will most likely get a throat culture (stick a long q-tip in the back of his throat for second, swab it around and remove it) Since he is 18 years old they may need to address the issue of possible sterility - most all men with CF also have CBAVD (congenital bilateral absence of the vas deferens) - which mean the tubes that carry the sperm out of the testicles are missing (they have the sperm - it just cannot get out)

Be sure to take a large note pad -- have your questions ready and also for taking notes on what they say - you will be given a lot of information -- it gets easier over time. Our first visit I tape recorded everything -- it made me feel better about not "missing" anything that was said.

Best wishes ! You have found a great website - keep reading and asking questions.
 
A

Alyssa

New member
They are looking for damage and function of the lungs with both the PFTs and CTs. The PFT's will give the docs information about how well the lungs are functioning -- how much air he can breath out quickly, and a bunch of other things -- but basically it give you a good idea of how the lungs are doing and will give them a baseline of where he is right now, so they know if later on he is getting better or worse (most everyone fluctuates a little from time to time) but it's something to watch -- good to see it go up (which it likely will if he gets started on some of the maintenance medications & treatments) or if the numbers steadily drop then they know they need to figure out why and do something about it. The CT will let them know if there has already been any damage to the lung tissue and the are probably looking for cysts and polyps in the sinuses.

<u>You can most likely expect a very long visit </u>-- most visits at a CF center take a couple of hours or more -- you see a lot of different people: the nurse, the doctor, the respiratory therapist, the social worker, the nutritionist...you stay in one room and they rotate in to see you. Then there are the various tests or labs to be done. They will take his height, weight, blood pressure, check his fingers for "clubbing", they will ask about his bowel movements, weight gain/loss. They will most likely get a throat culture (stick a long q-tip in the back of his throat for second, swab it around and remove it) Since he is 18 years old they may need to address the issue of possible sterility - most all men with CF also have CBAVD (congenital bilateral absence of the vas deferens) - which mean the tubes that carry the sperm out of the testicles are missing (they have the sperm - it just cannot get out)

Be sure to take a large note pad -- have your questions ready and also for taking notes on what they say - you will be given a lot of information -- it gets easier over time. Our first visit I tape recorded everything -- it made me feel better about not "missing" anything that was said.

Best wishes ! You have found a great website - keep reading and asking questions.
 
A

Alyssa

New member
They are looking for damage and function of the lungs with both the PFTs and CTs. The PFT's will give the docs information about how well the lungs are functioning -- how much air he can breath out quickly, and a bunch of other things -- but basically it give you a good idea of how the lungs are doing and will give them a baseline of where he is right now, so they know if later on he is getting better or worse (most everyone fluctuates a little from time to time) but it's something to watch -- good to see it go up (which it likely will if he gets started on some of the maintenance medications & treatments) or if the numbers steadily drop then they know they need to figure out why and do something about it. The CT will let them know if there has already been any damage to the lung tissue and the are probably looking for cysts and polyps in the sinuses.

<u>You can most likely expect a very long visit </u>-- most visits at a CF center take a couple of hours or more -- you see a lot of different people: the nurse, the doctor, the respiratory therapist, the social worker, the nutritionist...you stay in one room and they rotate in to see you. Then there are the various tests or labs to be done. They will take his height, weight, blood pressure, check his fingers for "clubbing", they will ask about his bowel movements, weight gain/loss. They will most likely get a throat culture (stick a long q-tip in the back of his throat for second, swab it around and remove it) Since he is 18 years old they may need to address the issue of possible sterility - most all men with CF also have CBAVD (congenital bilateral absence of the vas deferens) - which mean the tubes that carry the sperm out of the testicles are missing (they have the sperm - it just cannot get out)

Be sure to take a large note pad -- have your questions ready and also for taking notes on what they say - you will be given a lot of information -- it gets easier over time. Our first visit I tape recorded everything -- it made me feel better about not "missing" anything that was said.

Best wishes ! You have found a great website - keep reading and asking questions.
 
C

Childressj

New member
H20 sports mom,
I took my 13 yr old to the peds dr. on Thursday (we are still waiting for his ambry detection/deletion test to come back) and they also told me that he is having stomach migraines?????????????That was the first time I had ever heard it and then I saw that you had posted this...They gave him prevacid for the abdominal cramps and Migraine meds to take which make him dizzier that before. Trevor is also healthly looking but with Nausea, headaches, shortness of breath, stomach cramping, chronic sinusits, Asthma, the whole 9 yards.......His sweat tests were 47 and 39. btw-good info Alyssa....
 
C

Childressj

New member
H20 sports mom,
I took my 13 yr old to the peds dr. on Thursday (we are still waiting for his ambry detection/deletion test to come back) and they also told me that he is having stomach migraines?????????????That was the first time I had ever heard it and then I saw that you had posted this...They gave him prevacid for the abdominal cramps and Migraine meds to take which make him dizzier that before. Trevor is also healthly looking but with Nausea, headaches, shortness of breath, stomach cramping, chronic sinusits, Asthma, the whole 9 yards.......His sweat tests were 47 and 39. btw-good info Alyssa....
 
C

Childressj

New member
H20 sports mom,
I took my 13 yr old to the peds dr. on Thursday (we are still waiting for his ambry detection/deletion test to come back) and they also told me that he is having stomach migraines?????????????That was the first time I had ever heard it and then I saw that you had posted this...They gave him prevacid for the abdominal cramps and Migraine meds to take which make him dizzier that before. Trevor is also healthly looking but with Nausea, headaches, shortness of breath, stomach cramping, chronic sinusits, Asthma, the whole 9 yards.......His sweat tests were 47 and 39. btw-good info Alyssa....
 
H

H2OSPORTSMOM

New member
mommafirst and Alyssa thanks for your helpful infomation. I am sure I will have alot of questions in the future too. Childressj as far as the stomach migraines! I think my doctor used that as apossible diagnosis
because he didn't know why my son was getting sick when he would run. He always made me feel that I was trying to make my son play sports because I had a daughter who was a star 3 sport athlete at the same High School. My son will tell anyone that is not the case. He also told me one time that they had only one other case in his practice however they , everyone in the practice knew this kid well. He was insinuating that they did't know my son and that he might be drinking, smoking , etc. Needless to say the last time I have gone to this doctor was to ask to order the sweat test, he didn't he said I was crazy and that no one had every been diagnosed with CF at 17. It was only when I faxed him an E-mail conversation between me and a gentleman who had been diagnosed at age 19 that he called to say he had orered the test for me. I now have a new MD who is getting my PFT and CT's to the CF Center near us to see the doctor that my new online,diag. at 19 recommended. I don't know if stomach migraimes even exist?? I know he said that they were treated with anti-depresants. I never would buy the stomach migraines and ironnically there is no mention in his doc. visit notes about them. I got copies of all to take to my new doc. The only advice I can give you is always go with your instincts and motherly intuitions!!!!!!!!! If you need to show your doctor e-mails from others out there in the world do!! My friend whos email I used is the president of the CFroundtable and has been alot of help. I live in a small rural area. Doctors here have very lucrative businesses alot of people do not online research and treat them like God. They are not!!! In my state they are not required to do any continuing ed after they are licensed. I am a cosmetologist and my husband a used car dealer. The state requires us to have 8 hrs. a year continuing education. My last doc needs a few years cont. ed.! The Merk Manual changes every day. We are in an age of technology right at our finger tips and medical research changes medical history everyday, If some of these docs would just visit web site like this one they would know that alot of them are getting it wrong. Make your doctor listen if he does't get one that will !! I am still waiting to get in at the CF Center and I am taking my notebook, recorder and anything else I need. We must be an advocate for our families when It comes to their health ! After God my husband and two precious children are my life! I will move mountains if need be to see that they get what they need!! Anyone reading.... you can do the same!!!!! God bless this web-site and every name and family associated with it!!
 
H

H2OSPORTSMOM

New member
mommafirst and Alyssa thanks for your helpful infomation. I am sure I will have alot of questions in the future too. Childressj as far as the stomach migraines! I think my doctor used that as apossible diagnosis
because he didn't know why my son was getting sick when he would run. He always made me feel that I was trying to make my son play sports because I had a daughter who was a star 3 sport athlete at the same High School. My son will tell anyone that is not the case. He also told me one time that they had only one other case in his practice however they , everyone in the practice knew this kid well. He was insinuating that they did't know my son and that he might be drinking, smoking , etc. Needless to say the last time I have gone to this doctor was to ask to order the sweat test, he didn't he said I was crazy and that no one had every been diagnosed with CF at 17. It was only when I faxed him an E-mail conversation between me and a gentleman who had been diagnosed at age 19 that he called to say he had orered the test for me. I now have a new MD who is getting my PFT and CT's to the CF Center near us to see the doctor that my new online,diag. at 19 recommended. I don't know if stomach migraimes even exist?? I know he said that they were treated with anti-depresants. I never would buy the stomach migraines and ironnically there is no mention in his doc. visit notes about them. I got copies of all to take to my new doc. The only advice I can give you is always go with your instincts and motherly intuitions!!!!!!!!! If you need to show your doctor e-mails from others out there in the world do!! My friend whos email I used is the president of the CFroundtable and has been alot of help. I live in a small rural area. Doctors here have very lucrative businesses alot of people do not online research and treat them like God. They are not!!! In my state they are not required to do any continuing ed after they are licensed. I am a cosmetologist and my husband a used car dealer. The state requires us to have 8 hrs. a year continuing education. My last doc needs a few years cont. ed.! The Merk Manual changes every day. We are in an age of technology right at our finger tips and medical research changes medical history everyday, If some of these docs would just visit web site like this one they would know that alot of them are getting it wrong. Make your doctor listen if he does't get one that will !! I am still waiting to get in at the CF Center and I am taking my notebook, recorder and anything else I need. We must be an advocate for our families when It comes to their health ! After God my husband and two precious children are my life! I will move mountains if need be to see that they get what they need!! Anyone reading.... you can do the same!!!!! God bless this web-site and every name and family associated with it!!
 
H

H2OSPORTSMOM

New member
mommafirst and Alyssa thanks for your helpful infomation. I am sure I will have alot of questions in the future too. Childressj as far as the stomach migraines! I think my doctor used that as apossible diagnosis
because he didn't know why my son was getting sick when he would run. He always made me feel that I was trying to make my son play sports because I had a daughter who was a star 3 sport athlete at the same High School. My son will tell anyone that is not the case. He also told me one time that they had only one other case in his practice however they , everyone in the practice knew this kid well. He was insinuating that they did't know my son and that he might be drinking, smoking , etc. Needless to say the last time I have gone to this doctor was to ask to order the sweat test, he didn't he said I was crazy and that no one had every been diagnosed with CF at 17. It was only when I faxed him an E-mail conversation between me and a gentleman who had been diagnosed at age 19 that he called to say he had orered the test for me. I now have a new MD who is getting my PFT and CT's to the CF Center near us to see the doctor that my new online,diag. at 19 recommended. I don't know if stomach migraimes even exist?? I know he said that they were treated with anti-depresants. I never would buy the stomach migraines and ironnically there is no mention in his doc. visit notes about them. I got copies of all to take to my new doc. The only advice I can give you is always go with your instincts and motherly intuitions!!!!!!!!! If you need to show your doctor e-mails from others out there in the world do!! My friend whos email I used is the president of the CFroundtable and has been alot of help. I live in a small rural area. Doctors here have very lucrative businesses alot of people do not online research and treat them like God. They are not!!! In my state they are not required to do any continuing ed after they are licensed. I am a cosmetologist and my husband a used car dealer. The state requires us to have 8 hrs. a year continuing education. My last doc needs a few years cont. ed.! The Merk Manual changes every day. We are in an age of technology right at our finger tips and medical research changes medical history everyday, If some of these docs would just visit web site like this one they would know that alot of them are getting it wrong. Make your doctor listen if he does't get one that will !! I am still waiting to get in at the CF Center and I am taking my notebook, recorder and anything else I need. We must be an advocate for our families when It comes to their health ! After God my husband and two precious children are my life! I will move mountains if need be to see that they get what they need!! Anyone reading.... you can do the same!!!!! God bless this web-site and every name and family associated with it!!
 
H

H2OSPORTSMOM

New member
Hello everyone ,
I just wanted to give you an update . My son went to CF Center on May 10. Another sweat test was done and was a 55. His lungs are great however his sinuses look like a CF patients might look. We are now doing some genetic tests. We go draw blood tomorrow. The doctor however said because the lungs were so good that he does not think he has CF. I still think as his mother something is wrong. I feel he might have a very mild case . Even to the point that he does not have severe pancreatic issues, but some malabsoption to the point he stays hungry, and dehydrates easy, but not to the point of severe malnurishment. He is very heathy looking which is what throws the doctors off the minute they look at him. Does any one else out there shake bad or have tremors of the hands? my son does and the CF doc said it was not a symptom of CF. However vitamin E malabsorption over a long period of time can cause neurologic symptoms(Merck Manual). I am anxious to see what the blood work shows us . What other condition could had sweat tests of 64,57 and 55?
 
H

H2OSPORTSMOM

New member
Hello everyone ,
I just wanted to give you an update . My son went to CF Center on May 10. Another sweat test was done and was a 55. His lungs are great however his sinuses look like a CF patients might look. We are now doing some genetic tests. We go draw blood tomorrow. The doctor however said because the lungs were so good that he does not think he has CF. I still think as his mother something is wrong. I feel he might have a very mild case . Even to the point that he does not have severe pancreatic issues, but some malabsoption to the point he stays hungry, and dehydrates easy, but not to the point of severe malnurishment. He is very heathy looking which is what throws the doctors off the minute they look at him. Does any one else out there shake bad or have tremors of the hands? my son does and the CF doc said it was not a symptom of CF. However vitamin E malabsorption over a long period of time can cause neurologic symptoms(Merck Manual). I am anxious to see what the blood work shows us . What other condition could had sweat tests of 64,57 and 55?
 
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