13 year old Boy-can some one help me?

[Childressj]

WOW! I am so glad that I found this site, everyone seems so nice and helpful. The blog that I read about the tow teenagers really moved me. I have been kin of living day to day thinking well he can't really have CF cause he is 13 not a baby. Boy, I guess that is the wrong way to think. Trevor has always had sinus problems since bith, he is always on an antibotic of somewort and the usual doses never seem to work for him. He was diagnosed with RAD when he was 4 and has been treated for with Albuterol and Singulair everyday since. He was hospitalized for a week when he was 10 for a gastrointestinal disease that they never could figure out and then a year later they did a colonoscopy and saw what they saw was the beginnings of chrons so they treated him with a strong steroid that gave him a host of other symtoms. HE really is generally healthy except for trouble breathing and all these sinus infections. So the Doc last week said "lets just do a sweat test" I said what could it hurt. He got a 47 which is borderline, I thought that has to be wrong but they immediately ordered the genetics testing and another sweat test which he scored a 39. We are still awaiting the genetic testing to come back. I finally broke down and told immediate family about it, but they are all very skeptical about it. What is your advice? Thanks for any reqponses.

 

[Childressj]

WOW! I am so glad that I found this site, everyone seems so nice and helpful. The blog that I read about the tow teenagers really moved me. I have been kin of living day to day thinking well he can't really have CF cause he is 13 not a baby. Boy, I guess that is the wrong way to think. Trevor has always had sinus problems since bith, he is always on an antibotic of somewort and the usual doses never seem to work for him. He was diagnosed with RAD when he was 4 and has been treated for with Albuterol and Singulair everyday since. He was hospitalized for a week when he was 10 for a gastrointestinal disease that they never could figure out and then a year later they did a colonoscopy and saw what they saw was the beginnings of chrons so they treated him with a strong steroid that gave him a host of other symtoms. HE really is generally healthy except for trouble breathing and all these sinus infections. So the Doc last week said "lets just do a sweat test" I said what could it hurt. He got a 47 which is borderline, I thought that has to be wrong but they immediately ordered the genetics testing and another sweat test which he scored a 39. We are still awaiting the genetic testing to come back. I finally broke down and told immediate family about it, but they are all very skeptical about it. What is your advice? Thanks for any reqponses.

 

[Childressj]

WOW! I am so glad that I found this site, everyone seems so nice and helpful. The blog that I read about the tow teenagers really moved me. I have been kin of living day to day thinking well he can't really have CF cause he is 13 not a baby. Boy, I guess that is the wrong way to think. Trevor has always had sinus problems since bith, he is always on an antibotic of somewort and the usual doses never seem to work for him. He was diagnosed with RAD when he was 4 and has been treated for with Albuterol and Singulair everyday since. He was hospitalized for a week when he was 10 for a gastrointestinal disease that they never could figure out and then a year later they did a colonoscopy and saw what they saw was the beginnings of chrons so they treated him with a strong steroid that gave him a host of other symtoms. HE really is generally healthy except for trouble breathing and all these sinus infections. So the Doc last week said "lets just do a sweat test" I said what could it hurt. He got a 47 which is borderline, I thought that has to be wrong but they immediately ordered the genetics testing and another sweat test which he scored a 39. We are still awaiting the genetic testing to come back. I finally broke down and told immediate family about it, but they are all very skeptical about it. What is your advice? Thanks for any reqponses.

 

[NoExcuses]

Genetic tests are the way to go. Sweat tests are outdated and leave too much room for error.

Make sure the genetic test was a full panel Ambry genetic panel that tests for 1500 genes. Then you'll get your answer

 

[NoExcuses]

Genetic tests are the way to go. Sweat tests are outdated and leave too much room for error.

Make sure the genetic test was a full panel Ambry genetic panel that tests for 1500 genes. Then you'll get your answer

 

[NoExcuses]

Genetic tests are the way to go. Sweat tests are outdated and leave too much room for error.

Make sure the genetic test was a full panel Ambry genetic panel that tests for 1500 genes. Then you'll get your answer

 

[Childressj]

I have no clue if it was a full panel or not, they gave me an Ambry box with 1 vile in it for the blodd and I ignorantly just went and had the blood drawn and am now awiting the test results.

 

[Childressj]

I have no clue if it was a full panel or not, they gave me an Ambry box with 1 vile in it for the blodd and I ignorantly just went and had the blood drawn and am now awiting the test results.

 

[Childressj]

I have no clue if it was a full panel or not, they gave me an Ambry box with 1 vile in it for the blodd and I ignorantly just went and had the blood drawn and am now awiting the test results.

 

[ktsmom]

I'm sorry that your family is not quite ready to jump on board with you. This is not uncommon and hopefully will change. I wonder if you can call Ambry and ask them which tests they are doing (I'm assuming you sent it to them failry recently?) I've looked at the form and you check which level of testing you want. You took the kit to the lab and handled the sample yourself. Interesting. Probably your doc checked the box on the form.

Anway, if you are asking advice as to "does anyone else think it is CF", it could be, even diagnosed this late. If it is, your son will get the treatment he needs and will feel much better. Keep posting your questions. Lots more folks will jump on here with more helpful advice. Hoping for the best for you and your son. Let us know.

 

[ktsmom]

I'm sorry that your family is not quite ready to jump on board with you. This is not uncommon and hopefully will change. I wonder if you can call Ambry and ask them which tests they are doing (I'm assuming you sent it to them failry recently?) I've looked at the form and you check which level of testing you want. You took the kit to the lab and handled the sample yourself. Interesting. Probably your doc checked the box on the form.

Anway, if you are asking advice as to "does anyone else think it is CF", it could be, even diagnosed this late. If it is, your son will get the treatment he needs and will feel much better. Keep posting your questions. Lots more folks will jump on here with more helpful advice. Hoping for the best for you and your son. Let us know.

 

[ktsmom]

I'm sorry that your family is not quite ready to jump on board with you. This is not uncommon and hopefully will change. I wonder if you can call Ambry and ask them which tests they are doing (I'm assuming you sent it to them failry recently?) I've looked at the form and you check which level of testing you want. You took the kit to the lab and handled the sample yourself. Interesting. Probably your doc checked the box on the form.

Anway, if you are asking advice as to "does anyone else think it is CF", it could be, even diagnosed this late. If it is, your son will get the treatment he needs and will feel much better. Keep posting your questions. Lots more folks will jump on here with more helpful advice. Hoping for the best for you and your son. Let us know.

 

[Mommafirst]

I don't know that I have much advice. But it does sound like you are finally going to get some answers! A diagnosis won't change him or his illness, but the care he'll get may really help make a difference. My daughter was only 5 months at diagnosis, with a suspicion of CF from birth, and still I have family that have trouble accepting the diagnosis. It is frustrating, but give them time, everyone wraps their head around this all in their own way. I hope they can at least find a way to be supportive to you in this time of diagnosis. Good luck and welcome to the forum.

 

[Mommafirst]

I don't know that I have much advice. But it does sound like you are finally going to get some answers! A diagnosis won't change him or his illness, but the care he'll get may really help make a difference. My daughter was only 5 months at diagnosis, with a suspicion of CF from birth, and still I have family that have trouble accepting the diagnosis. It is frustrating, but give them time, everyone wraps their head around this all in their own way. I hope they can at least find a way to be supportive to you in this time of diagnosis. Good luck and welcome to the forum.

 

[Mommafirst]

I don't know that I have much advice. But it does sound like you are finally going to get some answers! A diagnosis won't change him or his illness, but the care he'll get may really help make a difference. My daughter was only 5 months at diagnosis, with a suspicion of CF from birth, and still I have family that have trouble accepting the diagnosis. It is frustrating, but give them time, everyone wraps their head around this all in their own way. I hope they can at least find a way to be supportive to you in this time of diagnosis. Good luck and welcome to the forum.

 

[Samsmom]

to Childress, I know how you must feel about the uncertainty of your son's health. My daughter was diagnosed at 12, so it can happen. I too am wondering if it could be something else, though I am pretty confident that she had CF, but I think there is more. Genetics will tell the tell, so now it is a wainting game. I'm sorry that your family is skeptical, but that is a defense that most people use especially when the diagnosis is not final yet. Most of my family believes my daughter's diagnosis, but they don't aknowledge her disease. They choose to put ther head in the sand and pretend it isin't there. I have been reading on this site for months, and finally decided to post a reply to someone, and just today I started a new topic. I think the support and understanding of people here is wonderful!!! I hope to make many friends here to keep for a lifetime. Good luck to you and your son.

 

[Samsmom]

to Childress, I know how you must feel about the uncertainty of your son's health. My daughter was diagnosed at 12, so it can happen. I too am wondering if it could be something else, though I am pretty confident that she had CF, but I think there is more. Genetics will tell the tell, so now it is a wainting game. I'm sorry that your family is skeptical, but that is a defense that most people use especially when the diagnosis is not final yet. Most of my family believes my daughter's diagnosis, but they don't aknowledge her disease. They choose to put ther head in the sand and pretend it isin't there. I have been reading on this site for months, and finally decided to post a reply to someone, and just today I started a new topic. I think the support and understanding of people here is wonderful!!! I hope to make many friends here to keep for a lifetime. Good luck to you and your son.

 

[Samsmom]

to Childress, I know how you must feel about the uncertainty of your son's health. My daughter was diagnosed at 12, so it can happen. I too am wondering if it could be something else, though I am pretty confident that she had CF, but I think there is more. Genetics will tell the tell, so now it is a wainting game. I'm sorry that your family is skeptical, but that is a defense that most people use especially when the diagnosis is not final yet. Most of my family believes my daughter's diagnosis, but they don't aknowledge her disease. They choose to put ther head in the sand and pretend it isin't there. I have been reading on this site for months, and finally decided to post a reply to someone, and just today I started a new topic. I think the support and understanding of people here is wonderful!!! I hope to make many friends here to keep for a lifetime. Good luck to you and your son.

 

[Childressj]

Thanks for all of your responses. Wow-everyone is so nice. I printed out several stories that you guys wrote out and gave them to family members (who are computer iliterate-yes there are still some of those) Hopefully that will help.
About the Testing: I had to go to a specialist office down the road from my work (I work at the office with my son's pediatrician) and pick up the testing kit, it was purple and they handed me a sheet of paper to go with it, that had his sweat test levels and several diagnosis that he has had and it had one vial in it. We will find out soon, they told me three weeks.
honestly, at this point I just want him to feel better and not be in pain from the cramps and breathing problems, he has gotten so used to the sinus problems now that we have antibiotics on hand at all times. The steroids that they put him on for Chrons stunted his puperty a little so he has finally started to grow a little and he is so excited to be a little taller but he has always been healthy looking to me. I have been wondering recently why a sweat test was not ordered when we were seeing all those allergy and asthma specialist when he was 5. It concerns me that I was not more educated in this. I guess I am frustrated because I want answers and the waiting is terrible.
also, I have noticed that he looks real sweaty (almost greasy) constantly....is that part of this or am I just seeing stuff that is not there.
Thanks to everyone for being supportive and I'll keep everyone posted.

 

[Childressj]

Thanks for all of your responses. Wow-everyone is so nice. I printed out several stories that you guys wrote out and gave them to family members (who are computer iliterate-yes there are still some of those) Hopefully that will help.
About the Testing: I had to go to a specialist office down the road from my work (I work at the office with my son's pediatrician) and pick up the testing kit, it was purple and they handed me a sheet of paper to go with it, that had his sweat test levels and several diagnosis that he has had and it had one vial in it. We will find out soon, they told me three weeks.
honestly, at this point I just want him to feel better and not be in pain from the cramps and breathing problems, he has gotten so used to the sinus problems now that we have antibiotics on hand at all times. The steroids that they put him on for Chrons stunted his puperty a little so he has finally started to grow a little and he is so excited to be a little taller but he has always been healthy looking to me. I have been wondering recently why a sweat test was not ordered when we were seeing all those allergy and asthma specialist when he was 5. It concerns me that I was not more educated in this. I guess I am frustrated because I want answers and the waiting is terrible.
also, I have noticed that he looks real sweaty (almost greasy) constantly....is that part of this or am I just seeing stuff that is not there.
Thanks to everyone for being supportive and I'll keep everyone posted.