13 year old Boy-can some one help me?

Childressj · Mar 9, 2007

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.

Samsmom · Mar 10, 2007

Hang in there until you get your answers. If it does turn out that your son has CF then look at it as an opportunity to finally treat the real problem. I am learning that each cf patient is unique and that while the disease has many typical symptoms, some are not so typical and even down right odd. My daughter has this smell about her, not a bad smell, just different. I have questioned all the docs. about it and have been told that it is probably related to the cf and the mucous and other imbalances. Your sons sweaty/greasy apperance could be related to cf or maybe due to hormone changes caused by puberty. It is frustrating that medical professionals don't look furthur in small children for potential problems. I was so angry when we got our daughter's diagnosis as age 12 and not sooner. Especially when I told everyone there was something wrong from her birth. If it does turn out that your son has cf you can feel confident that this site will be here for you and even for your son or whoever needs it. My daughter ventured on tonight with my help for the first time and was surprised to talk to other kids her age with her disease, there aren't any others in her school or even in our community that we know of, but we're looking!!! Hope your wait isin't too long. Keep us posted and best wishes to you.

Samsmom · Mar 10, 2007

Hang in there until you get your answers. If it does turn out that your son has CF then look at it as an opportunity to finally treat the real problem. I am learning that each cf patient is unique and that while the disease has many typical symptoms, some are not so typical and even down right odd. My daughter has this smell about her, not a bad smell, just different. I have questioned all the docs. about it and have been told that it is probably related to the cf and the mucous and other imbalances. Your sons sweaty/greasy apperance could be related to cf or maybe due to hormone changes caused by puberty. It is frustrating that medical professionals don't look furthur in small children for potential problems. I was so angry when we got our daughter's diagnosis as age 12 and not sooner. Especially when I told everyone there was something wrong from her birth. If it does turn out that your son has cf you can feel confident that this site will be here for you and even for your son or whoever needs it. My daughter ventured on tonight with my help for the first time and was surprised to talk to other kids her age with her disease, there aren't any others in her school or even in our community that we know of, but we're looking!!! Hope your wait isin't too long. Keep us posted and best wishes to you.

Samsmom · Mar 10, 2007

Hang in there until you get your answers. If it does turn out that your son has CF then look at it as an opportunity to finally treat the real problem. I am learning that each cf patient is unique and that while the disease has many typical symptoms, some are not so typical and even down right odd. My daughter has this smell about her, not a bad smell, just different. I have questioned all the docs. about it and have been told that it is probably related to the cf and the mucous and other imbalances. Your sons sweaty/greasy apperance could be related to cf or maybe due to hormone changes caused by puberty. It is frustrating that medical professionals don't look furthur in small children for potential problems. I was so angry when we got our daughter's diagnosis as age 12 and not sooner. Especially when I told everyone there was something wrong from her birth. If it does turn out that your son has cf you can feel confident that this site will be here for you and even for your son or whoever needs it. My daughter ventured on tonight with my help for the first time and was surprised to talk to other kids her age with her disease, there aren't any others in her school or even in our community that we know of, but we're looking!!! Hope your wait isin't too long. Keep us posted and best wishes to you.

ddawes27 · Mar 10, 2007

Childress J, My son was diagnosed in November of 2006. He had sinus infections, one after another. He was sent to an ENT specialist and then sent for sweat testing and was positive for CF. At that time he was skin and bones........but he has food issues.... only eats certain foods.....(very picky).......those foods though, he ate like a pig.......with no weight gain. He complained of tummy aches all the time. His pulmonoligist started him on enzymes, plus the preventative breathing treatments.. My son is 5 and is always talking about things he can smell now. I believe his eating issues stem from not tasting anything........and not enjoying the taste of something because all he had to base the sense on, was texture.
Anyways.......if your little honey has it, (I wish Not)......Be sure to find the CF center in your area to get the best treatment...........I live in FL and my nearest treatment center is 175 miles away from my home...........well worth the drive!!.....from my stand point anyways!
Good luck!

ddawes27 · Mar 10, 2007

Childress J, My son was diagnosed in November of 2006. He had sinus infections, one after another. He was sent to an ENT specialist and then sent for sweat testing and was positive for CF. At that time he was skin and bones........but he has food issues.... only eats certain foods.....(very picky).......those foods though, he ate like a pig.......with no weight gain. He complained of tummy aches all the time. His pulmonoligist started him on enzymes, plus the preventative breathing treatments.. My son is 5 and is always talking about things he can smell now. I believe his eating issues stem from not tasting anything........and not enjoying the taste of something because all he had to base the sense on, was texture.
Anyways.......if your little honey has it, (I wish Not)......Be sure to find the CF center in your area to get the best treatment...........I live in FL and my nearest treatment center is 175 miles away from my home...........well worth the drive!!.....from my stand point anyways!
Good luck!

ddawes27 · Mar 10, 2007

Childress J, My son was diagnosed in November of 2006. He had sinus infections, one after another. He was sent to an ENT specialist and then sent for sweat testing and was positive for CF. At that time he was skin and bones........but he has food issues.... only eats certain foods.....(very picky).......those foods though, he ate like a pig.......with no weight gain. He complained of tummy aches all the time. His pulmonoligist started him on enzymes, plus the preventative breathing treatments.. My son is 5 and is always talking about things he can smell now. I believe his eating issues stem from not tasting anything........and not enjoying the taste of something because all he had to base the sense on, was texture.
Anyways.......if your little honey has it, (I wish Not)......Be sure to find the CF center in your area to get the best treatment...........I live in FL and my nearest treatment center is 175 miles away from my home...........well worth the drive!!.....from my stand point anyways!
Good luck!

Alyssa · Mar 11, 2007

Jennifer,

I think my blog is the one you are referencing

I agree with whoever said to call Ambry and ask them what test is being done -- There is also an Ambry representative on the website here that you can ask questions of too. I've never heard of a mother who was put in charge of carrying around a test kit -- why did they ask you to do that? In my experience the patient goes to the lab, has the blood drawn and they send everything off to Ambry. I've heard of another person who said they were doing "genetic" testing but come to find out they were doing some sort home administered "swab" test from the mouth -- nothing I've ever heard about before, and not the sort of test results I would want to rely on.

If it was my blog you have already read, then you already know everything I would have to say -- yes borderline test results plus CF symptoms should very much be looked into very aggressively. Assuming your son does have CF, he will benefit from a more complete or the big picture treatments of CF -- on of the nice things about getting the diagnosis is you no longer have these odd symptoms with no connection to one another -- after the diagnosis everyone goes "ah ha" it's CF and we know how to treat all of that stuff at the same time! And once he gets on some of the treatments, he will most likely start feeling better.

I also agree the sweaty shiny skin or whatever you called it, is probably just teenage/puberty stuff, probably not really CF related.

I have no real advice about the skeptical relatives -- I guess you'll just have to wait things out until you know for sure. The problem is/could be that even after the genetic testing you will be left with inconclusive results -- some people out there only find one gene, but they have CF symptoms so they are treated as if they have CF. Considering how rapidly they are expanding the number of genes that they can look for it's no suprise that people who once tested negative for two genes can now find two.

Best of luck, and keep us posted !

Alyssa · Mar 11, 2007

Jennifer,

I think my blog is the one you are referencing

I agree with whoever said to call Ambry and ask them what test is being done -- There is also an Ambry representative on the website here that you can ask questions of too. I've never heard of a mother who was put in charge of carrying around a test kit -- why did they ask you to do that? In my experience the patient goes to the lab, has the blood drawn and they send everything off to Ambry. I've heard of another person who said they were doing "genetic" testing but come to find out they were doing some sort home administered "swab" test from the mouth -- nothing I've ever heard about before, and not the sort of test results I would want to rely on.

If it was my blog you have already read, then you already know everything I would have to say -- yes borderline test results plus CF symptoms should very much be looked into very aggressively. Assuming your son does have CF, he will benefit from a more complete or the big picture treatments of CF -- on of the nice things about getting the diagnosis is you no longer have these odd symptoms with no connection to one another -- after the diagnosis everyone goes "ah ha" it's CF and we know how to treat all of that stuff at the same time! And once he gets on some of the treatments, he will most likely start feeling better.

I also agree the sweaty shiny skin or whatever you called it, is probably just teenage/puberty stuff, probably not really CF related.

I have no real advice about the skeptical relatives -- I guess you'll just have to wait things out until you know for sure. The problem is/could be that even after the genetic testing you will be left with inconclusive results -- some people out there only find one gene, but they have CF symptoms so they are treated as if they have CF. Considering how rapidly they are expanding the number of genes that they can look for it's no suprise that people who once tested negative for two genes can now find two.

Best of luck, and keep us posted !

Alyssa · Mar 11, 2007

Jennifer,

I think my blog is the one you are referencing

I agree with whoever said to call Ambry and ask them what test is being done -- There is also an Ambry representative on the website here that you can ask questions of too. I've never heard of a mother who was put in charge of carrying around a test kit -- why did they ask you to do that? In my experience the patient goes to the lab, has the blood drawn and they send everything off to Ambry. I've heard of another person who said they were doing "genetic" testing but come to find out they were doing some sort home administered "swab" test from the mouth -- nothing I've ever heard about before, and not the sort of test results I would want to rely on.

If it was my blog you have already read, then you already know everything I would have to say -- yes borderline test results plus CF symptoms should very much be looked into very aggressively. Assuming your son does have CF, he will benefit from a more complete or the big picture treatments of CF -- on of the nice things about getting the diagnosis is you no longer have these odd symptoms with no connection to one another -- after the diagnosis everyone goes "ah ha" it's CF and we know how to treat all of that stuff at the same time! And once he gets on some of the treatments, he will most likely start feeling better.

I also agree the sweaty shiny skin or whatever you called it, is probably just teenage/puberty stuff, probably not really CF related.

I have no real advice about the skeptical relatives -- I guess you'll just have to wait things out until you know for sure. The problem is/could be that even after the genetic testing you will be left with inconclusive results -- some people out there only find one gene, but they have CF symptoms so they are treated as if they have CF. Considering how rapidly they are expanding the number of genes that they can look for it's no suprise that people who once tested negative for two genes can now find two.

Best of luck, and keep us posted !

Childressj · Mar 11, 2007

Aylssa
Yes, it was your blog that i printed out for all and thanks for sharing that information.
I left a message for the Ambry Guy and He did tell me that they have the kit and were working on it and I should have results in 2-3 weeks. So I responded that I would like to know if it was a full panel or not. So I will await that response.
I was pretty shocked that I was responsible for the kit and getting the blood too. But never having done that, I did not know if it was normal or not. I do work for a large Health Center and they may have thought that it would be ok for me to do that.
I will keep everyone posted on results and such, thanks for all the kind words. Jc

Childressj · Mar 11, 2007

Aylssa
Yes, it was your blog that i printed out for all and thanks for sharing that information.
I left a message for the Ambry Guy and He did tell me that they have the kit and were working on it and I should have results in 2-3 weeks. So I responded that I would like to know if it was a full panel or not. So I will await that response.
I was pretty shocked that I was responsible for the kit and getting the blood too. But never having done that, I did not know if it was normal or not. I do work for a large Health Center and they may have thought that it would be ok for me to do that.
I will keep everyone posted on results and such, thanks for all the kind words. Jc

Childressj · Mar 11, 2007

Aylssa
Yes, it was your blog that i printed out for all and thanks for sharing that information.
I left a message for the Ambry Guy and He did tell me that they have the kit and were working on it and I should have results in 2-3 weeks. So I responded that I would like to know if it was a full panel or not. So I will await that response.
I was pretty shocked that I was responsible for the kit and getting the blood too. But never having done that, I did not know if it was normal or not. I do work for a large Health Center and they may have thought that it would be ok for me to do that.
I will keep everyone posted on results and such, thanks for all the kind words. Jc

okok · Mar 11, 2007

Hi Everyone,

I just want to say that the swab in the mouth is way to get DNA from cheek cells. It is actually a great way to get DNA from cells. I would think that in itself is not a reason to distrust a test...

However if that is not the way that ambry collects samples then it probably indicates that the test is not from ambry.

okok · Mar 11, 2007

Hi Everyone,

I just want to say that the swab in the mouth is way to get DNA from cheek cells. It is actually a great way to get DNA from cells. I would think that in itself is not a reason to distrust a test...

However if that is not the way that ambry collects samples then it probably indicates that the test is not from ambry.

okok · Mar 11, 2007

Hi Everyone,

I just want to say that the swab in the mouth is way to get DNA from cheek cells. It is actually a great way to get DNA from cells. I would think that in itself is not a reason to distrust a test...

However if that is not the way that ambry collects samples then it probably indicates that the test is not from ambry.

Alyssa · Mar 12, 2007

Jennifer,

I saw somewhere on another post you said something about your son also having OCD problems? (at least I think it was you, hopefully I'm not mistaken) Anyway... My son also has some OCD stuff (not enough to give him a full diagnosis, but he does have some OCD tendencies) and is on an anti-anxiety med (SSRI or more commonly known as anti-depressants) He also is PDD/NOS (Pervasive Developmental Delay/ Not otherwise specified), which since he just misses the mark on being "high functioning autistic" he is said to be ASD (Autism Spectrum Disorder)

Alyssa · Mar 12, 2007

Jennifer,

I saw somewhere on another post you said something about your son also having OCD problems? (at least I think it was you, hopefully I'm not mistaken) Anyway... My son also has some OCD stuff (not enough to give him a full diagnosis, but he does have some OCD tendencies) and is on an anti-anxiety med (SSRI or more commonly known as anti-depressants) He also is PDD/NOS (Pervasive Developmental Delay/ Not otherwise specified), which since he just misses the mark on being "high functioning autistic" he is said to be ASD (Autism Spectrum Disorder)

Alyssa · Mar 12, 2007

Jennifer,

I saw somewhere on another post you said something about your son also having OCD problems? (at least I think it was you, hopefully I'm not mistaken) Anyway... My son also has some OCD stuff (not enough to give him a full diagnosis, but he does have some OCD tendencies) and is on an anti-anxiety med (SSRI or more commonly known as anti-depressants) He also is PDD/NOS (Pervasive Developmental Delay/ Not otherwise specified), which since he just misses the mark on being "high functioning autistic" he is said to be ASD (Autism Spectrum Disorder)

Childressj · Mar 12, 2007

Yes
Trevor is OCD, has some depression and ADHD (not Hyperactivity just the no-concentration part)
We had to make a decision to treat either the ADHD (stright A student suddenly making an F) or treat the OCD with Anxiety meds. It was Trevor's decision and so we are trying the OCD therapy and Focalin for the ADHD. The Meds are working great and he is back up to A's and he feels like the music has stopped playing in his head all the time. The OCD is not really getting better but he can recognize it most of time and that helps. If your son can recognize the OCD activity and try to stop or least not do it so many times (such as walking around the toliet 6 times before using it) maybe try only once or twice.
I do firmly believe that some of this ADHD and depression is just (for Trevor anyway)is just being a teenager and it is so hard for him. He is smaller then most but not all. He is sickly some of the time, and he just doesn't care for sports or fighting so I think he feels the whole peer pressure thing really bad.
Thanks for responding Alyssa!

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