13 year old Boy-can some one help me?

[Childressj]

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!

 

[Childressj]

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!

 

[ithink2]

Hi,
For personal reasons, I would like to donate a lobe of my lung for your son.
My blood type is A+ and I have NEVER soked, drank or used drugs. I run every day and have the cardiovascular system of a steam engine.
I can be contacted at 858 300 7086.
Thank you
Steve Norton Ph.D.
Instructor in Mathematics

 

[ithink2]

Hi,
For personal reasons, I would like to donate a lobe of my lung for your son.
My blood type is A+ and I have NEVER soked, drank or used drugs. I run every day and have the cardiovascular system of a steam engine.
I can be contacted at 858 300 7086.
Thank you
Steve Norton Ph.D.
Instructor in Mathematics

 

[ithink2]

Hi,
For personal reasons, I would like to donate a lobe of my lung for your son.
My blood type is A+ and I have NEVER soked, drank or used drugs. I run every day and have the cardiovascular system of a steam engine.
I can be contacted at 858 300 7086.
Thank you
Steve Norton Ph.D.
Instructor in Mathematics

 

[Childressj]

Just wanted to send an update to everyone who has so nicely responded and tried to ease my mind about all of this. Today is two weeks since the ambry genentics testing was done, so hopefully I should hear something this week.

 

[Childressj]

Just wanted to send an update to everyone who has so nicely responded and tried to ease my mind about all of this. Today is two weeks since the ambry genentics testing was done, so hopefully I should hear something this week.

 

[Childressj]

Just wanted to send an update to everyone who has so nicely responded and tried to ease my mind about all of this. Today is two weeks since the ambry genentics testing was done, so hopefully I should hear something this week.

 

[Childressj]

Hey everyone
Thanks again for being so supportive during this craziness-Well we got back the results from the ambry CTFR Full Gene testing, the nurse ( who is faxing the resutls to me) said that is showed the Delta f508 and that he was only a carrier. I asked ehr about the deletion testing and the amplified testing and she is checking on this for me. What does this mean for Trevor so far......Does it mean that he does not have CF? Can I relax now and start looking in other directiosn to the casue for his symtoms? Any help would be appreciated...Thanks

 

[Childressj]

Hey everyone
Thanks again for being so supportive during this craziness-Well we got back the results from the ambry CTFR Full Gene testing, the nurse ( who is faxing the resutls to me) said that is showed the Delta f508 and that he was only a carrier. I asked ehr about the deletion testing and the amplified testing and she is checking on this for me. What does this mean for Trevor so far......Does it mean that he does not have CF? Can I relax now and start looking in other directiosn to the casue for his symtoms? Any help would be appreciated...Thanks

 

[Childressj]

Hey everyone
Thanks again for being so supportive during this craziness-Well we got back the results from the ambry CTFR Full Gene testing, the nurse ( who is faxing the resutls to me) said that is showed the Delta f508 and that he was only a carrier. I asked ehr about the deletion testing and the amplified testing and she is checking on this for me. What does this mean for Trevor so far......Does it mean that he does not have CF? Can I relax now and start looking in other directiosn to the casue for his symtoms? Any help would be appreciated...Thanks

 

[sdelorenzo]

Jennifer,
It still sounds like your son is in the "gray area." It is good that only one gene was found. It is very possible that he doesn't have cf. But it is also possible that he carries a gene that yet not been identified by Ambry. I have heard that some genes that are often not identified yet do tend to cause lower sweat test scores. Can you ask about getting the nasal differential testing done on your son? Has he had a sputum culture to see if he has any cf bacteria in his throat? You might want to ask the "Ambry" guy in the Welcome Ambry Genetics topic. If I was in your shoes, I would want the pulmonogists to medically treat my child as if they had cf until it was definitely proved that he didn't have it.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Jennifer,
It still sounds like your son is in the "gray area." It is good that only one gene was found. It is very possible that he doesn't have cf. But it is also possible that he carries a gene that yet not been identified by Ambry. I have heard that some genes that are often not identified yet do tend to cause lower sweat test scores. Can you ask about getting the nasal differential testing done on your son? Has he had a sputum culture to see if he has any cf bacteria in his throat? You might want to ask the "Ambry" guy in the Welcome Ambry Genetics topic. If I was in your shoes, I would want the pulmonogists to medically treat my child as if they had cf until it was definitely proved that he didn't have it.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Jennifer,
It still sounds like your son is in the "gray area." It is good that only one gene was found. It is very possible that he doesn't have cf. But it is also possible that he carries a gene that yet not been identified by Ambry. I have heard that some genes that are often not identified yet do tend to cause lower sweat test scores. Can you ask about getting the nasal differential testing done on your son? Has he had a sputum culture to see if he has any cf bacteria in his throat? You might want to ask the "Ambry" guy in the Welcome Ambry Genetics topic. If I was in your shoes, I would want the pulmonogists to medically treat my child as if they had cf until it was definitely proved that he didn't have it.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[Childressj]

Thanks for your response, I have sent Steven (ambry guy) a message about the deletion testing(??) the pulm. is ordering that right now as we speak. they said that is takes two more weeks to get these resutls. If those show nothing then I will probably ask the pulm to see and treat my son. They have not even seen him yet.....They are jsut ordering the testing with the pediatrician. I asked the nurse to have the pulm. review Trev's medical history and see what he thought. I hoep that he will do that and get back with me.......Those tests seem like great ideas to me, when the nurse calls back I will mention them to her and see what she says....Thanks a bunch!

 

[Childressj]

Thanks for your response, I have sent Steven (ambry guy) a message about the deletion testing(??) the pulm. is ordering that right now as we speak. they said that is takes two more weeks to get these resutls. If those show nothing then I will probably ask the pulm to see and treat my son. They have not even seen him yet.....They are jsut ordering the testing with the pediatrician. I asked the nurse to have the pulm. review Trev's medical history and see what he thought. I hoep that he will do that and get back with me.......Those tests seem like great ideas to me, when the nurse calls back I will mention them to her and see what she says....Thanks a bunch!

 

[Childressj]

Thanks for your response, I have sent Steven (ambry guy) a message about the deletion testing(??) the pulm. is ordering that right now as we speak. they said that is takes two more weeks to get these resutls. If those show nothing then I will probably ask the pulm to see and treat my son. They have not even seen him yet.....They are jsut ordering the testing with the pediatrician. I asked the nurse to have the pulm. review Trev's medical history and see what he thought. I hoep that he will do that and get back with me.......Those tests seem like great ideas to me, when the nurse calls back I will mention them to her and see what she says....Thanks a bunch!

 

[Childressj]

Well, we finally go t the results of the Deletion/detection and the full gene analysis has been done. It still says that Trevor only has the delta f508 and no other mutations identified. Sicne the results clearly stated that "however, approximately 2% of patients with classic CF will have only one mutation detected." The nurse wanted to go over this with the pulmonologist and Gastro dr. to be sure if they wanted to do any other testing. I guess we are still in limbo, she aske dabout Trevor's weight and I told ehr he weighs 134 and is 5'5" so he does not ahve any growth issues right now, although he ahs in the past. I guess I am unsure of where to go from here. Do I just take it as Trevor is just a carrier and go on or should I request a further work-up of CF and if so, what other tests can they do to help with a Cf or No CF diagnosis? Thanks for any help at all with this, you are all appreciated. Jennifer

 

[Childressj]

Well, we finally go t the results of the Deletion/detection and the full gene analysis has been done. It still says that Trevor only has the delta f508 and no other mutations identified. Sicne the results clearly stated that "however, approximately 2% of patients with classic CF will have only one mutation detected." The nurse wanted to go over this with the pulmonologist and Gastro dr. to be sure if they wanted to do any other testing. I guess we are still in limbo, she aske dabout Trevor's weight and I told ehr he weighs 134 and is 5'5" so he does not ahve any growth issues right now, although he ahs in the past. I guess I am unsure of where to go from here. Do I just take it as Trevor is just a carrier and go on or should I request a further work-up of CF and if so, what other tests can they do to help with a Cf or No CF diagnosis? Thanks for any help at all with this, you are all appreciated. Jennifer

 

[Childressj]

Well, we finally go t the results of the Deletion/detection and the full gene analysis has been done. It still says that Trevor only has the delta f508 and no other mutations identified. Sicne the results clearly stated that "however, approximately 2% of patients with classic CF will have only one mutation detected." The nurse wanted to go over this with the pulmonologist and Gastro dr. to be sure if they wanted to do any other testing. I guess we are still in limbo, she aske dabout Trevor's weight and I told ehr he weighs 134 and is 5'5" so he does not ahve any growth issues right now, although he ahs in the past. I guess I am unsure of where to go from here. Do I just take it as Trevor is just a carrier and go on or should I request a further work-up of CF and if so, what other tests can they do to help with a Cf or No CF diagnosis? Thanks for any help at all with this, you are all appreciated. Jennifer