44/43 sweat test results.......lots of questions???????

[Ratatosk]

DS has two copies of the delta f508 -- homozygous.

A friend of mine, whose granddaughter wasn't diagnosed until she was 1 1/2 struggled with CPT also. They were able to get the vest shortly afterward when a bronchoscopy showed issues with inflammation. DS tended to give us issues with his CPT, when he was 1 1/2 to 2 -- mainly during the mid-afternoon treatment because he wanted to go play -- he'd block us with his arms and yell owie. And sometimes his back would be easier, so we'd give extra attention to the spots with the least resistance, knowing that things would most likely be easier for the other cpt times --slept thru the morning one and would fall asleep during the evening one.

 

[Ratatosk]

DS has two copies of the delta f508 -- homozygous.

A friend of mine, whose granddaughter wasn't diagnosed until she was 1 1/2 struggled with CPT also. They were able to get the vest shortly afterward when a bronchoscopy showed issues with inflammation. DS tended to give us issues with his CPT, when he was 1 1/2 to 2 -- mainly during the mid-afternoon treatment because he wanted to go play -- he'd block us with his arms and yell owie. And sometimes his back would be easier, so we'd give extra attention to the spots with the least resistance, knowing that things would most likely be easier for the other cpt times --slept thru the morning one and would fall asleep during the evening one.

 

[clawson5104]

Thanks for the advice. I haven't done any CPT for a week now, and not sure if it is pure paranoia or if I can tell a difference in his breathing. He seems to be "catching" his breath more than before. and had a little bit of a dry cough last night. maybe just me, but think I will still attempt the CPT.......even if it's only for a minute or so. and not even sure if it is lack of CPT or thanks to our weather not as much swimming. lots of rain and cooler temps. either way, I think we will still attempt it. good news is, no nose bleeds for a week though. but he is not eating as good either. he is still doing okay otherwise....a little crankier than usual, but played in mud puddles two days in a row, so he's happy....lol. wish i'd got pics to share...lol. well, gtg. thanks again.

 

[clawson5104]

Thanks for the advice. I haven't done any CPT for a week now, and not sure if it is pure paranoia or if I can tell a difference in his breathing. He seems to be "catching" his breath more than before. and had a little bit of a dry cough last night. maybe just me, but think I will still attempt the CPT.......even if it's only for a minute or so. and not even sure if it is lack of CPT or thanks to our weather not as much swimming. lots of rain and cooler temps. either way, I think we will still attempt it. good news is, no nose bleeds for a week though. but he is not eating as good either. he is still doing okay otherwise....a little crankier than usual, but played in mud puddles two days in a row, so he's happy....lol. wish i'd got pics to share...lol. well, gtg. thanks again.

 

[clawson5104]

Thanks for the advice. I haven't done any CPT for a week now, and not sure if it is pure paranoia or if I can tell a difference in his breathing. He seems to be "catching" his breath more than before. and had a little bit of a dry cough last night. maybe just me, but think I will still attempt the CPT.......even if it's only for a minute or so. and not even sure if it is lack of CPT or thanks to our weather not as much swimming. lots of rain and cooler temps. either way, I think we will still attempt it. good news is, no nose bleeds for a week though. but he is not eating as good either. he is still doing okay otherwise....a little crankier than usual, but played in mud puddles two days in a row, so he's happy....lol. wish i'd got pics to share...lol. well, gtg. thanks again.

 

[clawson5104]

Thanks for the advice. I haven't done any CPT for a week now, and not sure if it is pure paranoia or if I can tell a difference in his breathing. He seems to be "catching" his breath more than before. and had a little bit of a dry cough last night. maybe just me, but think I will still attempt the CPT.......even if it's only for a minute or so. and not even sure if it is lack of CPT or thanks to our weather not as much swimming. lots of rain and cooler temps. either way, I think we will still attempt it. good news is, no nose bleeds for a week though. but he is not eating as good either. he is still doing okay otherwise....a little crankier than usual, but played in mud puddles two days in a row, so he's happy....lol. wish i'd got pics to share...lol. well, gtg. thanks again.

 

[clawson5104]

Thanks for the advice. I haven't done any CPT for a week now, and not sure if it is pure paranoia or if I can tell a difference in his breathing. He seems to be "catching" his breath more than before. and had a little bit of a dry cough last night. maybe just me, but think I will still attempt the CPT.......even if it's only for a minute or so. and not even sure if it is lack of CPT or thanks to our weather not as much swimming. lots of rain and cooler temps. either way, I think we will still attempt it. good news is, no nose bleeds for a week though. but he is not eating as good either. he is still doing okay otherwise....a little crankier than usual, but played in mud puddles two days in a row, so he's happy....lol. wish i'd got pics to share...lol. well, gtg. thanks again.

 

[karismom]

Hi Carrie,

Have read all your posts and TOTALLY understand your frustration w/docs. If I were you, I would pretty much figure that Wade HAS CF! He has all the symptoms, sorry to say. I feel that he has a rare mutation they could NOT detect. I also feel that the mutations DO NOT matter as far as severity of the disease. There are ALOT of other factors genetically speaking. I have 2 daughters both DDF508 and one has had everything from meconium ileus at birth to TWO lung transplants, Diabetes, sinus surgeries, a bowel obstruction......and the other daughter, THREE hospitalizations in her whole life, ONE sinus surgery. and thats it so far! She is 21 and her sis is 26. So FORGET the mutation thing (theory on outcome) and just treat him for CF. Doctors do NOT know everything, I have come to the point of feeling that they know NOTHING most of the time! (sorry).

Your sons journey w/CF will be unique so try NOT to listen to TOO MUCH chatter from others you will only be very frustrated and confused and will spend ALOT of time waiting for something to happen that may NEVER happen and may MISS something that is REALLY going on! Follow your "MOMMY" instincts, and just always remember PLEASE, that Doctors are NOT Gods and if you have one you are NOT happy with FIRE him (or her) and find one you LIKE. I would be happy to help in any way I can. Take Care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">

 

[karismom]

Hi Carrie,

Have read all your posts and TOTALLY understand your frustration w/docs. If I were you, I would pretty much figure that Wade HAS CF! He has all the symptoms, sorry to say. I feel that he has a rare mutation they could NOT detect. I also feel that the mutations DO NOT matter as far as severity of the disease. There are ALOT of other factors genetically speaking. I have 2 daughters both DDF508 and one has had everything from meconium ileus at birth to TWO lung transplants, Diabetes, sinus surgeries, a bowel obstruction......and the other daughter, THREE hospitalizations in her whole life, ONE sinus surgery. and thats it so far! She is 21 and her sis is 26. So FORGET the mutation thing (theory on outcome) and just treat him for CF. Doctors do NOT know everything, I have come to the point of feeling that they know NOTHING most of the time! (sorry).

Your sons journey w/CF will be unique so try NOT to listen to TOO MUCH chatter from others you will only be very frustrated and confused and will spend ALOT of time waiting for something to happen that may NEVER happen and may MISS something that is REALLY going on! Follow your "MOMMY" instincts, and just always remember PLEASE, that Doctors are NOT Gods and if you have one you are NOT happy with FIRE him (or her) and find one you LIKE. I would be happy to help in any way I can. Take Care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">

 

[karismom]

Hi Carrie,

Have read all your posts and TOTALLY understand your frustration w/docs. If I were you, I would pretty much figure that Wade HAS CF! He has all the symptoms, sorry to say. I feel that he has a rare mutation they could NOT detect. I also feel that the mutations DO NOT matter as far as severity of the disease. There are ALOT of other factors genetically speaking. I have 2 daughters both DDF508 and one has had everything from meconium ileus at birth to TWO lung transplants, Diabetes, sinus surgeries, a bowel obstruction......and the other daughter, THREE hospitalizations in her whole life, ONE sinus surgery. and thats it so far! She is 21 and her sis is 26. So FORGET the mutation thing (theory on outcome) and just treat him for CF. Doctors do NOT know everything, I have come to the point of feeling that they know NOTHING most of the time! (sorry).

Your sons journey w/CF will be unique so try NOT to listen to TOO MUCH chatter from others you will only be very frustrated and confused and will spend ALOT of time waiting for something to happen that may NEVER happen and may MISS something that is REALLY going on! Follow your "MOMMY" instincts, and just always remember PLEASE, that Doctors are NOT Gods and if you have one you are NOT happy with FIRE him (or her) and find one you LIKE. I would be happy to help in any way I can. Take Care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">

 

[karismom]

Hi Carrie,

Have read all your posts and TOTALLY understand your frustration w/docs. If I were you, I would pretty much figure that Wade HAS CF! He has all the symptoms, sorry to say. I feel that he has a rare mutation they could NOT detect. I also feel that the mutations DO NOT matter as far as severity of the disease. There are ALOT of other factors genetically speaking. I have 2 daughters both DDF508 and one has had everything from meconium ileus at birth to TWO lung transplants, Diabetes, sinus surgeries, a bowel obstruction......and the other daughter, THREE hospitalizations in her whole life, ONE sinus surgery. and thats it so far! She is 21 and her sis is 26. So FORGET the mutation thing (theory on outcome) and just treat him for CF. Doctors do NOT know everything, I have come to the point of feeling that they know NOTHING most of the time! (sorry).

Your sons journey w/CF will be unique so try NOT to listen to TOO MUCH chatter from others you will only be very frustrated and confused and will spend ALOT of time waiting for something to happen that may NEVER happen and may MISS something that is REALLY going on! Follow your "MOMMY" instincts, and just always remember PLEASE, that Doctors are NOT Gods and if you have one you are NOT happy with FIRE him (or her) and find one you LIKE. I would be happy to help in any way I can. Take Care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">

 

[karismom]

Hi Carrie,

Have read all your posts and TOTALLY understand your frustration w/docs. If I were you, I would pretty much figure that Wade HAS CF! He has all the symptoms, sorry to say. I feel that he has a rare mutation they could NOT detect. I also feel that the mutations DO NOT matter as far as severity of the disease. There are ALOT of other factors genetically speaking. I have 2 daughters both DDF508 and one has had everything from meconium ileus at birth to TWO lung transplants, Diabetes, sinus surgeries, a bowel obstruction......and the other daughter, THREE hospitalizations in her whole life, ONE sinus surgery. and thats it so far! She is 21 and her sis is 26. So FORGET the mutation thing (theory on outcome) and just treat him for CF. Doctors do NOT know everything, I have come to the point of feeling that they know NOTHING most of the time! (sorry).

Your sons journey w/CF will be unique so try NOT to listen to TOO MUCH chatter from others you will only be very frustrated and confused and will spend ALOT of time waiting for something to happen that may NEVER happen and may MISS something that is REALLY going on! Follow your "MOMMY" instincts, and just always remember PLEASE, that Doctors are NOT Gods and if you have one you are NOT happy with FIRE him (or her) and find one you LIKE. I would be happy to help in any way I can. Take Care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">