My son has all of the classic CF symptoms, but has had a negative sweat test and has been tested for 32 mutations. He has been on pancreatic enzymes, which have helped a lot, then when we took him off he was in the hospital due to a bowel obstruction. He is a FTT kid, is fed thru a g-tube at night, and requires about 2000 calories a day, just now getting back on the growth chart. I have read where the only accurate testing is done thru ambry or quest, and his testing was done thru a childrens hospital. I was tested while pregnant, and not a carrier, but I also read where that could really not matter anymore with new things that they are finding. We have an appt tomorrow with his pulmonary dr, who is also a CF dr, so I am wondering if we should push to have more testing done. We just want some type of answer to as why he is the way he is. Thanks for helping.
should we do more testing?
- Thread starter mom23
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My son has all of the classic CF symptoms, but has had a negative sweat test and has been tested for 32 mutations. He has been on pancreatic enzymes, which have helped a lot, then when we took him off he was in the hospital due to a bowel obstruction. He is a FTT kid, is fed thru a g-tube at night, and requires about 2000 calories a day, just now getting back on the growth chart. I have read where the only accurate testing is done thru ambry or quest, and his testing was done thru a childrens hospital. I was tested while pregnant, and not a carrier, but I also read where that could really not matter anymore with new things that they are finding. We have an appt tomorrow with his pulmonary dr, who is also a CF dr, so I am wondering if we should push to have more testing done. We just want some type of answer to as why he is the way he is. Thanks for helping.
My son has all of the classic CF symptoms, but has had a negative sweat test and has been tested for 32 mutations. He has been on pancreatic enzymes, which have helped a lot, then when we took him off he was in the hospital due to a bowel obstruction. He is a FTT kid, is fed thru a g-tube at night, and requires about 2000 calories a day, just now getting back on the growth chart. I have read where the only accurate testing is done thru ambry or quest, and his testing was done thru a childrens hospital. I was tested while pregnant, and not a carrier, but I also read where that could really not matter anymore with new things that they are finding. We have an appt tomorrow with his pulmonary dr, who is also a CF dr, so I am wondering if we should push to have more testing done. We just want some type of answer to as why he is the way he is. Thanks for helping.
M
Mommafirst
Guest
I think more testing is probably a good idea. It seems, the more and more stories I read, that you can prove one HAS CF, but its really hard to prove they don't. Since False negatives seem somewhat common with sweats, and there are over 1500 known (and how many unknown) mutations, the quest seems to keep going and going. I hope you get some answers. Limbo is not a fun place to be.
M
Mommafirst
Guest
I think more testing is probably a good idea. It seems, the more and more stories I read, that you can prove one HAS CF, but its really hard to prove they don't. Since False negatives seem somewhat common with sweats, and there are over 1500 known (and how many unknown) mutations, the quest seems to keep going and going. I hope you get some answers. Limbo is not a fun place to be.
M
Mommafirst
Guest
I think more testing is probably a good idea. It seems, the more and more stories I read, that you can prove one HAS CF, but its really hard to prove they don't. Since False negatives seem somewhat common with sweats, and there are over 1500 known (and how many unknown) mutations, the quest seems to keep going and going. I hope you get some answers. Limbo is not a fun place to be.
Alyssa,
May I ask which dr(s) you see at Children's in Seattle? I am in Wash., and my son has a couple of Drs that we go to Seattle to see. Also, do I just ask for the full genetic test panel? I e-mailed ambry, and they said that they test for 99% of the 1500 mutations, and I am interested to see if our local ped can send the bloodwork for that, or if we should go through Childrens. We will be going up there in the next month or so for another GI appt, so I am trying to get all of the info that I can. Thanks!!
May I ask which dr(s) you see at Children's in Seattle? I am in Wash., and my son has a couple of Drs that we go to Seattle to see. Also, do I just ask for the full genetic test panel? I e-mailed ambry, and they said that they test for 99% of the 1500 mutations, and I am interested to see if our local ped can send the bloodwork for that, or if we should go through Childrens. We will be going up there in the next month or so for another GI appt, so I am trying to get all of the info that I can. Thanks!!
Alyssa,
May I ask which dr(s) you see at Children's in Seattle? I am in Wash., and my son has a couple of Drs that we go to Seattle to see. Also, do I just ask for the full genetic test panel? I e-mailed ambry, and they said that they test for 99% of the 1500 mutations, and I am interested to see if our local ped can send the bloodwork for that, or if we should go through Childrens. We will be going up there in the next month or so for another GI appt, so I am trying to get all of the info that I can. Thanks!!
May I ask which dr(s) you see at Children's in Seattle? I am in Wash., and my son has a couple of Drs that we go to Seattle to see. Also, do I just ask for the full genetic test panel? I e-mailed ambry, and they said that they test for 99% of the 1500 mutations, and I am interested to see if our local ped can send the bloodwork for that, or if we should go through Childrens. We will be going up there in the next month or so for another GI appt, so I am trying to get all of the info that I can. Thanks!!
Alyssa,
May I ask which dr(s) you see at Children's in Seattle? I am in Wash., and my son has a couple of Drs that we go to Seattle to see. Also, do I just ask for the full genetic test panel? I e-mailed ambry, and they said that they test for 99% of the 1500 mutations, and I am interested to see if our local ped can send the bloodwork for that, or if we should go through Childrens. We will be going up there in the next month or so for another GI appt, so I am trying to get all of the info that I can. Thanks!!
May I ask which dr(s) you see at Children's in Seattle? I am in Wash., and my son has a couple of Drs that we go to Seattle to see. Also, do I just ask for the full genetic test panel? I e-mailed ambry, and they said that they test for 99% of the 1500 mutations, and I am interested to see if our local ped can send the bloodwork for that, or if we should go through Childrens. We will be going up there in the next month or so for another GI appt, so I am trying to get all of the info that I can. Thanks!!
My kids have always seen Dr. Ron Gibson at Children's in Seattle. He is a wonderful guy. Our PCP just gave us a referral to see anyone at Children's CF and Chest Clinic and Children's handled the rest. I would highly recommend you doing the same thing -- primary care docs do not have the experience in dealing with CF that the docs at Children's do. Jump through whatever insurance hoops you have to in order to get all your CF care from Children's. If you have some strange insurance loop hole that says the blood draw has to be done through your regular doc or something, make sure that doctor and Children's are communicating about what test is being done and specifically what lab is handling it.
So you are also seeing a GI doc in Seattle too? If it turns out that your child does have CF and you start seeing the pulmonary docs at Children's for that, you *might want to consider transferring the GI care to Children's as well. I just liked the convenience of it all -- the chest doctors know the GI doctors well, communication is easier, the computer system (medical records) are at each doctor's fingertips -- even the same physical file follows the patient around the building no matter what the child is being seen for (for some reason that makes me feel better - knowing every doctor we see there, gets the full picture)
We love Dr. Gibson, but I'm sure everyone there is great -- we had originally been told to schedule some appointments with other doctors over the years, just so we would get to know everyone, but we have always stuck with him. Only two times when we really needed to get in did we have to see someone else (and of course it was fine) So I always felt like it was our fault for not trying out different doctors within the Chest Clinic, until I spoke with a couple other parents who made the comment that they felt it was the doctors who become possessive (attached) to their patients
I have noticed that they do a very good job of communicating with each other about all of the patients -- they have regular meeting to discuss EVERY patient they are currently seeing so every doctor has "heard" about you at one point or another anyway
I could (and probably already have) go on and on about the excellent care we have received from Children's.... so if you would like to know any more, please feel free to ask.
How far from Seattle are you?
So you are also seeing a GI doc in Seattle too? If it turns out that your child does have CF and you start seeing the pulmonary docs at Children's for that, you *might want to consider transferring the GI care to Children's as well. I just liked the convenience of it all -- the chest doctors know the GI doctors well, communication is easier, the computer system (medical records) are at each doctor's fingertips -- even the same physical file follows the patient around the building no matter what the child is being seen for (for some reason that makes me feel better - knowing every doctor we see there, gets the full picture)
We love Dr. Gibson, but I'm sure everyone there is great -- we had originally been told to schedule some appointments with other doctors over the years, just so we would get to know everyone, but we have always stuck with him. Only two times when we really needed to get in did we have to see someone else (and of course it was fine) So I always felt like it was our fault for not trying out different doctors within the Chest Clinic, until I spoke with a couple other parents who made the comment that they felt it was the doctors who become possessive (attached) to their patients
I have noticed that they do a very good job of communicating with each other about all of the patients -- they have regular meeting to discuss EVERY patient they are currently seeing so every doctor has "heard" about you at one point or another anyway I could (and probably already have) go on and on about the excellent care we have received from Children's.... so if you would like to know any more, please feel free to ask.
How far from Seattle are you?
My kids have always seen Dr. Ron Gibson at Children's in Seattle. He is a wonderful guy. Our PCP just gave us a referral to see anyone at Children's CF and Chest Clinic and Children's handled the rest. I would highly recommend you doing the same thing -- primary care docs do not have the experience in dealing with CF that the docs at Children's do. Jump through whatever insurance hoops you have to in order to get all your CF care from Children's. If you have some strange insurance loop hole that says the blood draw has to be done through your regular doc or something, make sure that doctor and Children's are communicating about what test is being done and specifically what lab is handling it.
So you are also seeing a GI doc in Seattle too? If it turns out that your child does have CF and you start seeing the pulmonary docs at Children's for that, you *might want to consider transferring the GI care to Children's as well. I just liked the convenience of it all -- the chest doctors know the GI doctors well, communication is easier, the computer system (medical records) are at each doctor's fingertips -- even the same physical file follows the patient around the building no matter what the child is being seen for (for some reason that makes me feel better - knowing every doctor we see there, gets the full picture)
We love Dr. Gibson, but I'm sure everyone there is great -- we had originally been told to schedule some appointments with other doctors over the years, just so we would get to know everyone, but we have always stuck with him. Only two times when we really needed to get in did we have to see someone else (and of course it was fine) So I always felt like it was our fault for not trying out different doctors within the Chest Clinic, until I spoke with a couple other parents who made the comment that they felt it was the doctors who become possessive (attached) to their patients I have noticed that they do a very good job of communicating with each other about all of the patients -- they have regular meeting to discuss EVERY patient they are currently seeing so every doctor has "heard" about you at one point or another anyway
I could (and probably already have) go on and on about the excellent care we have received from Children's.... so if you would like to know any more, please feel free to ask.
How far from Seattle are you?
So you are also seeing a GI doc in Seattle too? If it turns out that your child does have CF and you start seeing the pulmonary docs at Children's for that, you *might want to consider transferring the GI care to Children's as well. I just liked the convenience of it all -- the chest doctors know the GI doctors well, communication is easier, the computer system (medical records) are at each doctor's fingertips -- even the same physical file follows the patient around the building no matter what the child is being seen for (for some reason that makes me feel better - knowing every doctor we see there, gets the full picture)
We love Dr. Gibson, but I'm sure everyone there is great -- we had originally been told to schedule some appointments with other doctors over the years, just so we would get to know everyone, but we have always stuck with him. Only two times when we really needed to get in did we have to see someone else (and of course it was fine) So I always felt like it was our fault for not trying out different doctors within the Chest Clinic, until I spoke with a couple other parents who made the comment that they felt it was the doctors who become possessive (attached) to their patients
I have noticed that they do a very good job of communicating with each other about all of the patients -- they have regular meeting to discuss EVERY patient they are currently seeing so every doctor has "heard" about you at one point or another anyway I could (and probably already have) go on and on about the excellent care we have received from Children's.... so if you would like to know any more, please feel free to ask.
How far from Seattle are you?