frustration has hit an all time high!

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william1217

New member
We finally made it into the ped pulmo md last week. Of course, we spent a lot of time going over my sons history. At the time, he had the sniffles due to a cold his twin gave him. Honestly, I cannot remember the last time his nose was runny. But that day it was drippy. MD perseverated on the fact that his nose was runny, allergies possibly she said, despite the fact that we have already been down that road and had all of the allergy testing done that proved to be negative. She sent us for a chest xray and we returned to her office immediately. In came the pulse oximeter, respiratory therapist to give him a treatment as the xray showed inflamation. She now seemed concerned. Prior to the xray, she felt that the sweat test was sufficient enough- that tune changed to the basic panel of genetic testing and immunological blood testing post xray results. Her parting comments were, "his disease process is far enough along that pulmonary and GI need involved as soon as possible. OK- but was is the disease process we are dealing with?! We were also sent home on five meds including three steroids with a return appt this coming Friday. I just received a voice mail from her stating "the immunology tests looked good, looks like allergies, Cf results won't be back for several weeks. Hope he feels better."

First of all, he doesn't have allergies- we have ruled it out and despite my husb and I stating that it is a rare occasion that he has a drippy nose, it seems she can't get past it. The reason we were sent there is that besides his respiratory issues he has fallen off the growth chart in height and weight. With no way to get a hold of her as it is a fortress just to get to her nurse, I am left spinning with frustration, with worry and honestly feeling very unheard. Ugh!
 
W

william1217

New member
We finally made it into the ped pulmo md last week. Of course, we spent a lot of time going over my sons history. At the time, he had the sniffles due to a cold his twin gave him. Honestly, I cannot remember the last time his nose was runny. But that day it was drippy. MD perseverated on the fact that his nose was runny, allergies possibly she said, despite the fact that we have already been down that road and had all of the allergy testing done that proved to be negative. She sent us for a chest xray and we returned to her office immediately. In came the pulse oximeter, respiratory therapist to give him a treatment as the xray showed inflamation. She now seemed concerned. Prior to the xray, she felt that the sweat test was sufficient enough- that tune changed to the basic panel of genetic testing and immunological blood testing post xray results. Her parting comments were, "his disease process is far enough along that pulmonary and GI need involved as soon as possible. OK- but was is the disease process we are dealing with?! We were also sent home on five meds including three steroids with a return appt this coming Friday. I just received a voice mail from her stating "the immunology tests looked good, looks like allergies, Cf results won't be back for several weeks. Hope he feels better."

First of all, he doesn't have allergies- we have ruled it out and despite my husb and I stating that it is a rare occasion that he has a drippy nose, it seems she can't get past it. The reason we were sent there is that besides his respiratory issues he has fallen off the growth chart in height and weight. With no way to get a hold of her as it is a fortress just to get to her nurse, I am left spinning with frustration, with worry and honestly feeling very unheard. Ugh!
 
W

william1217

New member
We finally made it into the ped pulmo md last week. Of course, we spent a lot of time going over my sons history. At the time, he had the sniffles due to a cold his twin gave him. Honestly, I cannot remember the last time his nose was runny. But that day it was drippy. MD perseverated on the fact that his nose was runny, allergies possibly she said, despite the fact that we have already been down that road and had all of the allergy testing done that proved to be negative. She sent us for a chest xray and we returned to her office immediately. In came the pulse oximeter, respiratory therapist to give him a treatment as the xray showed inflamation. She now seemed concerned. Prior to the xray, she felt that the sweat test was sufficient enough- that tune changed to the basic panel of genetic testing and immunological blood testing post xray results. Her parting comments were, "his disease process is far enough along that pulmonary and GI need involved as soon as possible. OK- but was is the disease process we are dealing with?! We were also sent home on five meds including three steroids with a return appt this coming Friday. I just received a voice mail from her stating "the immunology tests looked good, looks like allergies, Cf results won't be back for several weeks. Hope he feels better."

First of all, he doesn't have allergies- we have ruled it out and despite my husb and I stating that it is a rare occasion that he has a drippy nose, it seems she can't get past it. The reason we were sent there is that besides his respiratory issues he has fallen off the growth chart in height and weight. With no way to get a hold of her as it is a fortress just to get to her nurse, I am left spinning with frustration, with worry and honestly feeling very unheard. Ugh!
 
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tammykrumrey

Guest
I think it sounds like you need a doctor who is willing to listen to your concerns. It sounds like CF genetic test results are in the works...but I would still possibly look into a different doctor for future concerns.

We had a ped. who I feel really let me down prior to my daughter being dx with CF. And I did switch immediately. I just felt that he didn't listen to my concerns and kept putting them off as to some 'easy' explanation. He did call and apoligize after she was rushed to the hospital and the following day had a positive sweat test. I still felt that he just wasn't the best to care for my daughter (and the one I was carrying at the time).

But now we do have a great ped. who does listen. But to be quite honest, we only see her for annual check ups and flu shots. Otherwise everything is done with our CF doctor.

Maybe you could just start interviewing different ped.
 
T

tammykrumrey

Guest
I think it sounds like you need a doctor who is willing to listen to your concerns. It sounds like CF genetic test results are in the works...but I would still possibly look into a different doctor for future concerns.

We had a ped. who I feel really let me down prior to my daughter being dx with CF. And I did switch immediately. I just felt that he didn't listen to my concerns and kept putting them off as to some 'easy' explanation. He did call and apoligize after she was rushed to the hospital and the following day had a positive sweat test. I still felt that he just wasn't the best to care for my daughter (and the one I was carrying at the time).

But now we do have a great ped. who does listen. But to be quite honest, we only see her for annual check ups and flu shots. Otherwise everything is done with our CF doctor.

Maybe you could just start interviewing different ped.
 
T

tammykrumrey

Guest
I think it sounds like you need a doctor who is willing to listen to your concerns. It sounds like CF genetic test results are in the works...but I would still possibly look into a different doctor for future concerns.

We had a ped. who I feel really let me down prior to my daughter being dx with CF. And I did switch immediately. I just felt that he didn't listen to my concerns and kept putting them off as to some 'easy' explanation. He did call and apoligize after she was rushed to the hospital and the following day had a positive sweat test. I still felt that he just wasn't the best to care for my daughter (and the one I was carrying at the time).

But now we do have a great ped. who does listen. But to be quite honest, we only see her for annual check ups and flu shots. Otherwise everything is done with our CF doctor.

Maybe you could just start interviewing different ped.
 
H

hallett2007

New member
Hi my name is rebecca. i am in the same boat but my pad is great for one of my kids i should say. My son Ryan who was born in Feb 06 is a walking medaical problem. they think he is a carryer for cf. My doughter on the other hand just found out that her sweat teast came back hi. now they think that she has cf.
 
H

hallett2007

New member
Hi my name is rebecca. i am in the same boat but my pad is great for one of my kids i should say. My son Ryan who was born in Feb 06 is a walking medaical problem. they think he is a carryer for cf. My doughter on the other hand just found out that her sweat teast came back hi. now they think that she has cf.
 
H

hallett2007

New member
Hi my name is rebecca. i am in the same boat but my pad is great for one of my kids i should say. My son Ryan who was born in Feb 06 is a walking medaical problem. they think he is a carryer for cf. My doughter on the other hand just found out that her sweat teast came back hi. now they think that she has cf.
 
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