veryworriedmom
05-31-2008, 04:51 AM
I am the mother to a 10 year old who has a long history of bladder issues. At 6 mos. old she had a fever of 105.8 and a raging kidney infection and basically has had an infection/symptoms ever since, with just brief periods of releif here and there.
She had her first VCUG at 6 mos. and at the time the doctors were amazed by how large her bladder was. At 7 weeks old she had a tumor the size of a football and most of her liver removed. Apparently the bladder took over much of the space. I was told at the time it was no big deal and would not affect her. As a baby she would go hours and hours without having a wet diaper. She was basically potty trained (by herself) at 18 mos. and if she ever had a wet pull-up ( I didn't have her in panties yet) I could almost count on an infection. After reading the stories here I am begining to wonder if she doesn't have IC.
For the last several years she gets the symptoms and for weeks she is in pain, but her samples she leaves at the doctor show no infection. In most cases there is eventually an infection.
Currently she has been sick since April 6th. Her samples have shown infection on and off during this time. Right now she is having symptoms, but the urologist says there is no infection. She was cath'ed for her last sample on Tuesday. The nurses have basically started saying things like "The doctor doesn't know what else to do and he doesn't know who would, so I am not sure what you want from us" and "what tests do you want us to do" and "There is nothing wrong with her". I am feeling like a bladder/kidney infection is the only thing they are willing to look for.
I've gone on and on and maybe no one will even see this. I have to honestly say that it has taken me several days to even start this thread. I spent the first day I found this forum crying in my closet on and off. I knew that there was something out there that would explain this for us, I was just hoping it would be something with a cure. I'm over it now though and ready to get some answers. I am trying to focus on the fact that there are people out there with this that have found some relief.
Denise
She had her first VCUG at 6 mos. and at the time the doctors were amazed by how large her bladder was. At 7 weeks old she had a tumor the size of a football and most of her liver removed. Apparently the bladder took over much of the space. I was told at the time it was no big deal and would not affect her. As a baby she would go hours and hours without having a wet diaper. She was basically potty trained (by herself) at 18 mos. and if she ever had a wet pull-up ( I didn't have her in panties yet) I could almost count on an infection. After reading the stories here I am begining to wonder if she doesn't have IC.
For the last several years she gets the symptoms and for weeks she is in pain, but her samples she leaves at the doctor show no infection. In most cases there is eventually an infection.
Currently she has been sick since April 6th. Her samples have shown infection on and off during this time. Right now she is having symptoms, but the urologist says there is no infection. She was cath'ed for her last sample on Tuesday. The nurses have basically started saying things like "The doctor doesn't know what else to do and he doesn't know who would, so I am not sure what you want from us" and "what tests do you want us to do" and "There is nothing wrong with her". I am feeling like a bladder/kidney infection is the only thing they are willing to look for.
I've gone on and on and maybe no one will even see this. I have to honestly say that it has taken me several days to even start this thread. I spent the first day I found this forum crying in my closet on and off. I knew that there was something out there that would explain this for us, I was just hoping it would be something with a cure. I'm over it now though and ready to get some answers. I am trying to focus on the fact that there are people out there with this that have found some relief.
Denise