icnmgrjill
05-02-2004, 07:00 PM
I received the following message by email and was wondering if anyone remembered this. I truly don't.
Hello,
A couple of years back I came across a personal story on your website about a young boy with interstitial cystitis. He had described his pain to his mother as a "triangle". While I know this all seems odd and trivial, it is very important that I find this story.
My son has experienced terrific pain since he was 18 months upon urination (he is now 5). Until this year, the doctor's have pushed us aside and done nothing for him. He has unergone a cystoscopy in search of valves with no luck. They have
labeled him a "dysfunctional voider". We have tried biofeedback therapy, however he has refused. He is petrified to let anyone touch him and so we are back again to no treatment.
I have IC myself, and my son's symptoms are only too familiar to me. The point that caught my eye the most was my son explained his pain as a "triangle" when he was 3 years old. Being such an unusual adjective to describe pain, I always assumed he meant that it was "sharp" pain. It breaks my heart to think he may IC as I know the pain I have gone through, but to go undiagnosed is worse. The doctor's are adament that he, as a child, will not have IC. So I am compiling information about children
with IC to appeal to them once more. I feel that the connection of this child's
words and mine is more than coincidental. Any help that you can lend to locating this information for me would be greatly appreciated.
Thank you,
KL
Hello,
A couple of years back I came across a personal story on your website about a young boy with interstitial cystitis. He had described his pain to his mother as a "triangle". While I know this all seems odd and trivial, it is very important that I find this story.
My son has experienced terrific pain since he was 18 months upon urination (he is now 5). Until this year, the doctor's have pushed us aside and done nothing for him. He has unergone a cystoscopy in search of valves with no luck. They have
labeled him a "dysfunctional voider". We have tried biofeedback therapy, however he has refused. He is petrified to let anyone touch him and so we are back again to no treatment.
I have IC myself, and my son's symptoms are only too familiar to me. The point that caught my eye the most was my son explained his pain as a "triangle" when he was 3 years old. Being such an unusual adjective to describe pain, I always assumed he meant that it was "sharp" pain. It breaks my heart to think he may IC as I know the pain I have gone through, but to go undiagnosed is worse. The doctor's are adament that he, as a child, will not have IC. So I am compiling information about children
with IC to appeal to them once more. I feel that the connection of this child's
words and mine is more than coincidental. Any help that you can lend to locating this information for me would be greatly appreciated.
Thank you,
KL