Genetic mutation - Cancerous??
Posted: Tue Oct 02, 2001 6:03 pm
Hello Friends,
I am looking for some guidance. This is an unusual situation.
I was treating a pretty 'healthy' child of 4 years old.
After some extensive testing they found a cancerous tumor behind his ear.
Now here is the bottom line of all the testing:
The Tumor was a papilary tumor of the middle ear, malignent - an
Endolymphatic sac tumor.
Called Van Hipplelindau type.
It is a genetic mutation of one of the UHL genenes - this child has a new
kind of mutation (not the common one).
What do I do with something like this??
The child will now undergo a brain scan every 3 months, a full body scan
annually, with will include brain, spine, renal ultrasound, deep eye
exams and a 24 hour urine sample. The will be looking for
Hemangioblastomas. He will be put in a twilight sleep and they want to
use general anesthesia.
Mom is concerned about the anesthesia and scans causing more damage.
Any suggestions are appreciated. There is not much subjective or
objective symptoms to go on, the childs energy is good he runs and plays
like most kids. His sensory integration is dysfunctional and perhaps I
need to collect that info along with his excessive fear of needles.
Thanks,
Maria
I am looking for some guidance. This is an unusual situation.
I was treating a pretty 'healthy' child of 4 years old.
After some extensive testing they found a cancerous tumor behind his ear.
Now here is the bottom line of all the testing:
The Tumor was a papilary tumor of the middle ear, malignent - an
Endolymphatic sac tumor.
Called Van Hipplelindau type.
It is a genetic mutation of one of the UHL genenes - this child has a new
kind of mutation (not the common one).
What do I do with something like this??
The child will now undergo a brain scan every 3 months, a full body scan
annually, with will include brain, spine, renal ultrasound, deep eye
exams and a 24 hour urine sample. The will be looking for
Hemangioblastomas. He will be put in a twilight sleep and they want to
use general anesthesia.
Mom is concerned about the anesthesia and scans causing more damage.
Any suggestions are appreciated. There is not much subjective or
objective symptoms to go on, the childs energy is good he runs and plays
like most kids. His sensory integration is dysfunctional and perhaps I
need to collect that info along with his excessive fear of needles.
Thanks,
Maria