susan.craig at nashville.com
Sat Jul 22 01:51:32 EST 1995
I am not sure if this is the proper place for this posting, so if it is not
please just disregard <G>.
I have a 15 month old child with hydrocephalus. She was shunted at 4
months. Her neurosurgeon and peditrician believe she also has another rare
disorder that is genetically linked. However, both have discouraged
testing her. They feel, whatever the problem, it will not be treatable and
we will find it out soon enough.
I have done alot of research through the NORD, MedLine, KnowledgeOne, and
Paperchase. Her symptoms are so vague it is hard to pin anything down.
My questions are:
Can they be sure her disorder is untreatable?
Is the testing painful and expensive?
Where or how to find a good geneticist?
Any other input would be helpful and appreciated.
Thanks in advance,
More information about the Gen-link