Hi All,

Sorry we haven't been on much.

Tom is going really well 18 months after starting treatment.
His CSF is still not completely right. His hearing is down in one
ear, but we're hoping it's only an ear infection. We go back for
retesting soon.

He's also stared High School and is definitely going through
puberty, so is driving me crazy, but is full of beans.

I've been not so well and have been diagnosed with an inflammatory
peripheral neuropathy (CIDP) and am about to trial Intravenous
Immunoglobulin. I have no other inflammatory symptoms like Tom had.
I could also have an inhetited peripheral neuropathy (CMT)as well.

Has anyone heard of someone with NOMID having either of these 2
conditions in their family? I can't believe we'd be unlucky enough
to have 2 rare inflammatory conditions in the family without their
being a link!

Tom's neurologist is waiting to see if I respond to treatment and
other testing to confirm it's inflammatory before contacting the NIH
for their advice.

So I now have my own set of specialists and appointments to juggle
around Tom's and I'm a lot more sympathetic to Tom. Thank goodness
Australia has such a good health system.

Hope everyone is going well and a big hug to all the children.

Louise
Tom in Australia's mum