Hello everyone,

I hope everyone is doing OK. Michael just came back from our 2 year follow up,
he did
mostly well but there are a few things that surprised me. We were finally able
to get
Michael a dexa scan (6 trips and finally managed to get him to comply) he is
osteopenic
already at 3 1/2 years, I was pretty surprised I expected this to start much
later and given
he is so young what will that mean in 5-10 years? Dr G stopped the calcium
supplementation because his blood shows high calcium levels. His labs are all
over the
place but he seems to be coping well despite it. This trip was the first where
he had no
problems after anestetic, especially surprising because they had problems with
the LP and
he wound up having 3 taps. The MRI results are what I am most concerned with,
the MRI
report reads "increased T2 and flair signal in the subcortical white matter of
the left frontal
lobe, could represent a migration anomoly". Is it NOMID related or completly
unrelated?
Dr G described a benign tumor of grey matter where white matter should be, has
anyone
had something like this, I'd appreciate any info.

Lisa, I am sorry that you have not been able to find a diagnosis for Fyn, I
remember 2
years ago as I learned about Michael's NOMID you were going through the same and
our
boys are so close in age. I hope you are able to find answers soon.

Take care,
Karen A