Bet you didn't really think you'd have enough people for an eGroup,
huh? I started one a year ago for Floating Harbor, and waited 6
months for a single response and when I didn't get one I cancelled
the group. Glad you started it.

Hi Lynette - I read your story in the newsletter. I am mostly in
touch with Deana and Jan from Michigan. We are from New York. We just
moved back from Missouri where we lived for 2 years and where she was
diagnosed. Monica is 3, which makes her one of the youngest with a
diagnosis. The doctors didn't really want to do it, because no one
had ever actually seen a case before. Actually, only one doctor had
ever even heard of it until we brought it up. We brought her to the
hospital when she was 10 months old because she was gaining no weight
and started having these little tiny seizures. Her eyes would go
crossed, and she would get pale. They were so alarmed by her lack of
growth that they admitted her on the spot. She was always smal, but
she hadn't gained any weight since she was 4 months old. That week is
such a blur. They scared us half to death. At first it was an
enlarged heart, then it was cystic fibrosis, then it was a protein
allergy, then it was Celiacs, then it was Turner's Syndrome, then
some other syndromes. We were a wreck. We had just brought her in for
a checkup. No one could figure her out - they put her down
as "failure to thrive" and she became a medcal mystery. As time went
on, things did not improve. She gained weight, but so much slower
than the growth chart said- she wasn't even on the bottom of the
chart. At a year, there was no sign of any language, not even
babbling other than an "aaah" sound. She had a battery of tests on
everything. For every test it seems like something was elevated or a
high count, but not enough to qualify for whatever it was they were
testing at the time. It was frustrating. But when te bone age test
came back - it was the first real sign that there was a genetic
issue. Her bone age was 3-5 months old at 13 months. Then they found
out she had an extra set of ribs, and some of her facial features
were noted. Finally someone ran it through a data base and came up
with eiter Floating Harbor or something else, I forget what. Ever
since then, they knew it was a genetics case. Recently we learned
that she has only 1 kidney, and a third nipple under her skin. She
has ankle braces for her feet, because her bones are very pliable. At
18 months, her bone age was 6- 8 months. At 2 years old it was 10-12
months. By that time I think they diagnosed her by process of
elimination. She reacted very badly to the growth hormone and she
seemed to always have alot of stomach problems. We researched
everything we could and became the doctors teachers in some ways. We
still had doubts in the back of our mind so we looked up the doctors
names in the research and found one of the ones at Boston who
discovered it. He is retired now, but took our case because we bugged
him so much. He was really the one that confirmed it for us.
Monica is fortunate I think among the Floating Harbor cases. It may
be that she is too young to tell yet, but she doesn't have any realy
prominent facial features. Although her nose seems to droop down over
time. Her eyes are huge and set back a bit - but they don't have that
tired wizened look. She looks more like a pixie or a fairie. She has
boundless energy and we have people helping us help her with sensory
integration problems. She seems to have some compulsive or obsessive
issues, but it is too early to tell. I can only say that she is a
handful sometimes. But she loves to sing. ( just "aaaah" but she
dances and lights up with music. The 2 big things that happened to us
that really helped was learning and then teaching her sign language.
She knows maybe 30 things, and the second one is we treated her as
if she had Celiac and removed most of the Gluten from her diet. Her
behavior changed pretty dramatically after that. She is still quite a
handful though. We can never tell how much of what she does is her
being a three year old, and how much is either Floating Harbor or
these other things. Now I just wish we had an answer to the seizures.
Do you know of any Floating Harbor children with seizures? Sometimes
she has 15 in a day, and then nothing for a month. In any case we are
so very thankful to have her. She is really something special.