Hi Claudia, I nearly fell off the chair when i found
the egruop for all of us with these special children.
I am really not sure what i ahve to do but i will have
ago, cause it gets pretty lonely all the way down
here.I have just set up a chat site with yahoo. All
you have to do is down load it and it will tell you
what to do. I will put your name on it as well as
Deana and we can all have a good chin wag(aussie talk
for chat)Mitchell is still the only one down under so
he drew the short straw and yes he has obsessional;
behaviour also and has done before the age of three.
Well i will catch you later and go and put your name
on my chat list Love Lyn
--- Claudia and Jim <jtenright@...> wrote:
> 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.
>
>


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