Note: forwarded message attached.


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Hi My Name is Lyn and i live in Tasmania Australia and i have a
seven year old son who is the only in Australia with FHS and i would
love to communicate with people of the same so please e-mail me when
ever and i will respond Lyn LEEDHAM--- In
floating_harbor_syndrome@y..., ba.humph@n... wrote:
> As there appears to be a little bit of interest in this page - only
> visits no meat - I thought I would start things off.
>
> My son has Floating Harbor syndrome as a suggested diagnosis. He is
> now 15 years old and this disgnosis was given at the age of eight
or
> nine.
>
> He had menigitis at eight weeks and this red herring complicated
the
> picture for quite some time. After many year of traipsing to the
> hospital for regular checks, monitoring of growth and other
> developmental pathways the consultant said it was just him!
> 
> However he started on growth hormone, again after lots of
> consultations  and visits to other specialists, when he was aged
four.
> He attended a main stream school when he was five and a half but
only
> for one term before, to my relief he was given a place at a
language
> unit. He stayed at the unit for the next five years where he
received
> regular speech and language therapy. He is deemed to be within the
> normal IQ range...... I think he must be at the low end of normal
to
> be honest. But he is not like other children I know deemed as
having
> moderate learning difficulties. I think for him the lack of
language
> has affected how he has taken up other learning.However he remains
a
> very unique indivdual and of course I am concerned about long term
> prospects.
>
> He has gone on from the local language unit to a residential school
> for children with speech and language disorders. We have always
veiwed
> the speech and language difficulties as being the major thing with
> him, probably because the diagnosis was quite late. Now we are at
the
> stage of looking at where next, as the school finishes at sixteen
and
> he is still very much in need of all sorts of support packages.
>
> He does all the things other children with Floating harbor do,
screws
> up his eyes in the sunlight, but goes brown quickly in the sun, has
> had problems with nasal fluids although this finally is improving
and
> is still sick approximately once a month.
>
> As for the growth.... at fifteen he is well through puberty and he
has
> reached about five foot one and we are hoping for a tiny bit more.
> Academically he really struggles with maths and can in no way mages
> money etc his reading is at aout the eight year old level but he
> tells us he likes writing stories. I could go on for ever and would
be
> delighted to talk/ chat to anyone who is interested.



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