Hi Guys, I am not sure if this too late but i too have a child with
FHS and i live in Tasmania, Australia.
His name is Mitchell and was dx in 1998 with FHS and was alos dx
with Autism last year, I am a bit confused as there is another yahoo
group with FHS ppl on it too. I am alos a part of the support group
in USA, i hope to keep in touch with you both Hgus Lyn













-- In floating_harbor_syndrome@y..., anne dight <annedight@y...>
wrote:
> Hi Rana
> I am pleased that you contacted me. my daughter Rosy
> is 7 and she was diagnosed when she was four with fhs.
> she had, and still has the things that you wrote
> about. she goes to a mainstream school and is doing
> ok. she also has significant speech delay and
> generally is slower all round than others her age. her
> health ok ok now, but when she was younger had lots of
> respiratory problems and and has just been put on the
> list for her 4th set of grommits. she is lovely and
> beautiful and gorgeous just the same. Is Tequela your
> first child. Rosy has a 10 yo sister and a 15 yo
> brother.
> a geneticist from wellington came down to see her and
> diagnosed her almost straight away, because of the
> physical features. unfortunately, not a lot is known
> about fhs and it is good to talk to others as alot of
> people find it hard to accept the behaviour stuff that
> drives us insane at times!!!!
> I am currently visiting family in Australia, so i'll
> chat more when i return next week. there are 4 other
> chn in nz that i am aware of, i have met one girl in
> Palmerston North and spoken with another mother in
> wellington.
> Catch up soon
> Anne
> --- pebbles2162001 <pebbles2162001@y...> wrote:
> > hi my name is rana i to live in the south island in
> > ch ch we r still
> > waiting for a diagnosis for my 2 year old daughter
> > tequela rose from
> > what i have read up about this it sounds a lot like
> > what my daughter
> > has i am waiting for another visit to the doctors so
> > i can ask if he
> > has tested her for it as we have been waiting since
> > she was 5 months
> > old for an answer i hope u dont mind if i wrote some
> > off her simdoms
> > down to see if there r any simularates
> > ok she is delayed in all areas more speech she
> > seems to understand
> > what i am saying but just does nt talk she has a lot
> > of body hair
> > from head to toe she has bad temper spits bites and
> > screams and very
> > demanding she has a large liver and spline her
> > facial fethers are lot
> > diffrent than ours she she looks alot older than her
> > age but she is
> > very short she also has a lot off rinkles on her
> > legs so i guess that
> > is about it for now and also how did the docs find
> > out that your
> > daughter had that as tequela has been throght a
> > number off test we r
> > just waiting for a mri hope i don t sound to pushy
> > thanku rana
> >
> >
>
>
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