Hi Claudia., Well apart from yesterday everything is going ok here
too, it was 12months yesterday since mum passed away so was down a
liitle bit more than i usually am thinking about her and boy do i
miss her she was my best friend. Question does Monica drift off in to
another world like she shuts everybody else out? Mitchell drifts off
in to another world and he is like that for days or sometimes he is
in such a bouncy mood then he can turn and by the way Mitchell has
sensory issues as well. He won't eat bread he will heave at ti he
smells a lot of things before he eats it he doesn't like the feel of
shop brought play dough he goes as white as a sheet and he nearly
vommits he doesn't like it when we hol him for too long anf there are
so many other things i just can't think of them yes just one more he
can't stand loud noises either he either runs and cries or he just
comes in side and won't go back out because he said he is scared ot
the lawn mower. Well sweetheart love to you and your family love from
Lyn*****

hi how's life treating you? --okay here the weather is started to get
beautiful and it is nice because monica loves playing outside. let's
see nothing really new this week so far thankGod. well I hope your
doing fine AND HAVE A NICE DAY:)





- In floating_harbor_syndrome@y..., l_leedham@y... wrote:
> HI Claudia, Well sweetheart i hope you like the photos i sent you i
> put them in the file thingy. I am so sorry to hear you are having a
> bad time allaround but i do know how u are feeling but i have not
got
> a little baby, so my heart goes out to u. If Monica is like
Mitchell
> they are very demanding little people and that is a fact. Mitchell
> always comes near the computer and he just can'r help himself he
just
> keeps touching the puter and he just has to ddo it all the time and
> no matter what we say he just does not listen. How far gone was you
> when you had your miscarriage Claudia because here in Australia it
is
> still the same thing and yes it is hard to cope with but time helps
> heal but you never forget the child or the moment of giving birth
and
> walking out of the hospital with empty arms knowing that you gave
> birth to a baby. Well beter go and get the washing off the line and
> then start thinging about getting some tea for the men in my life.
So
> look after yourself Claudia because if mum isn't happy the rest of
> the family will be bad as well. Lots-A-Love Lyn*****

HI Claudia, Well sweetheart i hope you like the photos i sent you i
put them in the file thingy. I am so sorry to hear you are having a
bad time allaround but i do know how u are feeling but i have not got
a little baby, so my heart goes out to u. If Monica is like Mitchell
they are very demanding little people and that is a fact. Mitchell
always comes near the computer and he just can'r help himself he just
keeps touching the puter and he just has to ddo it all the time and
no matter what we say he just does not listen. How far gone was you
when you had your miscarriage Claudia because here in Australia it is
still the same thing and yes it is hard to cope with but time helps
heal but you never forget the child or the moment of giving birth and
walking out of the hospital with empty arms knowing that you gave
birth to a baby. Well beter go and get the washing off the line and
then start thinging about getting some tea for the men in my life. So
look after yourself Claudia because if mum isn't happy the rest of
the family will be bad as well. Lots-A-Love Lyn*****

HI claudia, Here some photos they are in the file thingy, i am not
too good with computers yet but i am learning. WEll i will go and
send another bigger e-mail later have to do some work because it is
only 10.30 am in the morning here so have beds to make and washing to
do. Lots a Love Lyn*****************

hi lin, sorry to here about your mum. My dad has been sick too. I
can't wait to see mitchel. I am sorry you had a stillborn child that
must have been terrible. I had a miscarriage before ryan so I can
feel your pain sum what. we are really trying for our kids, I must
say though sometimes i want to run away and never come back,,,It is
so hard sometimes especially when there are big events. in order to
help monioca deal with things we bulit her steps so she can go up and
down, it has been a hard month for us too alot of stress going on.
with finances and marriage and 2 kids back to back. well i must tend
to the baby love to you to. do you watch soap operas? or opera? that
is the only thing i can say keeps me going love me


--- In floating_harbor_syndrome@y..., l_leedham@y... wrote:
> Hi Claudia, Sorry sweetheart that i never got back to u yesterday
but
> am pretty busy with the Mitchell and the school and organising a
fund
> raiser for Autism Awareness Week. Well thank u very much for the
> photos and yes u sure a right she is a real doll. MOnica and
Mitchell
> have the same facial features only Mitchell is a little fatter in
the
> face. Mitchell doesn't have seizures like Monica but as i said
before
> that could be due to her might having Autism(i am not trying to
scare
> u) so sorry if i am,but the behaviour of our two is very much
> Autistic and i don't care what any one says they can have both. The
> seizures can be a part of Autism. Well here is alittle bit about me
> 1. married to Brian for ten years,had three boys Nicholas who is 15
> and in his last year high then we Michael who was stillborn 10
years
> ago and then we had mitchell and of course u know about him. I used
> to care for my mum for five years after having mini strokes but my
> mum passed away 1st May last year so i am not loking forward to
that
> date. Brian works for Australia Post.My hobbies well i don't have
any
> but since we got the computer i find this  is my hobbie in a big
way
> i just love the puter as mitchell calls it.I am not religious but i
> have my own beliefs but it does not worry me who is that is
entirely
> up to the individual.So u can say that i love my family very much
and
> i will do everything in my power to help Mitchellget through and on
> with his life. Well sweetheart will get Nicholas to help me work
out
> to send u some photos. Love to u all Lyn*******

Hi Claudia, Sorry sweetheart that i never got back to u yesterday but
am pretty busy with the Mitchell and the school and organising a fund
raiser for Autism Awareness Week. Well thank u very much for the
photos and yes u sure a right she is a real doll. MOnica and Mitchell
have the same facial features only Mitchell is a little fatter in the
face. Mitchell doesn't have seizures like Monica but as i said before
that could be due to her might having Autism(i am not trying to scare
u) so sorry if i am,but the behaviour of our two is very much
Autistic and i don't care what any one says they can have both. The
seizures can be a part of Autism. Well here is alittle bit about me
1. married to Brian for ten years,had three boys Nicholas who is 15
and in his last year high then we Michael who was stillborn 10 years
ago and then we had mitchell and of course u know about him. I used
to care for my mum for five years after having mini strokes but my
mum passed away 1st May last year so i am not loking forward to that
date. Brian works for Australia Post.My hobbies well i don't have any
but since we got the computer i find this  is my hobbie in a big way
i just love the puter as mitchell calls it.I am not religious but i
have my own beliefs but it does not worry me who is that is entirely
up to the individual.So u can say that i love my family very much and
i will do everything in my power to help Mitchellget through and on
with his life. Well sweetheart will get Nicholas to help me work out
to send u some photos. Love to u all Lyn*******

hi lin,
I put pictures in the files on the side. they are of ryan and monica
now monica is 3 and ryan is 7 months old? does mitchell have
seizures? monica does but not bad one she isn't being treated for
them yet...........well i will send you some of my husband and me
also as soon as i figure out how.how many kids did you say you had?
how old are you? I am 33 and I have 2 I live in binghamton ny
and I hate winter. does it snow there maybe i'll move to england
what's it like there. do you have any hobbies. I used to love to sing
and take acting lessons. I have a degree I am going to finish
eventually in communications media arts. I still don't know what i
want to be when i grow up.....lets see. I love horses and eventually
would like to live in the country. tell me about yourself. oh yeah i
am breastfeeding and it's wionderfull Monica wouldn't when she was
a baby. she has alot of feeding issues she hardly eats anything and
she has sensory issues with touching. we have been working with the
therapists. does mitchell talk? monica hardly does she says momma and
gaga. ba ba some small words. she has an aumentative taker and she
does sign launguage. she is a cutey though well talk to ya soon love
me

hi lin and family, do you have any pictures of mitchell? I am going
yo try and send a picture to you so you can see him. your a smoker? I
used to be a smoker but now I am spoke free and trying to stay sane
but have panic attacks. I can't wait to some day meet you in person
and our kids can play together how old is mitchell? monica is 3 and
very skinny I wish i wAs........so here you go I am going to try and
send a picture love to you and yours claudia


--- In floating_harbor_syndrome@y..., l_leedham@y... wrote:
> Hi Claudia, Jim& Family, Well Claudia don't ever apologise for
> swearing when you send me an e-mail because i swear all the time
and
> that is exactly what i say even to one of the Dr.s i know. Fancy
> people asking if you did drugs or drink gee we must be bad because
i
> have a chils who is the same. You could turn around and say what
> drugs do you think i was on and see if they say anything then. Look
i
> smoke and that sure as didn't cause FHS, people are so narrow
minded
> it's just not funny any more. It's always easier for people to try
> and blame some one or something cause if they can't see it they
just
> don't care, and i agree our children are and always will be very
> special people no matter what problems they have. No Claudia
Mitchell
> doesn't have only one kidney nor does he have more than two nipples
> so my heart goes ou to you. Well sweetheart keep your chin up and
> keep on smiling and yes i agree with what you say "FUCK THE LOT OF
> THEM" All my Love Lyn******

Hi Claudia, Jim& Family, Well Claudia don't ever apologise for
swearing when you send me an e-mail because i swear all the time and
that is exactly what i say even to one of the Dr.s i know. Fancy
people asking if you did drugs or drink gee we must be bad because i
have a chils who is the same. You could turn around and say what
drugs do you think i was on and see if they say anything then. Look i
smoke and that sure as didn't cause FHS, people are so narrow minded
it's just not funny any more. It's always easier for people to try
and blame some one or something cause if they can't see it they just
don't care, and i agree our children are and always will be very
special people no matter what problems they have. No Claudia Mitchell
doesn't have only one kidney nor does he have more than two nipples
so my heart goes ou to you. Well sweetheart keep your chin up and
keep on smiling and yes i agree with what you say "FUCK THE LOT OF
THEM" All my Love Lyn******

I think I got alittle bit of obsessive disorder to.....hmm two of a
kind. I do love my life though and monica. we just found out monica
has one kidney and a thrird nipple  does mitchell have 2 kidneys?
Interesting huh.....yes there always something. I like what you said
about chin up i WILL TAKE YOU UP ON that. jims mom asked me today if
i did drugs or drank while i was pregnant with monica. you know in
alot of ways PEOPLE STILL blame me, but what i do know for sure is
that i claudia enright have the most special child in the world and
that you lin have one too, so fuck them all excuse the french lots of
love to your family too. I hope i can get to your part of the world
soon it would be fun. do you have any relatives in the states? come
visit. love me

hi Claudia,Jim&Family, Well sweetheart u sound like u are down but
gee I know exactly how u are feeling. Well lets see the Panic attacks
i suffer with Obsessive Compulsive Disorder and yep guess what
Mitchell is my Obsession, so it is quite normal and having a young
baby would not help u at all. The string thing i have been in to a
chat site and have talked about the syndrome that our kids have, so i
just tell them to look at Deana's web site,. I have talked to a lot
of people including a woman who is studying her PHD at University,
and she also has ASberger's her self, because Autism is such a wide
spectrum disorder.I have beeeen searching about Autism and other
syndromes and i have no doubt in my mind that Autism is a part of
FHS. So that is why i am having Mitchell assessed in May. The odd and
hyperkinetic behaviour is exactly the same as Autism. No medical
person or another person will tell me otherwise i think Mitchell will
be diagnosed as having FFHS and High Functioning Autism which is a
lot better than him having severe Autism. As far as the  so called
people who are your friends Claudia if they were true friends they
would try to understand Monicas condition, i have the same trouble
here and i have found my friends in different areas because the old
ones just don't know are scared of the syndrome and plus they just
have not got the time for some one who has a child with a
disability.Well sweetheart as my mum would've said to me Keep your
chin up walk tall and keep on smiling. Lots of Love to you and all
the family From Lyn*****

hi monica has obsessions with string, and she has to have the whole
bags of stuff and she goes up and down steps.oh no puberty man God
bless you. I have a 7th month old who is still breatfeeding and I
don't know if I am coming or going. I have been having panic attacks.
yippee. The doctor gave me serafem for pms but I haven't taken it yet
I am afraid  ..........I have been having alot of trouble with
friendships too. it's like I always feel like I have to explain
monica to people. I pretty much am alone alot with hubby. there are
so chats online and some groups here but sometimes i feel like I can
vent better with people that understand. I hope someday you and i
meet.
monica is getting a phys evaluation and I mentioned autism as
secondary problem also. well write soon love you claudia

Well Claudia, Thanks yes it is deffinatly tying but yes we are
hanging in there and the problem is everyone says here oh he looks
normal or gee he is bright being bright and knowing what people are
saying to him is totally two different things. He is always trying to
touch the computer while i am on it he just does not realise that he
shouldn't be doing things like that. He has obsessions with
calendars, clocks, and calendars has to have them all the time. So
the eldest Nicholas he is going through puberty and gee that makes
things harder as well he just does not understand nor does he wan't
about Mitchell, but we will keep ontrying with them both. Love to you
all Claudia, Love from Lyn*****

Hi Lyn,
I thought monica had autistic tendancies too. I don't think she has
autism but she has certain characteristics thats for sure.....If I
keep her on certain foods she seems and acts like a normal child if I
don't that is when we notice her repition. Sorry to here about
mitchell but he is a blessing. I hope your hanging in there I know
how tough it is to have our children that are different.I will talk
to ya soon love claudia

Hi Claudia,Jim, and Monica, Well Claudia i will be having Mitchell
assessed for Autism in May so i will let you know about how we go. I
wen to an Autism forum the other night and listened to this woman who
has Asbergers whicis Autism only a different name, so i asked her
some questions about Autism. I told her that Mitchell has FHS and she
said that it is definate that he could also have autism as well. She
said that FHS is his primary diagnoses and that Autism is his
secondrary so it looks like he is. Mitchell has strange things that
he does so i thought it was apart of FHS but then his teacher
mentioned autism to me so i went and seen some professionals and he
had a CARS done he rated 34 which is between mild and moderate on the
scale for autism. And after listening to this woman and asking a few
questions and i fully believe now that he is autistic. She said that
it is hard for us as parents to get a diagnoses straight away so we
just have to keep trying which i have been doing for nearly two
years. So hopefully we will know on May the 21st and 22nd. Well
Claudia Mitchell wan'ts his tea so i will love ya all yill next time.
Bye for now LYN***

I have a couple of questions for you. I thought my daughter is
autistic too. we put her ona gluten and milk and sugar free diet and
things changed. I think it's in her diet that causes repetition.
monica sleeps with us too so we understand and boy does she move all
over the place.But it's either crying or screaming or peace so we
choose peace now. well I will talk soon going to church love claudia

Hi Claudia, Deana told me you were out of town so i undrestood that
hs we take a lot of trips away from where we live as Brian's family
live two hours away from us. Mitchell is starting to settle into
school now so that is a blessing and yes Mitchell is on the go too so
i know what you mean and it gives me time to get things done around
the house. Mitchell is going to be assessed for Autism in May as we
think he is autistic but i was told it could be associated with FHS
so we have not got any one that is fully qualified to assess him for
Autism in Tasmania so the lady or the Dr. is coming from Melbourne in
Victoria to do it. He is having a hard time as he has been sleeping
with us and now we have put him in his own bed mind you it is right
next to ours so we will see how he goes. I am on ICQ and also Paltalk
we can actually voice chat on Paltalk and i am also on MSN so you can
also reach me on my e-mail which is l_leedham@.... I did find
out that we are 16 hour's ahead of you in New York so we will have to
set a time so we don't lose any sleep and that it fits in with
children. So i will catch you next time. Lots-A-Love Lyn Leedham****

yes I would love to chat it's claudia, you let me know when yes.
monica is on he go too alot non-stop like the energizer bunny.how is
mitchell adjusting to school? monica loves it.and we love it too it
gives me a break i also have a 6 month old so i am busy busy, and
tired well let me know when you want to chat talk to ya soon god
bless claudia

Hi Claudia and Jim and Monica, How is every thing going/ I had an e-
mail from Deana and she said that you had been out of town, so that
explains why i haven't heard from you. Mitchell is going along
allright at the moment thank god for that because he is a real goer
so he can keep every one on their toes but he is at school today so
he is not real happy about going to school for five days a week he
thinks he should stay at home

I hope you can e-mail me back and we can organise a time to chat with
who you wan't i really like doing that. What time is it New York it
is 12.00 midday here the 27th March it is a Tuesday. Well people(just
a saying) i hope to hear from you real soon please. Love Lyn
Leedham****

Hi Claudia and Jim and Monica, How is every thing going/ I had an e-
mail from Deana and she said that you had been out of town, so that
explains why i haven't heard from you. Mitchell is going along
allright at the moment thank god for that because he is a real goer
so he can keep every one on their toes but he is at school today so
he is not real happy about going to school for five days a week he
thinks he should stay at home

I hope you can e-mail me back and we can organise a time to chat with
who you wan't i really like doing that. What time is it New York it
is 12.00 midday here the 27th March it is a Tuesday. Well people(just
a saying) i hope to hear from you real soon please. Love Lyn
Leedham****

--- In floating_harbor_syndrome@y..., l_leedham@y... wrote:
> --- In floating_harbor_syndrome@y..., "Claudia and Jim"
> <jtenright@h...> wrote:
> > Hi Lynette, this is Jim, Claudia's husband. Hey, what is the
offset
> > in US Eastern time and Australian time, do you know? If it's 7:00
> PM
> > in New York, do you know what time it is there? Claudia would
love
> to
> > chat sometime, but I thought it might be the middle of the night
> here
> > if it is morning there. Do you know? I don't know if thelast
message was sent so you will have to let me know so the time
differance is New York is 16 hours behind us so just let me know i
won't write any more just in case the last e-mail was sent love from
Lyn Leedham

--- In floating_harbor_syndrome@y..., "Claudia and Jim"
<jtenright@h...> wrote:
> Hi Lynette, this is Jim, Claudia's husband. Hey, what is the offset
> in US Eastern time and Australian time, do you know? If it's 7:00
PM
> in New York, do you know what time it is there? Claudia would love
to
> chat sometime, but I thought it might be the middle of the night
here
> if it is morning there. Do you know?

Hi Lynette, this is Jim, Claudia's husband. Hey, what is the offset
in US Eastern time and Australian time, do you know? If it's 7:00 PM
in New York, do you know what time it is there? Claudia would love to
chat sometime, but I thought it might be the middle of the night here
if it is morning there. Do you know?

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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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.

--- In floating_harbor_syndrome@y..., "Claudia and Jim"
<jtenright@h...> wrote:
> Myname is claudia enright and my daughter has floating harbor
sydrome.
> she is 3 years old. My daughter also has seizures. she attends a
> special school and is very musically inclined. 5 foot tall that is
> great is your son really thin? My daughter is. my daughter also
hates
> to be touched and is constantly on like the energizer bunny the
poor
> thing. she also has only one kidney. monica doesn't talk much at all
> nothing clearly except mama and baba. and go. she signs and has a
> talking machine. My husband will write more tomorrow. thanks
claudia
> enright  Hi i am repling to your e-mail, my son has Floating Harbor
Syndrome as well . My e-mail address is l_leedham@...

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.

Myname is claudia enright and my daughter has floating harbor sydrome.
she is 3 years old. My daughter also has seizures. she attends a
special school and is very musically inclined. 5 foot tall that is
great is your son really thin? My daughter is. my daughter also hates
to be touched and is constantly on like the energizer bunny the poor
thing. she also has only one kidney. monica doesn't talk much at all
nothing clearly except mama and baba. and go. she signs and has a
talking machine. My husband will write more tomorrow. thanks claudia
enright

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.