THE OFFICIAL NEWSLETTER OF THE FHS SUPPORT GROUP
Stimulate Their Brains
As a teacher it amazes me how
the children who have spent
time putting together puzzles,
looking at pictures in books,
doing flash cards, or playing
with farm animals and making
animal sounds seem to excel in
the early years when it comes to
learning. It becomes very
obvious which parents have
spent time reading to and asking
their children questions, and
which parents have simply let
their children play for long hours
alone, or have let them sit for
too long in front of a television
or computer. While some
computer games and activities
can be worthwhile, they cannot
replace time spent with a parent
actively stimulating their brains.
More on this in the next issue.
Maxine, Age 9
Our daughter, Maxine, was
diagnosed with FHS when when
she was eighteen months old. She
just turned nine in August. She
was a very happy baby, although
she didn’t feed very well and did
awful on solids. He height and
weight dipped
from the age of
six months on,
and she dropped
from the 50th
percentile on the
growth charts
down to the
2nd. We were
referred to a geneticist who
diagnosed Maxine with FHS.
Over the next few years we
had a lot of help from professionals
within the teaching profession who
picked up very quickly on the
speech and communication issues.
It took a few years, but Maxine has
additional funding approved that
allows her full time
assistance in school.
When she began
school at the age of four
she couldn’t speak at all
except for a few odd
words. We had learned
Makaton sign language
when she was three, and that was
how we began communicating
with her.
Maxine stopped the signing
within a year of school, and has
progressed from there. Her speech
is not perfectly clear, but enough
for strangers to understand her.
She is way behind the others in
school, but is progressing well for
her abilities. She is very bright, but
has a really short attention span,
and bounds of energy, so it is hard
getting her to concentrate on
anything for a great deal of time.
She has an excitement and energy
for life that puts anyone to shame.
She is a true joy to those who know
her.
I suppose our main concern for
Maxine as she grows older and
becomes more aware that she is
“different”, is how to support her.
I have found the FHS
newsletters so comforting. I wish I
had asked for all the back issues
sooner. There are a few common
concerns that seem to come up
often.
Eyes - Maxine was born with
both of her eyes turned inward
(strabismus), and her corrective
surgery at the age of seventeen
months. She is still being
monitored by the eye specialist
who originally did the operation.
He did explain that her eyes will
never work “together”, but
separately, which will have an
impact on her depth perception.
As such, she has never been very
good at things like catching a ball.
Co-ordination/motor skills -
Maxine also struggles with riding a
bike. Initially it was a size issue,
but even as she is older now, she
doesn’t seem to get the “keep
peddling forward” idea. She does
love swimming as well as wall-
climbing.
Hyperactivity - I try and make a
point of taking Maxine for regular
“burn off” sessions at indoor play
centres; literally so that she can run
until she tires herself out. I used to
find this very helpful in the earlier
years. And even now I try and
make a point of some physical
activity (running, swimming) to
burn off excess energy. I have
found that, despite all the energy,
she is quick to tire in activities like
swimming. She struggles to make
the distance that others in her class
can.
Sleeping patters - This has
been awful for many years. She is
so clever at trying to procrastinate
going to sleep! And then she often
wakes up in the middle of the
night and sneaks downstairs to play
on the computer or watch TV. She
is not very happy when she has to
go back to bed, and often she will
not go back to sleep. She is
absolutely impossible if she’s had a
bad night.
Feeding/Eating - Maxine never
took to my feeding her naturally.
Even when I switched to bottled
milk, she could never drink more
than two ounces at a time. That
meant a lot of small feedings, or
otherwise it all came up. She has
never liked lumps in her food. I
initially got her eating yoghurt, as
well as mashed potato and
vegetables with cream cheese
mixed in. This is still one of her
favorite dishes. She adores pasta.
I can’t tell you the relief I had
when she finally started eating
sandwiches! She does love eggs on
toast for breakfast.
Nose and Ear Problems -
Maxine had her adenoids removed
about 4 years ago, and her speech
improved greatly overnight, as did
the drippy nose. She is still prone
to colds, affecting mainly her nose,
but they are much shorter lived
than before. Her hearing is good-
I would say that she has quite
sensitive hearing, often
complaining if something or
someone is making too much noise.
I do find if she feels poorly, she gets
temperature spikes which cause her
to vomit during the night. These
only seem to happen when she is
very hot.
Speech/Learning Makaton -
This was key for Maxine. Initially,
because she loved music and
nursery rhymes, she was taught
“Old McDonald’s Farm.” The
picture cards have also been
helpful. She has an excellent
memory and enjoys playing
memory games. She talks quite
well now. Her speech is nt
perfectly clear, but good enough
for most strangers to undertand.
Interests: Maxine LOVES
computers. Currently, Nintendo.
If she gets stuck with a game, she
goes to YouTube and looks the
game (where people have posted
tips and “walkthroughs”) and she
watches that to learn how to get to
the next part in her game. I don’t
know where she thought to do that!
School - Maxine attends a
mainstream school, but has full-
time support, as well as an
Individual Education Programme
with targest, which are reviewed
biannually. She has always
struggled with hand-writing. She
has been held back a year, but it
has allowed her to “git in” better
with her peers, even though she is
a bit older than them. They are
very accepting of her ways, and
miss her when she is sick or not
there. (They say it is very quiet!)
Growth - Maxine is monitored
by Endocrinologists who have been
very supportive and relaxed --
mapping her growth according to
her bone age more than her
chronological age. They didn’t
think Maxine would need growth
hormones. At our last visit she was
115 cm tall and weighed 22.5 kgs,
moving her to the 0.4th percentile.
She turned 9 this year and has
continued the growth spurt. She
has gone up two shoe sizes to a 10,
and and now fitting age 7 trousers/
age 8 shirts. I’ve had several
parents comment how she’s shot
up over the summer.
She is very sensitive to bright
light. We’ve never had her on any
medication for anything- an iron
supplement a while ago, but that is
it. We tried Melatonin to help her
sleep, but it made her REALLY
sluggish during the day. We didn’t
like the effect it had on her at all.
Behaviour - Apart from being
super- energetic, Maxine is happy
for the most part. She has a short
attention span. She has some
“wobbl y” days wi th
uncharacteristically aggressive
behaviour, but normally following
a bad night and something that
had upset her prior to the actual
incident. She is fearless, and
always has been, constantly
bruising herself by running or
bumping into things. She does like
to get hew own way, and can be
quite grumpy if she can’t. I am
finding, as she is getting older, that
her temper is getting much worse.
I am seeing tantrums like I ahven’t
seen for many years. This is quite
scary for me.
_______________________
More info on FHS is also available at:
www.floatingharborsyndromesupport.
blogspot.com Also available: A
collection of all 10 years of Safe
Harbor news-letters. $ for US, $40 for
all other countries due to postage.
THANKS
Many thanks to Sam
Hovell and the Jeff
Swanson family who
generously donated to
sponsor this issue of
Safe Harbor.
If anyone is interested in donating
toward this expense, you may do so
via Paypal to:
deana@floatingharborsyndromesu
pport.com
Jesse, 17, America
Jesse recently turned 17. He is
in high school. He is in a
regular science and history
class, and is doing 3rd grade
math and 6th grade language
arts. He continues to enjoy
cars and computers. He loves
to read and is learning
keyboarding and music theory
nnn
Showing posts with label updates. Show all posts
Showing posts with label updates. Show all posts
Tuesday, April 17, 2012
February 2010 Safe Harbor
THE OFFICIAL NEWSLETTER OF THE FHS SUPPORT GROUP
The medical study on Floating
Harbor syndrome is underway.
The families who were
interested in participating
should have already received
their packet of information and
a questionnaire to fill out. Two
support group
members (the
Fiorenzas and
Swansons) met
with the
geneticists at
JH in January
and were
impressed with their both their
interest in, and desire to learn
more about FHS.
At this point only FIVE (out of
the 27 of you who signed up to
participate) have returned the
survey. Please, please, please
complete them and send them
in. It is OK if you don’t know
or remember all the
information, just fill
out what you can and
send them to Johns
Hopkins.
If you are interested in
participating or are new
to the group and have
NOT received your packet please
contact us as soon as possible.
Please note: You must have an
official diagnosis from a geneticist.
Aurore, 12, Belgium
Aurore is 12 years old. She
was born on August 13, 1997.
She attends a special school,
has severe language delays,
and can’t read. She likes to
watch television, play on the
computer and play video
games.
FHS and Delays
Delays seems to be a common
word associated with FHS. Just
about everything is delayed;
speech, growth, height,
development, and the list goes on.
At first this really bothered me, but
I soon learned that if I was just
patient everything would happen
in its own good time. I think it
would be wise if we , as parents,
applied this to our children in
medical aspects as well. Take
puberty for instance. Instead of
worrying and giving our children
extra hormones and medicines,
what if we just patiently waited?
We did this with our son and here’s
what happened. He DID go
through puberty, although it was at
an age about 4-5 years later than
his brother. Later is fine with us--
better than trying to “artificially”
induce things that will happen in
their own time anyway.
Update on Jesse
Jesse is doing well and has
surprised us with how well he’s
adapted to his new school. Both
my husband and I are teachers at
his school, so in a way things
haven’t changed that much.
He just turned 16 and is doing 5th
grade language arts and 3rd grade
math, and 6th grade science and
social studies. He continues to
struggle with his spelling, but gets
enough of the letters correct so
that we can figure out what he is
writing. He is also working on two
different slide shows, one of our
farm we just moved away from to
our new jobs here in Pennsylvania
teaching, and the other of activities
around the school. He amazes me
with how much he knows about
the Keynote software. He often
helps us at home and at school
when we run into a computer
problem. (Photo-- Jesse at 15 with
brother Levi, 5)
Photo: Giovanni in Brazil
NEXT ISSUE We are currently
planning on publishing two issues a
year. If you have any updates, pictures
or stories about your FHS children
please submit them to the email below.
littleflock7@gmail.com
The medical study on Floating
Harbor syndrome is underway.
The families who were
interested in participating
should have already received
their packet of information and
a questionnaire to fill out. Two
support group
members (the
Fiorenzas and
Swansons) met
with the
geneticists at
JH in January
and were
impressed with their both their
interest in, and desire to learn
more about FHS.
At this point only FIVE (out of
the 27 of you who signed up to
participate) have returned the
survey. Please, please, please
complete them and send them
in. It is OK if you don’t know
or remember all the
information, just fill
out what you can and
send them to Johns
Hopkins.
If you are interested in
participating or are new
to the group and have
NOT received your packet please
contact us as soon as possible.
Please note: You must have an
official diagnosis from a geneticist.
Aurore, 12, Belgium
Aurore is 12 years old. She
was born on August 13, 1997.
She attends a special school,
has severe language delays,
and can’t read. She likes to
watch television, play on the
computer and play video
games.
FHS and Delays
Delays seems to be a common
word associated with FHS. Just
about everything is delayed;
speech, growth, height,
development, and the list goes on.
At first this really bothered me, but
I soon learned that if I was just
patient everything would happen
in its own good time. I think it
would be wise if we , as parents,
applied this to our children in
medical aspects as well. Take
puberty for instance. Instead of
worrying and giving our children
extra hormones and medicines,
what if we just patiently waited?
We did this with our son and here’s
what happened. He DID go
through puberty, although it was at
an age about 4-5 years later than
his brother. Later is fine with us--
better than trying to “artificially”
induce things that will happen in
their own time anyway.
Update on Jesse
Jesse is doing well and has
surprised us with how well he’s
adapted to his new school. Both
my husband and I are teachers at
his school, so in a way things
haven’t changed that much.
He just turned 16 and is doing 5th
grade language arts and 3rd grade
math, and 6th grade science and
social studies. He continues to
struggle with his spelling, but gets
enough of the letters correct so
that we can figure out what he is
writing. He is also working on two
different slide shows, one of our
farm we just moved away from to
our new jobs here in Pennsylvania
teaching, and the other of activities
around the school. He amazes me
with how much he knows about
the Keynote software. He often
helps us at home and at school
when we run into a computer
problem. (Photo-- Jesse at 15 with
brother Levi, 5)
Photo: Giovanni in Brazil
NEXT ISSUE We are currently
planning on publishing two issues a
year. If you have any updates, pictures
or stories about your FHS children
please submit them to the email below.
littleflock7@gmail.com
Safe Harbor November 2008
Safe
Victoria, France, age 14 Harbor
Thank youvery much for the last issue. It is
.
nice to have news about the other children
.
Victoria is doing very well. She is 144 cm
.
high inches and weighs 36 kgs
( )
pounds She goes to school in a special
( ).
class . She reads, not very well, but she
.
understands whatever she reads She
.
goes to school 4 days a week. She starts
.
from the house at 700 am and returns at
: . .
500 pm. She loves football soccer ,
: . . ( )
cars,bicycles and her cat,“Charley” .
.
She has no health problems,only some
eye and teeth troubles. We go to the
.
dentist twice a year.
.
Victoria loves to laugh,she has a sense
of humor . She loves her sisters It is
. .
difficult for her during the week because her
first sister NelaniegoestoNautestothe
university, and her second sister goes to
LaRoche for high school. They come back
.
to the house at the end of the week
.
Victoria misses them the 5 days
during the
week . This year she wants to play
.
basketball. She watches the NBA on the
.
television. Best regards, Danielle SUJEVIC
Jordan, age 9, Canada
Jordan is doing really well. He has a
wonderful Educational
Assistant and team around him that truly
care about him. He is loved by
his classmates and schoolmates. He is
working very hard in school these
days. He is very committed to learning
what his friends are learning.
Jordan played indoor and outdoor hockey
in Carp last season. He usually
plays on the same team as his little
brother. We are very proud of how
well he is doing.
He is an avid NHL Senator's hockey fan.
He will watch any game, at any
hour of the day. He played soccer during
the summer and his team won the A
Final at the end of the season. He's never
afraid to get in the game. I
guess he has accepted that he is always
the smallest one on the team!
We are still using sign language with
him, although, the speech has really
improved this year.
Take care and thank you for doing the
newsletters. I really look forward
to them. Kim
Update on Connor, UK age 3
Connor is doing well and started his special
needs school recently. It went really well
and he has settled in better than we
thought. Although the school doe not have
a uniform we have made one for him, that
way he can
associate the uniform with getting ready for
school.
Really wanted to thank you for the
suggestion about introducing the Down
Syndrome diet. Connor now has rice milk,
flavoured with a bit of milk shake powder.
We have introduced vitamins, amino acids
and a different food diet. The results have
been incredible, no more nasal
congestion, mucus, running nose, dribbling
from the mouth. He has a better diet and
appears to be more hungry, his sleep is
getting a bit better and seems more alert.
Funny thing is when we told the audiologist
who conducted a routine hearing test
last week, she was amazed how the diet
effected Connor. He has had no ear
infections, no excess wax, mucus, cold,
running noses and the list goes on.
I guess people have to try it to see for them
selves, but hey, we are proof
that it works.
Connor seems more relaxed and less
bothered by things around him. Also he is
more vocal,
something we have put down to the
vitamins and amino liquids. Everything we
have given him as part of the diet is
considered as “brain food” in England.
Sophie, The Netherlands
55 Member Families
Austrailia 1 Brazil 1
Canada 4 France 1 Greece 1
Ireland 2 Israel 1 Italy 1
The Netherlands 2 Portugal 1
Scotland 1
USA 21 UK 17
Age & Growth Hormone Therapy
The two questions I get asked most often are
about the expected age for adults with Floating
Harbor, and about Growth Hormone. I will try
and answer these two questions here by giving
as many facts as we have.
First of all, we were recently contacted by a
family in Scotland. They have a man in the
family with FHS who is 52. He lives in his
own flat (apartment) with some assistance and
works washing dishes in a pub. Previously,
the oldest known FHS patients were in their
late 30s, so this was very interesting
information indeed. We will try and get an
article about him for the next issue.
Secondly, here are some facts about growth
hormone. FHS adults end up between 4 feet 6
inches and 5 feet 2 inches tall. ( 137-157 cm.)
Even after years of the shots they don't get any
taller than the above statistics. They WILL
have what the doctors call an “initial growth
spurt” and grow at a faster rate on the shots,
but the end results are still the same, they just
get there faster. Children whose parents are
taller (around 6 feet or 180 cm) will end up on
the taller end of the FHS spectrun (5 feet or
152 cm), while children whose parents are
shorter (around 5 feet or 152 cm) will end up
on the shorter end of the FHS height spectrum
(4 feet 6 inches or 137 cm). There have also
been members of our group who have
discontinued the shots because of undesirable
“side effects” which were not a normal part of
FHS The parents thought perhaps these were
side effects from the growth hormone therapy.
There have been parents who were happy with
the growth that their children achieved while
on the GH, but again, medical research cannot
prove that it makes the children any taller in
the end.
Victoria, France, age 14 Harbor
Thank youvery much for the last issue. It is
.
nice to have news about the other children
.
Victoria is doing very well. She is 144 cm
.
high inches and weighs 36 kgs
( )
pounds She goes to school in a special
( ).
class . She reads, not very well, but she
.
understands whatever she reads She
.
goes to school 4 days a week. She starts
.
from the house at 700 am and returns at
: . .
500 pm. She loves football soccer ,
: . . ( )
cars,bicycles and her cat,“Charley” .
.
She has no health problems,only some
eye and teeth troubles. We go to the
.
dentist twice a year.
.
Victoria loves to laugh,she has a sense
of humor . She loves her sisters It is
. .
difficult for her during the week because her
first sister NelaniegoestoNautestothe
university, and her second sister goes to
LaRoche for high school. They come back
.
to the house at the end of the week
.
Victoria misses them the 5 days
during the
week . This year she wants to play
.
basketball. She watches the NBA on the
.
television. Best regards, Danielle SUJEVIC
Jordan, age 9, Canada
Jordan is doing really well. He has a
wonderful Educational
Assistant and team around him that truly
care about him. He is loved by
his classmates and schoolmates. He is
working very hard in school these
days. He is very committed to learning
what his friends are learning.
Jordan played indoor and outdoor hockey
in Carp last season. He usually
plays on the same team as his little
brother. We are very proud of how
well he is doing.
He is an avid NHL Senator's hockey fan.
He will watch any game, at any
hour of the day. He played soccer during
the summer and his team won the A
Final at the end of the season. He's never
afraid to get in the game. I
guess he has accepted that he is always
the smallest one on the team!
We are still using sign language with
him, although, the speech has really
improved this year.
Take care and thank you for doing the
newsletters. I really look forward
to them. Kim
Update on Connor, UK age 3
Connor is doing well and started his special
needs school recently. It went really well
and he has settled in better than we
thought. Although the school doe not have
a uniform we have made one for him, that
way he can
associate the uniform with getting ready for
school.
Really wanted to thank you for the
suggestion about introducing the Down
Syndrome diet. Connor now has rice milk,
flavoured with a bit of milk shake powder.
We have introduced vitamins, amino acids
and a different food diet. The results have
been incredible, no more nasal
congestion, mucus, running nose, dribbling
from the mouth. He has a better diet and
appears to be more hungry, his sleep is
getting a bit better and seems more alert.
Funny thing is when we told the audiologist
who conducted a routine hearing test
last week, she was amazed how the diet
effected Connor. He has had no ear
infections, no excess wax, mucus, cold,
running noses and the list goes on.
I guess people have to try it to see for them
selves, but hey, we are proof
that it works.
Connor seems more relaxed and less
bothered by things around him. Also he is
more vocal,
something we have put down to the
vitamins and amino liquids. Everything we
have given him as part of the diet is
considered as “brain food” in England.
Sophie, The Netherlands
55 Member Families
Austrailia 1 Brazil 1
Canada 4 France 1 Greece 1
Ireland 2 Israel 1 Italy 1
The Netherlands 2 Portugal 1
Scotland 1
USA 21 UK 17
Age & Growth Hormone Therapy
The two questions I get asked most often are
about the expected age for adults with Floating
Harbor, and about Growth Hormone. I will try
and answer these two questions here by giving
as many facts as we have.
First of all, we were recently contacted by a
family in Scotland. They have a man in the
family with FHS who is 52. He lives in his
own flat (apartment) with some assistance and
works washing dishes in a pub. Previously,
the oldest known FHS patients were in their
late 30s, so this was very interesting
information indeed. We will try and get an
article about him for the next issue.
Secondly, here are some facts about growth
hormone. FHS adults end up between 4 feet 6
inches and 5 feet 2 inches tall. ( 137-157 cm.)
Even after years of the shots they don't get any
taller than the above statistics. They WILL
have what the doctors call an “initial growth
spurt” and grow at a faster rate on the shots,
but the end results are still the same, they just
get there faster. Children whose parents are
taller (around 6 feet or 180 cm) will end up on
the taller end of the FHS spectrun (5 feet or
152 cm), while children whose parents are
shorter (around 5 feet or 152 cm) will end up
on the shorter end of the FHS height spectrum
(4 feet 6 inches or 137 cm). There have also
been members of our group who have
discontinued the shots because of undesirable
“side effects” which were not a normal part of
FHS The parents thought perhaps these were
side effects from the growth hormone therapy.
There have been parents who were happy with
the growth that their children achieved while
on the GH, but again, medical research cannot
prove that it makes the children any taller in
the end.
The Newsletter of the
Floating Harbor Syndrome Support Group
July 2008 Issue # 18
Connor, UK age 3
Connor is 3 years old and 86.6 cm
tall (2 feet 10 inches), weighing 11.9 kg.
(26 pounds). He has a broad forehead,
slightly low hairline with a hairy back
and shoulders. Prior to birth, Connor
failed to grow in the last 6 months and
when born spent time in a special care
unit. In the first 9 months he failed to
gain weight and was very hard to feed--
milk was syringed to him.
Connor has lovely long eyelashes and
deep set eyes, a cute button nose and
cheeky smile. He has hypermobile
joints in particular his hands and wrists.
He has a dimple at the base of his spine.
Connor has delayed motor and language
ability. He understands a lot but is unable
to speak, and gets frustrated. The family
can understand his needs, but to most
others they think he is younger than his
age.
Odd and hyperkinetic behaviour is a
real adventure for the rest of the family.
He seems to have endless energy.
We as a family are learning makaton
sign language to help, and pictures to aid
recongnition. A pictorial time line shows
Conner his routine for each day so he can
associate what is happening. We are
waiting for speech therapy for him which
is hoped will help.
In addition to FHS Connor suffers with
sensory integration, he has poor sense of
body position, touch, and movement. We
have to feed him food that is very
textured, and let him play with soft, hard,
just to awaken his senses.
We are getting help, however at the
same time want to be involved with
everyone and everything.
Robin, Germany
Robin was born on October 26, 2001
and now he's 1,58 Meter high (small) (5
foot 2 inches) and weighs 16,8
kilograms (37 pounds).
In the Summer he goes to a special
primary school because he has language
problems (he speaks few words). He's
Delayed mentally and physically.
Robin is a very lively child and has a
very good memory. He loves to play
video games. We parents must make
sure that he doesn't do this too much.
We would like his language to
improve and have tried a speech
therapist. We as parents are using
with parturiton (sign?) language and
many pictures to communicate.
We look forward to more contact
through this support group.
Yours sincerely, Family Grochola
Aisling in Ireland
Many thanks for the information you
sent me regarding FHS. It was most
useful. I will certainly be getting some
copies to give to Aisling's teachers.
We attended Prof. Andrew Greene,
head of Genetics for the whole
country, and he said there were only
about 3 cases in Ireland he was aware
of. He diagnosed Aisling with FHS, but
gave no follow up. And because so little
is known about it, I find it very hard to
find information, so finding you was a
Godsend!
Aisling has no medical problems.
She has tested negative for coeliac
twice, although she does exhibit similar
symptoms. Her heart is fine, no
murmurs or underlying conditions. We
do notice that if she gets cold, her lips
and fingernails go blue. That initially
got me worried about her heart, but we
have since realised that it is because
she has practically no body fat! We are
taking a family holiday to Florida in May
and have requested pool heat in the
villa, because of Aisling!
She is an extremely active,
affectionate, intelligent little girl. She
warms to everyone she meets, and
shows no fear around strangers, which
can be worrying. She is now 6yrs 7
months, 110cms (3 feet, 7 inches) and
weighs 35 lbs.(15.8 kilograms).
Regards and happy Summer to you all.
Gillian Kelly, Ireland
More Pictures ! ........
Jasmine, Italy
I have seen that in this journal
there are many tips. Anyway, I have
noted that there has not been reported
any information about teeth care.
I would like to inform you about
teeth care in these children affected
with Floating Harbor Syndrome.
They need to bruth their teeth at
least 5 minutes every meal with a tooth
brush as soon as they are old enough.
A doctor has told me to use flour in
dependence of the age.
My daughter has so many holes in
the teeth albeit she follows an healthy
diet (without sweets, cakes and junky
food in general).
I’d like to receive a copy of this
journal by postal address.
Schmidt Katia, Italy
Isabel (center), UK
Isabel, now 9 years old, is a delightfully
happy girl and a real joy to everyone that
knows her. The FHS diagnosis was only
confirmed a year ago and came as a relief
to us rather than a shock. Until this time
every medical professional she saw was
mystified about her little use of speech
and small stature. She had undergone many
tests and all had found no explanation.
As parents, we were getting very
frustrated in regard to her education.
Isabel's comprehension was considered by
others as very low because she did not
communicate very much. Now with an FHS
diagnosis everyone at her school can
appreciate that she can understand well
beyond what she can put into words. She
is capable of far more than they had
previously thought.
Within the last year, her speech has
improved appreciably and she is
growing at a steady rate, keeping up the
height of the tallest FHS children of a
similar age. We go from week to week
seeing her make small but appreciable
advances and enjoy very minute with her.
Update on Rhett Berniers, USA
Hello, This is Rhett Berniers mom,
Michele. I hope everyone is doing
GREAT! Rhett is loving the BEACH here
in Maine. Only 4 1/2 more days of
school. Then of course, off to summer
school. He is doing great, except for
his behavior is getting worse. Not sure
if it is the other kids in Public schools
rubbing off onto him with there
behavioral issues or if this is just part
of the course.
I am writing for a couple of reasons:
#1. I would certainly love to here
from other families that just want to
share some info or have questions, ect.
They can contact me at:
mshellymom@hotmail.com.
#2. Is there any way of knowing
how growth hormone shots have worked
on other FHS children. The doctors
here in Maine asked me to try to see if
any kids are really benefiting from the
shots? and the side affect if any?
Please have parents email me if possible
we are wondering if we should stop
them. And how about any special
vitamins that would benefit Rhett? as
he doesn't eat all that well....I do give
him a multivitamin but anything to
benefit him would be great..
hugs and kisses to all
thanks so much.. Michele Bernier
Birth Defects Center
Study Update
For those of you who have signed
up to participate in the study with
the above two hospital genetic
departments, thank you!
We received e-mails from both
of the doctors in charge and they
are in the process of finalizing the
questionnaire. This will be e-mailed
to you (or sent via regular post if we
do not have your e-mail address) as
soon as they have contacted me
regarding this.
Thanks for your patience-- I am
eagerly awaiting this too.
If you have any other questions
or would like to sign up if you
haven't yet please let Deana know as
soon as possible. Contact
information is below.
Floating Harbor Syndrome Support Group
mmmmmmmmmmmmmmmmmmmm
Special Thanks to the
Connor Robinson Family in
the UK for sponsoring this
issue....
THANK YOU !
mmmmmmmmmmmmmmmmmmmm
Trial-a-Bike
This is a “trail-a-bike” made by the Adams
bicycle company. It attaches to a regular bicycle
as a sort of “third wheel”. After using this for
over a year, our son was finally able to learn to
balance enough to ride a regular 2-wheel bike on his
own with no training wheels when he was around 12.
New Members
I was making some copies of old
newsletters for a family and noted that
the first newsletter went out to just
10 families.
We are now up to 60 member in 17
different countries! We've done some
growing in the last 9 years haven't we?
Current Number and Location of
Member Families:
America – 24
England/United Kingdom – 16
Canada – 3
Ireland – 2
The Netherlands – 2 Puerto Rico – 1
Greece – 1 Germany – 1
Mexico – 1 Israel – 1
Australia – 2 Italy – 1
France – 1 South Africa – 1
New Zealand – 1 Brazil – 1
Scotland – 1
Total: 60 Families :-)
That being said, may it be noted that
postage here has gone WAY up, and
that it will cost almost $2 each to mail
the international newsletters out,
around $100 just for postage, not to
mention all my printer cartridges and
paper. If I haven't heard from you in
awhile please contact me and let me
know that you are still interested in
receiving these newsletters. OR that
you would like to receive them via e-
mail, or sponsor an issue.
Also, a donation is always appreciated
and can now be done online through
www.paypal.com Our e-mail address for
paypal is : littleflock@yadtel.net
.
Please e-mail any pictures or updates for
the Nov. issue to the above e-mail
address as well. Have a great summer!
Floating Harbor Syndrome Support Group
July 2008 Issue # 18
Connor, UK age 3
Connor is 3 years old and 86.6 cm
tall (2 feet 10 inches), weighing 11.9 kg.
(26 pounds). He has a broad forehead,
slightly low hairline with a hairy back
and shoulders. Prior to birth, Connor
failed to grow in the last 6 months and
when born spent time in a special care
unit. In the first 9 months he failed to
gain weight and was very hard to feed--
milk was syringed to him.
Connor has lovely long eyelashes and
deep set eyes, a cute button nose and
cheeky smile. He has hypermobile
joints in particular his hands and wrists.
He has a dimple at the base of his spine.
Connor has delayed motor and language
ability. He understands a lot but is unable
to speak, and gets frustrated. The family
can understand his needs, but to most
others they think he is younger than his
age.
Odd and hyperkinetic behaviour is a
real adventure for the rest of the family.
He seems to have endless energy.
We as a family are learning makaton
sign language to help, and pictures to aid
recongnition. A pictorial time line shows
Conner his routine for each day so he can
associate what is happening. We are
waiting for speech therapy for him which
is hoped will help.
In addition to FHS Connor suffers with
sensory integration, he has poor sense of
body position, touch, and movement. We
have to feed him food that is very
textured, and let him play with soft, hard,
just to awaken his senses.
We are getting help, however at the
same time want to be involved with
everyone and everything.
Robin, Germany
Robin was born on October 26, 2001
and now he's 1,58 Meter high (small) (5
foot 2 inches) and weighs 16,8
kilograms (37 pounds).
In the Summer he goes to a special
primary school because he has language
problems (he speaks few words). He's
Delayed mentally and physically.
Robin is a very lively child and has a
very good memory. He loves to play
video games. We parents must make
sure that he doesn't do this too much.
We would like his language to
improve and have tried a speech
therapist. We as parents are using
with parturiton (sign?) language and
many pictures to communicate.
We look forward to more contact
through this support group.
Yours sincerely, Family Grochola
Aisling in Ireland
Many thanks for the information you
sent me regarding FHS. It was most
useful. I will certainly be getting some
copies to give to Aisling's teachers.
We attended Prof. Andrew Greene,
head of Genetics for the whole
country, and he said there were only
about 3 cases in Ireland he was aware
of. He diagnosed Aisling with FHS, but
gave no follow up. And because so little
is known about it, I find it very hard to
find information, so finding you was a
Godsend!
Aisling has no medical problems.
She has tested negative for coeliac
twice, although she does exhibit similar
symptoms. Her heart is fine, no
murmurs or underlying conditions. We
do notice that if she gets cold, her lips
and fingernails go blue. That initially
got me worried about her heart, but we
have since realised that it is because
she has practically no body fat! We are
taking a family holiday to Florida in May
and have requested pool heat in the
villa, because of Aisling!
She is an extremely active,
affectionate, intelligent little girl. She
warms to everyone she meets, and
shows no fear around strangers, which
can be worrying. She is now 6yrs 7
months, 110cms (3 feet, 7 inches) and
weighs 35 lbs.(15.8 kilograms).
Regards and happy Summer to you all.
Gillian Kelly, Ireland
More Pictures ! ........
Jasmine, Italy
I have seen that in this journal
there are many tips. Anyway, I have
noted that there has not been reported
any information about teeth care.
I would like to inform you about
teeth care in these children affected
with Floating Harbor Syndrome.
They need to bruth their teeth at
least 5 minutes every meal with a tooth
brush as soon as they are old enough.
A doctor has told me to use flour in
dependence of the age.
My daughter has so many holes in
the teeth albeit she follows an healthy
diet (without sweets, cakes and junky
food in general).
I’d like to receive a copy of this
journal by postal address.
Schmidt Katia, Italy
Isabel (center), UK
Isabel, now 9 years old, is a delightfully
happy girl and a real joy to everyone that
knows her. The FHS diagnosis was only
confirmed a year ago and came as a relief
to us rather than a shock. Until this time
every medical professional she saw was
mystified about her little use of speech
and small stature. She had undergone many
tests and all had found no explanation.
As parents, we were getting very
frustrated in regard to her education.
Isabel's comprehension was considered by
others as very low because she did not
communicate very much. Now with an FHS
diagnosis everyone at her school can
appreciate that she can understand well
beyond what she can put into words. She
is capable of far more than they had
previously thought.
Within the last year, her speech has
improved appreciably and she is
growing at a steady rate, keeping up the
height of the tallest FHS children of a
similar age. We go from week to week
seeing her make small but appreciable
advances and enjoy very minute with her.
Update on Rhett Berniers, USA
Hello, This is Rhett Berniers mom,
Michele. I hope everyone is doing
GREAT! Rhett is loving the BEACH here
in Maine. Only 4 1/2 more days of
school. Then of course, off to summer
school. He is doing great, except for
his behavior is getting worse. Not sure
if it is the other kids in Public schools
rubbing off onto him with there
behavioral issues or if this is just part
of the course.
I am writing for a couple of reasons:
#1. I would certainly love to here
from other families that just want to
share some info or have questions, ect.
They can contact me at:
mshellymom@hotmail.com.
#2. Is there any way of knowing
how growth hormone shots have worked
on other FHS children. The doctors
here in Maine asked me to try to see if
any kids are really benefiting from the
shots? and the side affect if any?
Please have parents email me if possible
we are wondering if we should stop
them. And how about any special
vitamins that would benefit Rhett? as
he doesn't eat all that well....I do give
him a multivitamin but anything to
benefit him would be great..
hugs and kisses to all
thanks so much.. Michele Bernier
Birth Defects Center
Study Update
For those of you who have signed
up to participate in the study with
the above two hospital genetic
departments, thank you!
We received e-mails from both
of the doctors in charge and they
are in the process of finalizing the
questionnaire. This will be e-mailed
to you (or sent via regular post if we
do not have your e-mail address) as
soon as they have contacted me
regarding this.
Thanks for your patience-- I am
eagerly awaiting this too.
If you have any other questions
or would like to sign up if you
haven't yet please let Deana know as
soon as possible. Contact
information is below.
Floating Harbor Syndrome Support Group
mmmmmmmmmmmmmmmmmmmm
Special Thanks to the
Connor Robinson Family in
the UK for sponsoring this
issue....
THANK YOU !
mmmmmmmmmmmmmmmmmmmm
Trial-a-Bike
This is a “trail-a-bike” made by the Adams
bicycle company. It attaches to a regular bicycle
as a sort of “third wheel”. After using this for
over a year, our son was finally able to learn to
balance enough to ride a regular 2-wheel bike on his
own with no training wheels when he was around 12.
New Members
I was making some copies of old
newsletters for a family and noted that
the first newsletter went out to just
10 families.
We are now up to 60 member in 17
different countries! We've done some
growing in the last 9 years haven't we?
Current Number and Location of
Member Families:
America – 24
England/United Kingdom – 16
Canada – 3
Ireland – 2
The Netherlands – 2 Puerto Rico – 1
Greece – 1 Germany – 1
Mexico – 1 Israel – 1
Australia – 2 Italy – 1
France – 1 South Africa – 1
New Zealand – 1 Brazil – 1
Scotland – 1
Total: 60 Families :-)
That being said, may it be noted that
postage here has gone WAY up, and
that it will cost almost $2 each to mail
the international newsletters out,
around $100 just for postage, not to
mention all my printer cartridges and
paper. If I haven't heard from you in
awhile please contact me and let me
know that you are still interested in
receiving these newsletters. OR that
you would like to receive them via e-
mail, or sponsor an issue.
Also, a donation is always appreciated
and can now be done online through
www.paypal.com Our e-mail address for
paypal is : littleflock@yadtel.net
.
Please e-mail any pictures or updates for
the Nov. issue to the above e-mail
address as well. Have a great summer!
March 2008 Safe Harbor Newsletter
Update on Chandus
Chandus is 14 years old and is 4 ft. 9” tall
(144 cm) and weighs 70 pounds (31 kg.).
He did 5 years of growth hormone
injections and grew at a steady pace.
However, those were discontinued due to
high blood sugar, diabetes onset. He has
still continued to grow 2-3 inches and 1-2
pounds a year.
He does have special education classes
at his regular junior high school and does
well when he applies himself at school.
He studies close to his 8th grade level.
He is a kind, gentle natured young man
but does have sensitivities to change and
conflict. I do notice a temper on occasion.
He does have going to sleep issues—
always has. He stays up very late and
doesn't like mornings very well. I'm
curious if any other Floating Harbor child
has similar struggles. I would love to
have feedback!
Overall, things are going well. He
enjoys music, video games, hunting and
skateboarding and loves to watch Animal
Planet and the History Channel. We are
pleased to hear about a possible
convention! We would love to meet other
families!
Thanks, Julie Dilk
Dear Everyone;
I just thought that I would introduce
myself and my family. We are Pete
Williams III, Elaine Lyon, Pete Williams
IV & Natalie Williams. We live in Seattle,
Washington, USA. And I wonder how
much you would like to know about us all.
Pete III, 49, and will have his 30th
anniversary as a Seattle Fire Fighter May
of 2008. Elaine, 46, started back working
part-time two weeks before the beginning
of summer break this last summer. I do
not recommend starting back to working
out of the home right before summer
break. My week is Monday and Tuesday
at work until 3, Thursday I am at Natalie's
school, and Friday I am at Pete IV's school.
Pete IV, 12, was diagnosed with FHS July
of 2005. He is now in middle school,
which here starts at 6th grade. He is
loving being at the middle school. And we
are blessed with children that enjoy IV's
personality, both from his previous schools
and the children that he has met this year.
Natalie, 10, is doing okay with a special
needs sibling, but some times it gets to
be a bit much for a youngster. The part
that confounds me the most is that she
wanted to go to the doctor as much as IV
does. Natalie is in 5th grade and has not
gotten 5th grade itis yet. Natalie enjoys
meeting new friends and has some really
good long lasting friendships.
Today is the day of the Apple Cup! And it
is the 100th Anniversary of the Apple
Cup. This is the football game between
the two rival Washington Universities.
University of Washington and Washington
State University. The Dawgs against the
Cougs. The mascots are the U of W
Huskies and the WSU Cougars. IV is a
Coug! When and why he started loving
the Cougars? Good question. He has also
loved the Tampa Bay Buccaneers long
before they won the Super Bowl. And
when baseball is in season, we will be
inundated with the Seattle Mariners stats.
Back to today - so today is football. And
I need to get going so I can get food taken
care of so I can watch the game.
Happy Spring to everyone! Elaine
Rhett, 7 years old, Maine USA
Hello Everyone!
This is Rhett and his dog Luke. He will
be 8 in August. He is now 39 3/4” tall. (100
cm) He is still getting growth hormone shots
nightly. Starting to show anger issues
spoken of in the last newsletter. He is an
electronic whiz. He is now realizing that the
older classmates are picking on him,
because of his size. Rhett is a very bright
and loving young man!
More on Sleep problems,......
Julie brought this up, so I
thought I'd relate our experiences
as well. Jesse (14) has had
problems for awhile with this. FHS
children seem to have all this
energy when they are up and
going, and they seem to be able to
keep going, especially at the end of
the day when they've eaten well.
They seem to not be able to go to
sleep. Jesse will stay up talking, get
out of bed after an hour and come
and ask up what we are doing etc.
He seems to have endless energy at
night. BUT, once he falls asleep he
stays that way. He is usually in a
very heavy sleep all night long. I
can take off his glasses, pull the
covers up etc. without him waking
at all.
Then, especially if he
stayed up extra late he is in a bad
mood all morning and crashes on
the couch before lunch taking a
long 2 hour nap.
So, what can we do about this?
Here are a couple of things that
have worked for us:
1. Have a set routine and time
for going to bed. We are very
spontaneous and bedtimes
vary, but the routine doesn't.
We brush teeth, play a game,
and then read a book. Then
he goes to bed. No other
option.
2. We turn on a box fan for a
low background “hum”.
This seems also to block out
any noises of us talking etc.---
things that would interest him
and keep him awake.
3. We invoke a penalty for
getting out of bed or
continuing to talk after lights
out. This is usually a day
without his favorite obsession,
electronics. (You fill in the
blank for your FHS child. :-)
4. We also show him mercy and
give him attention when he
needs it. There are some
nights when his legs hurt,
there was something that
happened that day that
bothered him etc. Then we
take care of that (in bed with
the lights out), make sure he
knows we care and have done
something to help them,
THEN, it is bedtime.
I also would like to hear more
about this problem. If anyone else
has ideas or solutions please let us
know!
Deana Swanson
Chandus is 14 years old and is 4 ft. 9” tall
(144 cm) and weighs 70 pounds (31 kg.).
He did 5 years of growth hormone
injections and grew at a steady pace.
However, those were discontinued due to
high blood sugar, diabetes onset. He has
still continued to grow 2-3 inches and 1-2
pounds a year.
He does have special education classes
at his regular junior high school and does
well when he applies himself at school.
He studies close to his 8th grade level.
He is a kind, gentle natured young man
but does have sensitivities to change and
conflict. I do notice a temper on occasion.
He does have going to sleep issues—
always has. He stays up very late and
doesn't like mornings very well. I'm
curious if any other Floating Harbor child
has similar struggles. I would love to
have feedback!
Overall, things are going well. He
enjoys music, video games, hunting and
skateboarding and loves to watch Animal
Planet and the History Channel. We are
pleased to hear about a possible
convention! We would love to meet other
families!
Thanks, Julie Dilk
Dear Everyone;
I just thought that I would introduce
myself and my family. We are Pete
Williams III, Elaine Lyon, Pete Williams
IV & Natalie Williams. We live in Seattle,
Washington, USA. And I wonder how
much you would like to know about us all.
Pete III, 49, and will have his 30th
anniversary as a Seattle Fire Fighter May
of 2008. Elaine, 46, started back working
part-time two weeks before the beginning
of summer break this last summer. I do
not recommend starting back to working
out of the home right before summer
break. My week is Monday and Tuesday
at work until 3, Thursday I am at Natalie's
school, and Friday I am at Pete IV's school.
Pete IV, 12, was diagnosed with FHS July
of 2005. He is now in middle school,
which here starts at 6th grade. He is
loving being at the middle school. And we
are blessed with children that enjoy IV's
personality, both from his previous schools
and the children that he has met this year.
Natalie, 10, is doing okay with a special
needs sibling, but some times it gets to
be a bit much for a youngster. The part
that confounds me the most is that she
wanted to go to the doctor as much as IV
does. Natalie is in 5th grade and has not
gotten 5th grade itis yet. Natalie enjoys
meeting new friends and has some really
good long lasting friendships.
Today is the day of the Apple Cup! And it
is the 100th Anniversary of the Apple
Cup. This is the football game between
the two rival Washington Universities.
University of Washington and Washington
State University. The Dawgs against the
Cougs. The mascots are the U of W
Huskies and the WSU Cougars. IV is a
Coug! When and why he started loving
the Cougars? Good question. He has also
loved the Tampa Bay Buccaneers long
before they won the Super Bowl. And
when baseball is in season, we will be
inundated with the Seattle Mariners stats.
Back to today - so today is football. And
I need to get going so I can get food taken
care of so I can watch the game.
Happy Spring to everyone! Elaine
Rhett, 7 years old, Maine USA
Hello Everyone!
This is Rhett and his dog Luke. He will
be 8 in August. He is now 39 3/4” tall. (100
cm) He is still getting growth hormone shots
nightly. Starting to show anger issues
spoken of in the last newsletter. He is an
electronic whiz. He is now realizing that the
older classmates are picking on him,
because of his size. Rhett is a very bright
and loving young man!
More on Sleep problems,......
Julie brought this up, so I
thought I'd relate our experiences
as well. Jesse (14) has had
problems for awhile with this. FHS
children seem to have all this
energy when they are up and
going, and they seem to be able to
keep going, especially at the end of
the day when they've eaten well.
They seem to not be able to go to
sleep. Jesse will stay up talking, get
out of bed after an hour and come
and ask up what we are doing etc.
He seems to have endless energy at
night. BUT, once he falls asleep he
stays that way. He is usually in a
very heavy sleep all night long. I
can take off his glasses, pull the
covers up etc. without him waking
at all.
Then, especially if he
stayed up extra late he is in a bad
mood all morning and crashes on
the couch before lunch taking a
long 2 hour nap.
So, what can we do about this?
Here are a couple of things that
have worked for us:
1. Have a set routine and time
for going to bed. We are very
spontaneous and bedtimes
vary, but the routine doesn't.
We brush teeth, play a game,
and then read a book. Then
he goes to bed. No other
option.
2. We turn on a box fan for a
low background “hum”.
This seems also to block out
any noises of us talking etc.---
things that would interest him
and keep him awake.
3. We invoke a penalty for
getting out of bed or
continuing to talk after lights
out. This is usually a day
without his favorite obsession,
electronics. (You fill in the
blank for your FHS child. :-)
4. We also show him mercy and
give him attention when he
needs it. There are some
nights when his legs hurt,
there was something that
happened that day that
bothered him etc. Then we
take care of that (in bed with
the lights out), make sure he
knows we care and have done
something to help them,
THEN, it is bedtime.
I also would like to hear more
about this problem. If anyone else
has ideas or solutions please let us
know!
Deana Swanson
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