----- Original Message -----

From: donnaleapau

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Saturday, May 28, 2005 12:27 AM

Subject: [UndiagnosedOvergrowthSyndromes] Wondering what testing should be done?

My 5 year old son has been diagnosed with autism/asperger's
recently, because of his behaviours and speech. He has fast mood
changes, and lashing out snarling type of thing when he's
stressed/overloaded?
However, my feeling is there is something else to be revealed, I'm
not sure exactly what.
He has been above the 100% band for height since birth, and now at 5
he was 128cms (50.5 inches). He turned 5 less than 3 months ago and
he's grown to 136 cms (53.5 inches) in height in less than 3 months.
He's been growing at these sort of rates all his life.
He is very verbal, but sometimes it is hard to understand his words.
He attends a school for Autism, where he's doing very well, and I
know there's a smart little boy in there (when he can stop long
enough to think). That's the other big thing the hyperactivity. He
tells me it's awful when he's tired and he just can't stop his body.
His head is a little big for his body, he has normal looking ears, a
slight turn inward of his left eye and has glasses for myopia.
The only other person in my family that grew very tall is my cousin,
and she has been in and out of psych clinics, even though she's an
academic in the music field.

Could someone who has experience with going through this help me
with the possible conditions fit these symptoms?

With much thanks,
Donna.

Hi Donna
Autism and Asperger Syndrome can both be features of various Overgrowth
Syndromes.  Your son's height and  head size could also be features of this
too.  Other indicators are poor muscle tone, problems with fine and gross
motor skills, drooling, delayed speech and late milstones.  If he shows any
of these, then I would recommend you seek a second opinion from a
paediatrician.

The most well known Overgrowth Syndrome seems to be Sotos Syndrome and there
is a very active site for this on a yahoo group called sotosyndrome.  This
group covers all Overgrowths and members share loads of advice.

Susan
----- Original Message -----
From: "donnaleapau" <leap@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Friday, May 27, 2005 3:27 PM
Subject: [UndiagnosedOvergrowthSyndromes] Wondering what testing should be
done?


> My 5 year old son has been diagnosed with autism/asperger's
> recently, because of his behaviours and speech. He has fast mood
> changes, and lashing out snarling type of thing when he's
> stressed/overloaded?
> However, my feeling is there is something else to be revealed, I'm
> not sure exactly what.
> He has been above the 100% band for height since birth, and now at 5
> he was 128cms (50.5 inches). He turned 5 less than 3 months ago and
> he's grown to 136 cms (53.5 inches) in height in less than 3 months.
> He's been growing at these sort of rates all his life.
> He is very verbal, but sometimes it is hard to understand his words.
> He attends a school for Autism, where he's doing very well, and I
> know there's a smart little boy in there (when he can stop long
> enough to think). That's the other big thing the hyperactivity. He
> tells me it's awful when he's tired and he just can't stop his body.
> His head is a little big for his body, he has normal looking ears, a
> slight turn inward of his left eye and has glasses for myopia.
> The only other person in my family that grew very tall is my cousin,
> and she has been in and out of psych clinics, even though she's an
> academic in the music field.
>
> Could someone who has experience with going through this help me
> with the possible conditions fit these symptoms?
>
> With much thanks,
> Donna.
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

My 5 year old son has been diagnosed with autism/asperger's
recently, because of his behaviours and speech. He has fast mood
changes, and lashing out snarling type of thing when he's
stressed/overloaded?
However, my feeling is there is something else to be revealed, I'm
not sure exactly what.
He has been above the 100% band for height since birth, and now at 5
he was 128cms (50.5 inches). He turned 5 less than 3 months ago and
he's grown to 136 cms (53.5 inches) in height in less than 3 months.
He's been growing at these sort of rates all his life.
He is very verbal, but sometimes it is hard to understand his words.
He attends a school for Autism, where he's doing very well, and I
know there's a smart little boy in there (when he can stop long
enough to think). That's the other big thing the hyperactivity. He
tells me it's awful when he's tired and he just can't stop his body.
His head is a little big for his body, he has normal looking ears, a
slight turn inward of his left eye and has glasses for myopia.
The only other person in my family that grew very tall is my cousin,
and she has been in and out of psych clinics, even though she's an
academic in the music field.

Could someone who has experience with going through this help me
with the possible conditions fit these symptoms?

With much thanks,
Donna.

Hi!

I just wanted to let other parents, whose babies have Sotos syndrome
like symptoms but no diagnosis, know about this functional
neurological syndrome: the kinematic imbalances due to suboccipital
strain (KISS).

It is not genetic and you might start by having the baby evaluated by
a physical therapist and having X-rays of the neck evaluated. It is
not about overgrowth but other developmental difficulties that seem to
match Sotos syndrome.

Most of the information is available in German.

Taina


The information below is from the article:

Biedermann
Manual Therapy in Children
Journal of Manipulative and Physiological Therapeutics
Volume 28, Number

Submit requests for reprints to: Heiner Biederman, MD, Victor-
Jacobslei 18, B-2600 Antwerpen (e-mail: hbie@...).


Relevant questions that contribute to a KISS score

Delivery

Duration of delivery (b1; 1-3; 3-6; N6 h)
Oblique presentation at birth
Twin
Forceps or vacuum delivery
Cesarean delivery

The first months

Bad sleeper during first months, 6 to 12 months, or later
Did/does the child often wake up at night
Crying at night—how often
Fixed sleeping pattern
Problems with breast-feeding on one side
Signs of colic
Orofacial hypotonus
Hypersensitivity of the neck region

General health

Headaches
Mouth is often open

Sensorimotor development slower than expected

Posture and movement
Language
Concentration
Social integration

Asymmetry

Visible immediately after birth or later
Looks only to one side
Moves only one arm/leg
Face is smaller on one side
Back of the head flat on one side
Has a bald spot on the back of the head

Hello,

I am new to this group and thought I'll share the Health Listing of
hi-fiweb.
To get the complete health listing you may go to
http://www.hi-fiweb.com/health

Good day!
Kathy

Soto Syndrome Literature Review

In the Nature Genetics article titled "Haploinsufficiency of NSD1
causes Sotos syndrome," that was published online 18 March 2002, I
became a little disturbed while reading the abstract. In the last
sentence of the abstract the words "the cause" was used. The reason
why I have an issue with those words is that there is a possibility
that there are more genes that could/might cause Soto syndrome. The
words that I illustrated would be read better by the words "a
cause."

I hypothesize that this neurological disorder that results from an
overgrowth during the prenatal stage of development and leads to
adult growth, leads me to think that there might be numerous genes
that could be causes for this disorder. The researchers in this
article constructed a BAC/PAC cosmid contig that allowed them to
find a breakpoint that had a similar genomic sequence to the mouse
Nsd1. From the evidence that is provided in the article, the Nsd1
sounds suffice to be a big player for the cause of this disorder.
However, there is a lot of research that still needs to be done to
better understand the role that Nsd1 plays in the cause of this
disorder. It is known that the Nsd1 may (which means the function
and role that Nsda1 has is in the early stages of research) interact
as a nuclear receptor co-repressor and co-activator. The reason why
Nsd1 may act as a nuclear receptor co-repressor and co-activator is
because it interacts with the nuclear hormone receptors (these
hormone receptors have major roles during development). The authors
in this paper stated that Nsd1 acts as a co-repressor because of its
role with genes that have roles with promoting growth.

If anyone wants to read some literature on Soto syndrome can go to
the Online Mendelian Inheritance in Man website and type in "Sotos
Syndrome" and click on the 5th link.

Interesting facts about Sotos syndrome:

There have been 38 reported intragenic mutations in patients
diagnosed with Sotos syndrome. There are some apparent differences
between persons with Sotos syndrome in Japan and UK. In the UK, 6
percent of patients have a deletion. In Japan, about 50 percent of
patients diagnosed with Sotos syndrome have the common
microdeletion.

There is still a lot of research that needs to be done.

I will make another posting at a later date. What I will discuss in
the next posting I'm not sure yet. However, if anyone wants me to
discuss any topic related to Sotos syndrome I will be happy to do
so. If anyone has questions feel free to share them.

Jonathon

Soto Syndrome Literature Review

In the Nature Genetics article titled "Haploinsufficiency of NSD1
causes Sotos syndrome," that was published online 18 March 2002, I
became a little disturbed while reading the abstract. In the last
sentence of the abstract the words "the cause" was used. The reason
why I have an issue with those words is that there is a possibility
that there are more genes that could/might cause Soto syndrome. The
words that I illustrated would be read better by the words "a
cause."

I hypothesize that this neurological disorder that results from an
overgrowth during the prenatal stage of development and leads to
adult growth, leads me to think that there might be numerous genes
that could be causes for this disorder. The researchers in this
article constructed a BAC/PAC cosmid contig that allowed them to
find a breakpoint that had a similar genomic sequence to the mouse
Nsd1. From the evidence that is provided in the article, the Nsd1
sounds suffice to be a big player for the cause of this disorder.
However, there is a lot of research that still needs to be done to
better understand the role that Nsd1 plays in the cause of this
disorder. It is known that the Nsd1 may (which means the function
and role that Nsda1 has is in the early stages of research) interact
as a nuclear receptor co-repressor and co-activator. The reason why
Nsd1 may act as a nuclear receptor co-repressor and co-activator is
because it interacts with the nuclear hormone receptors (these
hormone receptors have major roles during development). The authors
in this paper stated that Nsd1 acts as a co-repressor because of its
role with genes that have roles with promoting growth.

If anyone wants to read some literature on Soto syndrome can go to
the Online Mendelian Inheritance in Man website and type in "Sotos
Syndrome" and click on the 5th link.

Interesting facts about Sotos syndrome:

There have been 38 reported intragenic mutations in patients
diagnosed with Sotos syndrome. There are some apparent differences
between persons with Sotos syndrome in Japan and UK. In the UK, 6
percent of patients have a deletion. In Japan, about 50 percent of
patients diagnosed with Sotos syndrome have the common
microdeletion.

There is still a lot of research that needs to be done.

I will make another posting at a later date. What I will discuss in
the next posting I'm not sure yet. However, if anyone wants me to
discuss any topic related to Sotos syndrome I will be happy to do
so. If anyone has questions feel free to share them.

Jonathon

Message: 1
Date: Fri, 22 Apr 2005 03:19:42 -0000
From: "jeweber56"
Subject: A New Enthusiastic Member


Hi, Everyone,

My first name is Jonathon. I'm currently an undergraduate student in
Genetics and Molecular Biology. I'm joining this group because I want
to help out with understanding the mysteries that underlie the
Overgrowth Syndrome. I have a burning desire to cure genetic disorders.
I will read the journal article in Nature Genetics that shows evidence
of a gene (NSD-Nuclear SET Domain 1) that has been shown to be
associated with Sotos Syndrome. I will make comments about this article
in a later posting.

Hi, Everyone,

My first name is Jonathon. I'm currently an undergraduate student in
Genetics and Molecular Biology.  I'm joining this group because I want
to help out with understanding the mysteries that underlie the
Overgrowth Syndrome. I have a burning desire to cure genetic disorders.
I will read the journal article in Nature Genetics that shows evidence
of a gene (NSD-Nuclear SET Domain 1) that has been shown to be
associated with Sotos Syndrome. I will make comments about this article
in a later posting.

Hi Liz

I would definitely recommend you try the other site as there are a couple of
mums on there who are very knowledgable about Sotos.  However I think the
spelling has 2 "s" in the middle - sotossyndrome@yahoogroups.com

Would you mind me asking you a personal question as I only know of children
with overgrowth, not adults?  How tall are you and when did you stop
growing?

Best wishes, Susan


----- Original Message -----
From: "liztombs" <liztombs@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Monday, January 03, 2005 5:32 PM
Subject: [UndiagnosedOvergrowthSyndromes] i have sotos syndrome


>
>
> hi my name is liz tombs, and i have sotos syndrome, and ive had it for the
> past 27 yrs,
> and it can some times be a pain in the but,
> if there are any other people on this page who have this syndrome,
> one thing is that slightly anoys me is that this syndrome isnt classed as
> a recognised
> syndrome or disability,
> and i was wondering if it is classed as a disability,
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

hi my name is liz tombs, and i have sotos syndrome, and ive had it for the past
27 yrs,
and it can some times be a pain in the but,
if there are any other people on this page who have this syndrome,
one thing is that slightly anoys me is that this syndrome isnt classed as a
recognised
syndrome or disability,
and i was wondering if it is classed as a disability,

Hello, and thank you for the warm welcome. So nice to be able to
talk to other parents with sgbs.

Take care,
  Laurie   :)

Hi, I added 2 new pics of the kids!

Laurie   :)

Sher
have just checked again - there is a support group based in the UK I
think which has a contact email address that was updated only about
two weeks ago.
If you go to google and search worldwide, putting in gorlin syndrome
it was the first listing that came up.
They say they are in contact with 300 families worldwide and it is
maintained by a professor at one of the hospitals here I think
Hope this helps
miranda

Sher hi and welcome to the group:)
Not sure there is anyone on the site with Gorlin syndrome but when I
was researching the various syndromes, I am sure I came across
something about it on the net.  I'm sure you have checked it out, but
could your docs not refer you to the docs who may have dxd other
cases (I know it is rare) and maybe put you in touch with others in
the same sit?
Just a thought although you may have already tried.
But welcome anyway.  The group is not always that verbal but we do
try and help each other.
Miranda
-- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Sweetie"
<sherylac23@h...> wrote:
>
> Hi, I'm Sher, my 3 kids and myself all have Gorlin Syndrome, and
> would like to talk to others who have it..never have before..and
> would like to get some support with it..Thanks:-)

Hi sarah
yes the child was Archie - someone just told me today and that it is
MOMO.
Welcome to the group too:)
Miranda--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Sarah"
<djmisdee@h...> wrote:
>
> The boy in the uk, that was on tv the other week was Archie wasnt
> it? (The 6 stone baby on channel 5??). Archie has MOMO syndrome.
His
> mum is on a parenting board i use, i might contatc her and redirect
> her here.
> sarah
>
>
>
> --- In
> UndiagnosedOvergrowthSyndromes@yahoogroups.com, "finnedward1998"
> <miranda.bury@v...> wrote:
> >
> > Laurie HI and welcome to the group.
> > Thanks for sharing your story - I'm in the UK and I remember
> seeing
> > pics I am sure of your Zak, now I have seen the baby pic again,
> but
> > that was before we had a child with o'growth and only now that
you
> > have posted have I remembered them.
> > Apparently there was a program on tv here last week about a baby
> with
> > o'growth , but I missed it but from the messages I have got it
> sounds
> > as though the child has SGBS as well but dont know.
> > Hope you have found some support from meeting other in a similar
> > situation though through your efforts to get to the bottom of the
> > issues.
> > Our little boy is 6 and is undiagnosed at the moment, with
> overgrowth
> > syndrome, sotos-like.  Dont know if they will ever get to the
> issue
> > with him, but keep hoping they will find a child who look similar
> and
> > has similar medical issues, but until then we wait it out taking
> one
> > day at a time.  WE have been told it is definitely not SGBS or
> > Beckwith's so we wait and see.
> > Kind regards
> > Miranda

Hi, I'm Sher, my 3 kids and myself all have Gorlin Syndrome, and
would like to talk to others who have it..never have before..and
would like to get some support with it..Thanks:-)

The boy in the uk, that was on tv the other week was Archie wasnt
it? (The 6 stone baby on channel 5??). Archie has MOMO syndrome. His
mum is on a parenting board i use, i might contatc her and redirect
her here.
sarah



--- In
UndiagnosedOvergrowthSyndromes@yahoogroups.com, "finnedward1998"
<miranda.bury@v...> wrote:
>
> Laurie HI and welcome to the group.
> Thanks for sharing your story - I'm in the UK and I remember
seeing
> pics I am sure of your Zak, now I have seen the baby pic again,
but
> that was before we had a child with o'growth and only now that you
> have posted have I remembered them.
> Apparently there was a program on tv here last week about a baby
with
> o'growth , but I missed it but from the messages I have got it
sounds
> as though the child has SGBS as well but dont know.
> Hope you have found some support from meeting other in a similar
> situation though through your efforts to get to the bottom of the
> issues.
> Our little boy is 6 and is undiagnosed at the moment, with
overgrowth
> syndrome, sotos-like.  Dont know if they will ever get to the
issue
> with him, but keep hoping they will find a child who look similar
and
> has similar medical issues, but until then we wait it out taking
one
> day at a time.  WE have been told it is definitely not SGBS or
> Beckwith's so we wait and see.
> Kind regards
> Miranda

I have noticed that most of the sotos kids are tall and very skinny
but am scratching my head because my son was labled sotos and is very
tall but also very large he is 3 and 3/4 years old stands 48 inches
tall and weighs 97 lbs but am now concerned for my baby who is 6
months and at last checkup was 26 inches long and 19 and 3/4 lbs
which I believe is high on the large side too does any one know if
this is heriaditary (I can't spell) sure hope it looks right or what
the chances of both my children having the same situations. And the
chances if I have any more children them have the overgrowth too. I
also have a nephew who is 12 and is 5 foot 9 and weighs 235 lbs. I
need help if someone out there know of who I can contact or go to to
find the answers please let me know or if there by chance is someone
out there that can shed some light on the subject please by all means
do again thank you.

your son Zak sounds a lot like my Michael and looks a lot like him
you can see his pics in th photos area well anyway I'm not one for a
lot of words but good to have you on board I too have been accused of
overfeeding my son who often times eats less than his father who only
weighs 125 lbs and is nothing but skin and bones I know compairing a
child to a full grown man is sensless but my husband probably eats
less than an infant my youngest son is also high on the precentile at
95 to 97 % in both height and weight
--- In
UndiagnosedOvergrowthSyndromes@yahoogroups.com, "finnedward1998"
<miranda.bury@v...> wrote:
>
> Laurie HI and welcome to the group.
> Thanks for sharing your story - I'm in the UK and I remember seeing
> pics I am sure of your Zak, now I have seen the baby pic again, but
> that was before we had a child with o'growth and only now that you
> have posted have I remembered them.
> Apparently there was a program on tv here last week about a baby
with
> o'growth , but I missed it but from the messages I have got it
sounds
> as though the child has SGBS as well but dont know.
> Hope you have found some support from meeting other in a similar
> situation though through your efforts to get to the bottom of the
> issues.
> Our little boy is 6 and is undiagnosed at the moment, with
overgrowth
> syndrome, sotos-like.  Dont know if they will ever get to the issue
> with him, but keep hoping they will find a child who look similar
and
> has similar medical issues, but until then we wait it out taking
one
> day at a time.  WE have been told it is definitely not SGBS or
> Beckwith's so we wait and see.
> Kind regards
> Miranda

Laurie HI and welcome to the group.
Thanks for sharing your story - I'm in the UK and I remember seeing
pics I am sure of your Zak, now I have seen the baby pic again, but
that was before we had a child with o'growth and only now that you
have posted have I remembered them.
Apparently there was a program on tv here last week about a baby with
o'growth , but I missed it but from the messages I have got it sounds
as though the child has SGBS as well but dont know.
Hope you have found some support from meeting other in a similar
situation though through your efforts to get to the bottom of the
issues.
Our little boy is 6 and is undiagnosed at the moment, with overgrowth
syndrome, sotos-like.  Dont know if they will ever get to the issue
with him, but keep hoping they will find a child who look similar and
has similar medical issues, but until then we wait it out taking one
day at a time.  WE have been told it is definitely not SGBS or
Beckwith's so we wait and see.
Kind regards
Miranda

Hi, Just posted some pics of the kids!

Laurie  :)

Hi, Just had to tell you that our 4 yr old was near me when I pulled
up this group. He saw the handsome young man on the home page and
asked if it was Zach,lol. Thought it was cute to share with you. I
will post some photos when I get a chance.

Laurie   :)

Hi everyone!

  My name is Laurie, my hubby Chris and I have 5 great kids - we are
from NY.
  The kids: Andrew almost 16 has SGBS & Duanes syndrome (visually
impaired), Summer age 12, Zachary age 9 SGBS, Chloe age 5 and Jacob
age 4.
  Zach was the one that really presented with problems eary on. He
was 10.6 lbs and 23 inches when he was born. He was breast fed for
the 1st 6 months and was growing like a weed. He started out in 12
month old clothing when he was born. He used to grow 1 to 2 inches
in height in a 24 to 48 hour period and gain 2 to 2.5 lbs almost
every 2 weeks the whole 1st year of life. My laundry wouldn't fit
him from week to week. His hair grew very fast, his nails I had to
cut sometimes twice a week, If he got a booboo it healed very quick.
Zach didn't walk until he was 18 months old because of his size. At
17 months he was 71 lbs. I carried this child all the way to 100
lbs. and used to dislocate my shoulders taking care of him and just
forget about my back.
  He holds a guiness world record as the worlds largest 17 month old
at 71 lbs too.(The guiness people called me and told me, I didn't
have a clue he had broke the record).
  We were going to the doctor almost every 2 weeks the 1st year of
his life. I knew something was different but didn't know what. The
doctors only could blame me for his size and I got sick of hearing
it. I started doing my own investigation then.
  We lost our insurance which was the worst thing that could happen
and we made $50 to much at that time for medicaid. I really was
losing my mind at this point.
  A friend suggested to contact the news paper and maybe I could
reach someone that had a child like zach or a doctor may be able to
help if they heard our story. I called for a solid month straight to
the newspaper. They thought I was a nut! Finally they sent some out,
I think to just shut me up. The guy arrived and saw Zach and just
said, "oh my god"! The next day we were on the front page. We got an
endocrine doc out of it, I was thrilled! We went for testing
thinking maybe this would find an answer. Every test came back
perfect, nothing wrong. I was back at square one again. In the mean
time I was researching by phone and snail mail, we had no computer
then. I would get info in latin and take it to the doc and
say, "does he have it, Read this to me"! The doc was more interested
in how I got my hands on all this literature, I refused to leave
until the read it all to me. It was an up hill battle all along!
  Then we got a call from the associated press, they wanted to do a
story on us. I didn't realize the magnitude of the AP. We did the
story and photo shoot and heard nothing for a short time. All of a
sudden all hell broke loose!!! We were in almost every newspaper
around the world in 48 hours. My phone went crazy, people and news
crews were at my door. And me with no shower or coffee yet doing
interviews to get help. At this point I was ready to sell my soul to
the devil for help- it sure did feel like I was then!
  I was asking for a pediatric geneticist that specialized in over
growth syndromes during the interviews or any parents of kids with
similar issues. The T.V. shows started calling and we got a show
that had the geneticist we needed. We ended up on the Jerry Springer
show,no I didn't kick hubby's but either - it was before his show
went to what it is today! I had a film crew come into our house to
see him wake up and watch him all day. They were shocked when they
saw that he didn't eat very much at all!
  We went to the geneticist and he adored Zach, It felt so good to
see this doc and feel like he knew what we were going thru. He
picked Zach up at almost 80 lbs and said he was beautiful, I started
to cry! He did all the testing and measuring of everything on this
kid, all our history - everything. During this time we were being
run down in the media, I was a bad mom, I over fed him, he's gonna
die from being so fat! People were horrible to us in public before
we went to the media, they would come to me and say those same
things too!
  Zach didn't eat alot only when he went thru growth spurts. Other
than that he ate like a bird, his nick name is Gooey because he used
to throw and smear his food when he was little. His feet were to big
for shoes, I used to make him shoes from what ever I could find. Now
he gets his feet cast and shoes are made for him with built in
orthotics for flat feet. Clothing was a nightmare! Coats that fit
him around had arms that hung to the ground. Pants and shirts the
same. Lets just say I can sew my but off now, lol. Car seats just
forget, he didn't fit - shopping cart - he didn't fit, carriages -
we used a double stroller with both seats down. He was extremely big
and strong and still is!!! He was the most beautiful little "big"
boy, he looked like a cherub.
  So time went by about 1 1/2 years and the media attention died down
and we hadn't heard anything in awhile. One day I received a letter
confirming that Zach had a rare genetic overgrowth syndrome called
SGBS. At that time there were only 150 to 200 cases that were known
of. We got a computer and I looked it up. Then there were only 3 or
4 web sites about sgbs and it was all medical jargin. I told my
hubby I had to go back to the media to validate us and let the world
know we hadn't done anything wrong to our child it was truley a
medical problem.
  We did tons of shows from germany , japan , italy all over. The
emails, snail mails and phone calls were coming again. People
calling with good wishes, calling saying they took our article or
video to their doc to get their son tested and they had it too.
Their kids were getting mistaken for Zach when they went out. It was
amazing!! Not only did I get help for Zach but many others were able
to get help by seeing our story. I finally felt like We had some
answers and made some head way. I finally felt like we did make the
right decission going public.
  Today Zach is 9 1/2 years old, he weighs 235 lbs(for the last year
he hasn't gained), 5 1/2 feet tall and in the 4th grade. He is a
good student(biggest in his class) and just started riding the
regular bus instead of the handicap bus.
  The geneticist told us he would enter puberty sooner and the weight
would start to match up to his height then. The
doctors "guesstimate" is that he will be over 7 feet tall when he is
done growing.
  Our son Andrew is 6 ft tall and 310 lbs he is also visually
impaired. He was born without the 6th nerve in his eyes, it is
called duanes syndrome. If it weren't for Zach having such a
pronounced growth I think we never would have know that they both
have sgbs.
  As for medically - Zach has enlarged kidneys we watch for wilms
tumors. He has a floating testicle. We also went thru a period of
vomiting for no reason and the docs could have cared less because he
wasn't having failure to thrive. He also used to have bouts with
diarreaha, sometimes very bad for long period. Doc said it was milk
allergy, it wasn't. He is sensitive to sugars and fats. Anything
homemade is fine for him. If he eats certain foods premade from
store like cookies, cake or even a cheese burger from mcdonalds- he
gets diarreaha. So we watch his diet, try to keep it with low carbs
and fat and more protien. Seems to work well and his weight has
stablized now.
  When all was said and done we stepped back into our "normal" life
and continue to break new waters with Zach every day. It has gotten
easier over time, for the most part and kids are good with Zach. His
heart matches his size! He is a great kid wants to be a chef and
comedian when he grows up. He doesn't remember most of it and I'm
glad he doesn't. We have archived it all for him and he knows the
whole story and is very proud of it. He loves to tell people he has
a gene, lol.
  Our biggest challenge right now (and always) is for him to
understand he is stronger than the average kid. He is a 9 yr old
driving a Mac truck, lol. We tell him god gave him muscles to help
people not to hurt.
  I'm sorry for the long post, I didn't intend to write so much was
just gonna say hi,lol. But once I sat down to type, it felt good to
tell our story to people that could understand it.
  If anyone has any questions please feel free to ask!!!

Thanks for letting me tell our story!

Laurie   :)