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   :)

Hi Pam

i added some pictures on Lauren which where taken on her 1st
birthday. looking back in her red book, she weighed about 32lb at
that time. and was 83cms tall. she has grown 20cm in the last year
which is scary. She was 2 on the 1st sept so is only just 2.
In some way its reassuring to hear that someone may agree with me.
all i get told by 'professionals' is she is large for her age and
was large at birth (was 9lb, not excessivly large really). not sure
on her length at that time, but when they checked her length at
6months she was 72.5cm.

I'm not sure how much longer i can lift her for, as am currently
21weeks pregnant with our 3rd child. We have been through so much
over the last few years, as my husband isnt very well (heart
problems) and both kids have ezcema which is hard to manage at
times, add to that Laurens clumsiness, vomiting, heart murmur which
had to be checked, etc and its been a madhouse.

My daughters walking gait isnt right. As i have a neice and nephew
with cerebal palsy and my other daughter is considered 'normal' i
knew something wasnt right with laurens walking after she had been
wlaking for 6months. She still falls as  much as when she started
walking, still bumps into things, still looks like she is always
trying to steady herself iykwim.

She has had reflux since birth. i remember her spectaculaty throwing
up feeds across the room at 3days old, soaked my other daughter who
was sitting the other side of me. oops. My sister suggested sotos to
me as a possible answer to why my daughter is so large, and had a
look, but she doesnt quite seem to fit with the physical apparence
of sotos.

I am worried i am gonna come across as a paranoid mother if i demand
genetic tesing etc. mind you our new docs have agreed to screen the
kdis for my husbands heart problem so maybe they are more
understanding than my old ones.

sarah

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Pam"
<pamlepro@c...> wrote:
> Hi Sarah,
> Your daughter sounds like she may have a possible overgrowth
syndrome.
> (I am just a parent here mind you!)  I would ask the pediatrician
for a
> referral to a geneticist to seek some answers.  Do you have a
picture of
> her you could post to the group?  My son was diagnosed at age 3 as
> having Sotos Syndrome.  To be more specific he is classified as
> Sotos-like.  His picture is in the picture section under Sotos-
like and
> his name is Kevin   He did have speech delays.  His gross motor
delays
> did not appear until he was about 2.  Even though he walked at 13
months
> (within the normal time frame for children) his gait was not age
> appropriate…Frankenstien-like for longer than what is typical.  He
sat
> at 5 months, but never crawled…he went right to cruising furniture
then
> walking.  He also has fine motor control issues…those are not
always
> picked up until a child is a bit older…like when getting ready for
> nursery school age 3 or so.
>
> I honestly don't recall what is typical for speech output for a 2
year
> old.  Some are talking and others are not.  Some are using
sentences at
> age 18 months.  It is wonderful that she is stringing sentences
> together!   All kids develop differently too so what is normal for
one
> is not normal another.  My son did not really start speaking
regularly
> until he was 4…now he uses 5+ word sentences and many can
understand
> him.
>
> Was she big at birth?  My son was 23 inches long and weighed 8 lbs
11
> oz.  He has always been above 95% for height and head
circumference.
> His weight shot right with the rest of him to above 95% by a few
months
> old.  His head is 1 inch smaller than mine and he is 5 years
old.
>
> According to the growth chart I have here (I am in the USA):  If I
> recall a stone is 14 lbs correct…so that makes your daughter 39
lbs?
>
> 95% for a 24 month old is about 31 lbs and 92-93 cm.  30 months is
about
> 34 lbs and 96-97 cm.  36 months 36-37 lbs and 102-103 cm.  So
depending
> on what your daughter's age is she is off the charts.  You said
she was
> 2 but I was not sure if closer to 2, 2 ½ or 3.  I think that
warrants
> investigating especially where she is vomiting…some children with
Sotos
> (not sure of other overgrowth syndromes) have reflux issues.
Check out
> the Sotos Syndrome site maybe something there will sound familiar
to
> you.  When I read the site it sounded similar to my son in many
ways.
> The website is
>
> http://www.well.com/~sssa/
>
> Good luck and don't give up if you think something is going on…you
know
> your child better than anyone else keep searching till you are
> satisfied.  Some docs can't be bothered to listen which is so
> unfortunate!
> Pam
> (Mom to Kevin age 5 Sotos-like)
>
>
>
>
> -----Original Message-----
> From: Sarah [mailto:djmisdee@h...]
> Sent: Saturday, October 23, 2004 4:11 PM
> To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
> Subject: [UndiagnosedOvergrowthSyndromes] dont know if this is the
group
> for me really.
>
>
> hello
>
> I have a daughter who is 2 years old. she is currently standing
tall
> at just over 100cms tall and weighs around 2 stone 11lb. she has
> only just turned 2. she has a large head, wears hats for
teenagers,
> has size 8.5G feet (very wide, hard to find nice shoes), eyes
> slightly wide set, slight squint only noticable when tired.
vomiting
> issues, clumsiness, clumsey gait.
>
> She isnt behind in any way devolpmentally. she walked at 10months
> old, was sitting up at 5 months, crawling by 6/7 months. has about
> 20 words atm and is starting to put sentances together.
>
> I have been concerned about her since about 6months old when she
was
> the average size of a 1year old. her 1st walking shoes were a size
> 5G. Everyone thinks she is older than she is (most put her at
about
> 4/5years old). she has just started nursery one day a week and is
> the youngest one there, but stands head and shoulders above the
> other kids.
>
> We have been to the paediatrician about her walking, and they
> dismissed her as being clumsey due to her height. we have to go
back
> next year if things dont improve. she constantly wlaks into
things,
> has bruises, but her eyesight is perfectly fine (aside from the
> squint).
>
> She vomits regularly, but still gains weight. as she isnt 'failing
> to thrive' we cant get anyone to take our worries seriously. She
is
> off the centile charts for everything, and all i get told by the
> health visitors is to watch what she eats. but she rarely eats,
> thats the main problem.
>
> I dont know if anyone can help me find some answers, or if my
> daughter is naturally large for her age.
>
> sarah
>
>
>
>
>
>
>
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they were taken at her 1st birthday party. The little girl she is
with is actually 1yr older than her. even then lauren was taller
than her. the other girl is her cousin is on the 50th percentile
line. At this point lauren was already off the charts, and that is
still where she is.

I am only 5ft 2", and my husband is 6ft tall. my other daughter is
considered to be small for her age, but is only just under average.
i am going to annoy our new docs and health visitors (we have just
moved home) and see what they say.

if the recommend putting her on diet like our last HV then i'll be
walking out. how can you put a child who doesnt eat on diet?
yesterday she ate, one bite of toast, 2 smarties, 1 chicken nugget,
couple of chips. she refused lunch (again), and didnt have much
milk/juice either.

and still she grows.

sarah

your situation sounds alot like mine I had to beg the peds to get my
son tested genetically because I was getting tired of being accused
of not doing my job and controll what my son eats and he eats less
than my infant son does sometimes and still gains weight fast and
they say watch what he drinks well he only drinks water I have to
force milk and some juice


--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Sarah"
<djmisdee@h...> wrote:
>
> hello
>
> I have a daughter who is 2 years old. she is currently standing
tall
> at just over 100cms tall and weighs around 2 stone 11lb. she has
> only just turned 2. she has a large head, wears hats for teenagers,
> has size 8.5G feet (very wide, hard to find nice shoes), eyes
> slightly wide set, slight squint only noticable when tired.
vomiting
> issues, clumsiness, clumsey gait.
>
> She isnt behind in any way devolpmentally. she walked at 10months
> old, was sitting up at 5 months, crawling by 6/7 months. has about
> 20 words atm and is starting to put sentances together.
>
> I have been concerned about her since about 6months old when she
was
> the average size of a 1year old. her 1st walking shoes were a size
> 5G. Everyone thinks she is older than she is (most put her at about
> 4/5years old). she has just started nursery one day a week and is
> the youngest one there, but stands head and shoulders above the
> other kids.
>
> We have been to the paediatrician about her walking, and they
> dismissed her as being clumsey due to her height. we have to go
back
> next year if things dont improve. she constantly wlaks into things,
> has bruises, but her eyesight is perfectly fine (aside from the
> squint).
>
> She vomits regularly, but still gains weight. as she isnt 'failing
> to thrive' we cant get anyone to take our worries seriously. She is
> off the centile charts for everything, and all i get told by the
> health visitors is to watch what she eats. but she rarely eats,
> thats the main problem.
>
> I dont know if anyone can help me find some answers, or if my
> daughter is naturally large for her age.
>
> sarah

It has been a while since I last posted but it has been a good day.
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Sarah
Hi and welcome to the group - it is , as you will have realised,
fairly inactive alot of the time.
I think you need to ask your ped to do a height estimate based on
parental heights for your child.  That will indicate whether she is
way outside of the percntile she shoudl be in for your heights.  also
her head, they definitely should be looking at that too.
The only other thing I would say, is that if you are concerned you
shoudl write down all your concerns and send a letter to the ped
stating that you want things looked into as you are not satisfied and
feel that there are issues that need to be looked at in more detail.
If it is in writing then hopefully that would make them do something
if only that they now have it in writing.
Hope this helps
Miranda

hello

I have a daughter who is 2 years old. she is currently standing tall
at just over 100cms tall and weighs around 2 stone 11lb. she has
only just turned 2. she has a large head, wears hats for teenagers,
has size 8.5G feet (very wide, hard to find nice shoes), eyes
slightly wide set, slight squint only noticable when tired. vomiting
issues, clumsiness, clumsey gait.

She isnt behind in any way devolpmentally. she walked at 10months
old, was sitting up at 5 months, crawling by 6/7 months. has about
20 words atm and is starting to put sentances together.

I have been concerned about her since about 6months old when she was
the average size of a 1year old. her 1st walking shoes were a size
5G. Everyone thinks she is older than she is (most put her at about
4/5years old). she has just started nursery one day a week and is
the youngest one there, but stands head and shoulders above the
other kids.

We have been to the paediatrician about her walking, and they
dismissed her as being clumsey due to her height. we have to go back
next year if things dont improve. she constantly wlaks into things,
has bruises, but her eyesight is perfectly fine (aside from the
squint).

She vomits regularly, but still gains weight. as she isnt 'failing
to thrive' we cant get anyone to take our worries seriously. She is
off the centile charts for everything, and all i get told by the
health visitors is to watch what she eats. but she rarely eats,
thats the main problem.

I dont know if anyone can help me find some answers, or if my
daughter is naturally large for her age.

sarah

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

From: UndiagnosedOvergrowthSyndromes@yahoogroups.com

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Thursday, September 16, 2004 6:40 AM

Subject: [UndiagnosedOvergrowthSyndromes] Birthday Reminder

Birthday Reminder from the Calendar of UndiagnosedOvergrowthSyndromes Ireland Campbell's Birthday Thursday September 16, 2004 All Day This event repeats every year. Event Location: Alabama Phone: (334) 382-9635 Yahoo! Greetings Send a Yahoo! Birthday Greeting. Find Birthday Gifts Browse Yahoo! Shopping's Gift Guide

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I just uploaded some pics of my son Michael, feel free to browse

My son has the same problem with pants he is 3 years old and has a 32
inch waist and stand 46 inches tall, I had a few pairs of pants made
by a taylor and I normally just buy him sweatpants (thank go he
prefers them) if I were to buy him jeans I would have to buy sizes
larger than what his father wears, and cut off about half the length
then they look like shorts for a average sized man. Michael cannot
understand why he cannot have ride on toys that most 3 year olds have
because he is very large, btw he was just diagnosed earlier this year
with sotos after having to practally beg the ped. to have him tested
genictally because of his developement delays and his size. He looks
like a 6 year old child with an adult sized head, however so far I
have been able to handle the minor problems associated with the sotos
what I have a problem with is when ever we go to the store weither it
is the grocery store or Walmart I always have to deal with noisy
people when Michael throws a fit or starts yelling or squealing or
crying or runs around like he owns the place. Sometimes it makes me
feel like I am failing him as a mother, due to the rude comment that
I get like people act like Michael is spoiled and I let him control
me, I do what I feel is needed to get through the trip as comly as
possible but I don't let him have control. I know He is special and
needs special care but sometines I just want to throw my own fit just
once. I also worry constantly about him hurting his 4 month old
brother, not intentally because I know he love his brother, but
because he is so young and so large. I also have pic feel free to
look at 'em