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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