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dont know if this is the group for me really.   Message List  
Reply | Forward Message #427 of 809 |
RE: [UndiagnosedOvergrowthSyndromes] dont know if this is the group for me really.

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@...]
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







Sun Oct 24, 2004 6:17 pm

kevsmom72699
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Message #427 of 809 |
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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....
Sarah
djmisdee
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Oct 23, 2004
9:11 pm

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...
finnedward1998
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Oct 23, 2004
10:55 pm

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...
Cynthia Hale
ccmhale02
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Oct 24, 2004
2:15 am

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 ...
Pam
kevsmom72699
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Oct 24, 2004
6:18 pm

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...
Sarah
djmisdee
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Oct 24, 2004
8:15 pm
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