my son has gorlin syndrome he is 8yrs old. he is very large for his
age. he also has digeorge syndrome. he has alot of headaches he also
has some tumors on his tongue and some on his face. they are not caner
yet. his dad has it and his brother from his dad has it. his brother
had brain cancer from it and survived. but with my son as far as i
been told is that i just have to wait until a cancer tomor form
somewhere in his body. i still dont know awhole lot about it because
it is so rare. he also has crohns disease in his right foot which was
a club foot. he has a 9 1/2 in mens foot on his left and a 6 1/2 foot
on the right. if anyone know anything about this syndrome please let
me know and what i should expect to happen to my son.

Hi, my name is Brenda and I have also seen the Discovery Health show
on Archie.  He looks so much like my son did at that age it was
scarey.  I might add that I thought that Archie was/is adorable.
Anyway, my son is now 11 and Dr.'s are still trying to figure out why
he's so large.  They once thought he had Prader Willi Syndrome but the
tests came back negative as did the testing for Fragile X.
Dr.'s say he's severly autistic although that was a very hard
diagnosis for them to give him because he is extremely social and
doesn't completely fit the profile.  My son is like I said now 11yrs
old and is becoming violent with many many behavior issues.  He
attacked his teacher at school (scratched her chest and arm)so badly
that she had to go get a tetnus shot from workman's comp.  I don't
know where to turn or talk to.  No one around here seems to have any
clue  Does anyone have any ideas for me?  I appreciate anything you
might have.

Liz hi
they have discovered there is a mutation or deletion in the NSD1 gene
which I think is on 5q35 chromosome. If you are in contact with a
geneticist they may be able to give you more information.  Did you know
that there is a site for Sotos syndrome as well?  There is quite a bit
of information on the Home page of that site which might be of some
help to you.
HTH a little
Miranda--- In
UndiagnosedOvergrowthSyndromes@yahoogroups.com, "liztombs"
<liztombs@...> wrote:
>
> hi im liz and i have sotos sydrome,
> i was wondering if there has been a breakthrough in what causes sotos
syndrome.
> is it the female gene or the male gene thats faulty.
>

Thanks Krystal.  We are waiting on my son's results to come back, but he have
most of the characteristics of Soto's.  He's almost 5 and we still don't have an
official "syndrome" or diagnosis.  I would love to find out what is "wrong" with
him...just so I know.

Thanks,
Michelle
>
> From: <kgermiquet@...>
> Date: 2006/05/19 Fri PM 07:07:22 EDT
> To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
> Subject: Re: [UndiagnosedOvergrowthSyndromes] Digest Number 208
>
> My son isn't diagnosed Sotos - results just came back negative - but we did
have some problems with his behaviour.  He was put on Dexedrine & it really
seems to be helping.
>
> Krystal
>
> ----- Original Message ----
> From: UndiagnosedOvergrowthSyndromes@yahoogroups.com
> To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
> Sent: Friday, May 19, 2006 1:34:06 PM
> Subject: [UndiagnosedOvergrowthSyndromes] Digest Number 208
>
>
>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
>    1.  Soto Syndrome and behavior
>          From: "walterkubas" waltnchelle@...
>    2.  Soto's syndrome and behavior
>          From: "walterkubas" waltnchelle@...
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message 1
>     From: "walterkubas" waltnchelle@...
>     Date: Fri May 19, 2006 4:58am(PDT)
> Subject: Soto Syndrome and behavior
>
> Does any one have a problem with their Soto child's behavior?  If so,
> please tell me what kinds of medicines you have tried that seem to
> settle them down.  I am really having a hard time with my son right
> now.  Please help!!!!
>
>
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message 2
>     From: "walterkubas" waltnchelle@...
>     Date: Fri May 19, 2006 5:07am(PDT)
> Subject: Soto's syndrome and behavior
>
> Hello...is there anyone out there who has problematic behavior with
> their Soto's child?  If so, what medications have you tried that seem
> to work?  I am having a terrible time with my son's behavior.  Please
> help!!!!!
>
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> ------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
> ------------------------------------------------------------------------
>

Hello...is there anyone out there who has problematic behavior with
their Soto's child?  If so, what medications have you tried that seem
to work?  I am having a terrible time with my son's behavior.  Please
help!!!!!

Does any one have a problem with their Soto child's behavior?  If so,
please tell me what kinds of medicines you have tried that seem to
settle them down.  I am really having a hard time with my son right
now.  Please help!!!!

hi im liz and i have sotos sydrome,
i was wondering if there has been a breakthrough in what causes sotos syndrome.
is it the female gene or the male gene thats faulty.

hi to any new members,we would love to hear your stories and offer any
advice,or just listen! sometimes it goes fairly quiet on here so any
new members would be listened to with great interest,we all need to
know if someone with similar experiences is out there!.take care
maxine uk

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "shannick145"
<shannick@...> wrote:
>
> I have had difficulty getting into this site recently and wonder
> whether anyone else has too.
>
> Anyway, I have just browsed through the membership list and
realise
> that there are several new (genuine) members who have joined in
the
> past few months, but have not posted on here, maybe because it is
> fairly quiet.  This site used to be really busy and informative
and
> I would like to see it get like that again.
>
> I am sure I am not the only member who gets so frustrated about my
> daughter not having a proper diagnosis.  My doctor said that there
> are more people who have an undiagnosed overgrowth condition than
> there are with a named syndrome.  It is likely that we will never
> get to the bottom of what our kids have wrong with them, but it is
> my dream that one day on here, two members will realise that their
> children have exactly the same features and a new syndrome will be
> born.
>
> If anyone is interested, I would be happy to give a lengthy
account
> of all my daughter's symptoms, features and history, and would be
> very interested in any information which anyone else would like to
> pass on about their child.
>
> Please let me know if you are interested.
>
> Susan UK
>hi susan,everything on here seems fine,hows shannon doing ,i hope
well,im seeing the genetist 2 morrow,ill let you know how it
goes,maxine

Send instant messages to your online friends http://uk.messenger.yahoo.com

I have had difficulty getting into this site recently and wonder
whether anyone else has too.

Anyway, I have just browsed through the membership list and realise
that there are several new (genuine) members who have joined in the
past few months, but have not posted on here, maybe because it is
fairly quiet.  This site used to be really busy and informative and
I would like to see it get like that again.

I am sure I am not the only member who gets so frustrated about my
daughter not having a proper diagnosis.  My doctor said that there
are more people who have an undiagnosed overgrowth condition than
there are with a named syndrome.  It is likely that we will never
get to the bottom of what our kids have wrong with them, but it is
my dream that one day on here, two members will realise that their
children have exactly the same features and a new syndrome will be
born.

If anyone is interested, I would be happy to give a lengthy account
of all my daughter's symptoms, features and history, and would be
very interested in any information which anyone else would like to
pass on about their child.

Please let me know if you are interested.

Susan UK

Hi Maxine

My computer has been down so I am just catching up with all the posts.  Sorry to hear about your Grandmother, but so pleased you got to know her again before she died.

 

I read about Michael's possible haemanginoma.  Did you know that this is a characteristic of another overgrowth condition called Bannayan-Riley-Ribucalva (think the spelling is right) or BRR for short.  Hope you don't mind me mentioning it.

 

I am going to post once a week on this site to keep it open for any possible newcomers. 

 

Susan UK

 

 

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

From: maxine powis

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Friday, April 07, 2006 1:06 PM

Subject: Re: [UndiagnosedOvergrowthSyndromes] Re: To miranda

miranda,i agree we should all post maybe once a week,one to support each other,and two to keep it going,can i ask whats your sons story if you dont mind me asking? thanks maxine

finnedward98 <finnedward98@...> wrote:

I think it is important that this site is here for those people whose
children have an undiagnosed overgrowth syndrome.  However many of us
(lol I haven't posted anywhere for a long time) seem to post also on
the Sotos site.  I think that is because actually a lot of our
children have really similar symptoms in common regardless of their
dx and there is a wealth of information and people on the sotos site
which I know I draw on despite Finn testing neg for nsd1 change.
Finn is so similar in every way to the children on the group
(although of course all the kids are different in their own ways),
that I always know if I am looking for something someone there will
have btdt.  However as I say, making sure that people who come new to
this site know we are all still here and reading too is important. 
Maybe we should all make sure we post intermittently even if it is
once per week, just to let others who find us know we are still
active?
Miranda

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, maxine powis
<mxnpowis@...> wrote:
>
> im sure they will,its too good a thing to let slide! we all get
really busy sometimes,i never seem to have enough hours in my
world!!! maxine
>
> Hair Doctor <hairdoctor@...> wrote:           This site is in the
links section of the Sotos site, so if anyone were looking hard
enough, they'd find it.   There are quite a few members here, but I
guess they are real busy with their special kids these days.  Maybe
one day they'll pop back in and see these posts!
>   Sarah
>   
>   My Yahoo 360 Page
> http://360.yahoo.com/waytoopoortobeme
>     ----- Original Message -----
>   From: susan smith
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 6:04 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>  
>
>   Hi again Maxine
>   I wonder whether it would be a good idea to mention this site on
the Sotos one because I think there are several on there without a
diagnosis.  That is how I found out about this site in the first
place because someone had "advertised" it.  I remember how pleased I
was to find it as it was such an active site about a year ago.
>   
>   Susan
>     ----- Original Message -----
>   From: maxine powis
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 10:05 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>  
>
> thanks ,i agree about keeping this site active,but what can we do
in order to get people in our position to use it,it would be great if
more people used it ,it could benefit us all,its not really used
much ,maybe people arent aware of it? take care ,maxine xx
>
> shannick145 <shannick@...> wrote:     Hi Maxine
>   I thought I would reply to your post on this site, to keep it
active.  It would be a pity if a new person coming on here was put
off because of lack of activity and then didn't post.  They could
just be the person you or I need in helping our children get a
diagnosis.
>   Re the blood testing, Shannon's dad and I both had to give DNA
samples through blood which was done at the hospital at the request
of our geneticist.  I could imagine a GP not being able to do it
because I would imagine it would be far more involved than an
ordinary blood test.  We didn't have to have photos taken but Shannon
had lots.  We had to give a lot of information about ourselves though.
>   I was so pleased to hear that Michael is walking and has started
to use words.  You must be so thrilled.
>   Good to hear from you
>   Susan UK
>   
>
>    
> ---------------------------------
>   Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide
with voicemail
>
>   SPONSORED LINKS
>         Genetic disorders   Fragile x syndrome
>    
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>    
>     Visit your group "UndiagnosedOvergrowthSyndromes" on the web.
>    
>     To unsubscribe from this group, send an email to:
>  UndiagnosedOvergrowthSyndromes-unsubscribe@yahoogroups.com
>    
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>    
> ---------------------------------
>  
>
>
>
>            
> ---------------------------------
> To help you stay safe and secure online, we've developed the all
new Yahoo! Security Centre.
>

---

Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

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

From: maxine powis

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Friday, April 07, 2006 1:06 PM

Subject: Re: [UndiagnosedOvergrowthSyndromes] Re: To miranda

miranda,i agree we should all post maybe once a week,one to support each other,and two to keep it going,can i ask whats your sons story if you dont mind me asking? thanks maxine

finnedward98 <finnedward98@...> wrote:

I think it is important that this site is here for those people whose
children have an undiagnosed overgrowth syndrome.  However many of us
(lol I haven't posted anywhere for a long time) seem to post also on
the Sotos site.  I think that is because actually a lot of our
children have really similar symptoms in common regardless of their
dx and there is a wealth of information and people on the sotos site
which I know I draw on despite Finn testing neg for nsd1 change.
Finn is so similar in every way to the children on the group
(although of course all the kids are different in their own ways),
that I always know if I am looking for something someone there will
have btdt.  However as I say, making sure that people who come new to
this site know we are all still here and reading too is important. 
Maybe we should all make sure we post intermittently even if it is
once per week, just to let others who find us know we are still
active?
Miranda

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, maxine powis
<mxnpowis@...> wrote:
>
> im sure they will,its too good a thing to let slide! we all get
really busy sometimes,i never seem to have enough hours in my
world!!! maxine
>
> Hair Doctor <hairdoctor@...> wrote:           This site is in the
links section of the Sotos site, so if anyone were looking hard
enough, they'd find it.   There are quite a few members here, but I
guess they are real busy with their special kids these days.  Maybe
one day they'll pop back in and see these posts!
>   Sarah
>   
>   My Yahoo 360 Page
> http://360.yahoo.com/waytoopoortobeme
>     ----- Original Message -----
>   From: susan smith
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 6:04 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>  
>
>   Hi again Maxine
>   I wonder whether it would be a good idea to mention this site on
the Sotos one because I think there are several on there without a
diagnosis.  That is how I found out about this site in the first
place because someone had "advertised" it.  I remember how pleased I
was to find it as it was such an active site about a year ago.
>   
>   Susan
>     ----- Original Message -----
>   From: maxine powis
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 10:05 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>  
>
> thanks ,i agree about keeping this site active,but what can we do
in order to get people in our position to use it,it would be great if
more people used it ,it could benefit us all,its not really used
much ,maybe people arent aware of it? take care ,maxine xx
>
> shannick145 <shannick@...> wrote:     Hi Maxine
>   I thought I would reply to your post on this site, to keep it
active.  It would be a pity if a new person coming on here was put
off because of lack of activity and then didn't post.  They could
just be the person you or I need in helping our children get a
diagnosis.
>   Re the blood testing, Shannon's dad and I both had to give DNA
samples through blood which was done at the hospital at the request
of our geneticist.  I could imagine a GP not being able to do it
because I would imagine it would be far more involved than an
ordinary blood test.  We didn't have to have photos taken but Shannon
had lots.  We had to give a lot of information about ourselves though.
>   I was so pleased to hear that Michael is walking and has started
to use words.  You must be so thrilled.
>   Good to hear from you
>   Susan UK
>   
>
>    
> ---------------------------------
>   Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide
with voicemail
>
>   SPONSORED LINKS
>         Genetic disorders   Fragile x syndrome
>    
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>    
>     Visit your group "UndiagnosedOvergrowthSyndromes" on the web.
>    
>     To unsubscribe from this group, send an email to:
>  UndiagnosedOvergrowthSyndromes-unsubscribe@yahoogroups.com
>    
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>    
> ---------------------------------
>  
>
>
>
>            
> ---------------------------------
> To help you stay safe and secure online, we've developed the all
new Yahoo! Security Centre.
>

---

Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

I think it is important that this site is here for those people whose
children have an undiagnosed overgrowth syndrome.  However many of us
(lol I haven't posted anywhere for a long time) seem to post also on
the Sotos site.  I think that is because actually a lot of our
children have really similar symptoms in common regardless of their
dx and there is a wealth of information and people on the sotos site
which I know I draw on despite Finn testing neg for nsd1 change.
Finn is so similar in every way to the children on the group
(although of course all the kids are different in their own ways),
that I always know if I am looking for something someone there will
have btdt.  However as I say, making sure that people who come new to
this site know we are all still here and reading too is important. 
Maybe we should all make sure we post intermittently even if it is
once per week, just to let others who find us know we are still
active?
Miranda

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, maxine powis
<mxnpowis@...> wrote:
>
> im sure they will,its too good a thing to let slide! we all get
really busy sometimes,i never seem to have enough hours in my
world!!! maxine
>
> Hair Doctor <hairdoctor@...> wrote:           This site is in the
links section of the Sotos site, so if anyone were looking hard
enough, they'd find it.   There are quite a few members here, but I
guess they are real busy with their special kids these days.  Maybe
one day they'll pop back in and see these posts!
>   Sarah
>   
>   My Yahoo 360 Page
> http://360.yahoo.com/waytoopoortobeme
>     ----- Original Message -----
>   From: susan smith
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 6:04 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>  
>
>   Hi again Maxine
>   I wonder whether it would be a good idea to mention this site on
the Sotos one because I think there are several on there without a
diagnosis.  That is how I found out about this site in the first
place because someone had "advertised" it.  I remember how pleased I
was to find it as it was such an active site about a year ago.
>   
>   Susan
>     ----- Original Message -----
>   From: maxine powis
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 10:05 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>  
>
> thanks ,i agree about keeping this site active,but what can we do
in order to get people in our position to use it,it would be great if
more people used it ,it could benefit us all,its not really used
much ,maybe people arent aware of it? take care ,maxine xx
>
> shannick145 <shannick@...> wrote:     Hi Maxine
>   I thought I would reply to your post on this site, to keep it
active.  It would be a pity if a new person coming on here was put
off because of lack of activity and then didn't post.  They could
just be the person you or I need in helping our children get a
diagnosis.
>   Re the blood testing, Shannon's dad and I both had to give DNA
samples through blood which was done at the hospital at the request
of our geneticist.  I could imagine a GP not being able to do it
because I would imagine it would be far more involved than an
ordinary blood test.  We didn't have to have photos taken but Shannon
had lots.  We had to give a lot of information about ourselves though.
>   I was so pleased to hear that Michael is walking and has started
to use words.  You must be so thrilled.
>   Good to hear from you
>   Susan UK
>   
>
>    
> ---------------------------------
>   Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide
with voicemail
>
>   SPONSORED LINKS
>         Genetic disorders   Fragile x syndrome
>    
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>    
>     Visit your group "UndiagnosedOvergrowthSyndromes" on the web.
>    
>     To unsubscribe from this group, send an email to:
>  UndiagnosedOvergrowthSyndromes-unsubscribe@yahoogroups.com
>    
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>    
> ---------------------------------
>  
>
>
>
>            
> ---------------------------------
> To help you stay safe and secure online, we've developed the all
new Yahoo! Security Centre.
>

That's a great idea Miranda.  I agree most post on the Sotos site (my
daughter has Sotos), but I started this site anyway, because there may be
those who never visited that site who don't bother because Sotos has been
ruled out.  Maybe if they see this site they will know they are welcome
there anyway.
Sarah

My Yahoo 360 Page
http://360.yahoo.com/waytoopoortobeme
----- Original Message -----
From: "finnedward98" <finnedward98@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Thursday, April 06, 2006 6:45 PM
Subject: [UndiagnosedOvergrowthSyndromes] Re: To Maxine


>I think it is important that this site is here for those people whose
> children have an undiagnosed overgrowth syndrome.  However many of us
> (lol I haven't posted anywhere for a long time) seem to post also on
> the Sotos site.  I think that is because actually a lot of our
> children have really similar symptoms in common regardless of their
> dx and there is a wealth of information and people on the sotos site
> which I know I draw on despite Finn testing neg for nsd1 change.
> Finn is so similar in every way to the children on the group
> (although of course all the kids are different in their own ways),
> that I always know if I am looking for something someone there will
> have btdt.  However as I say, making sure that people who come new to
> this site know we are all still here and reading too is important.
> Maybe we should all make sure we post intermittently even if it is
> once per week, just to let others who find us know we are still
> active?
> Miranda
>
> --- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, maxine powis
> <mxnpowis@...> wrote:
>>
>> im sure they will,its too good a thing to let slide! we all get
> really busy sometimes,i never seem to have enough hours in my
> world!!! maxine
>>
>> Hair Doctor <hairdoctor@...> wrote:           This site is in the
> links section of the Sotos site, so if anyone were looking hard
> enough, they'd find it.   There are quite a few members here, but I
> guess they are real busy with their special kids these days.  Maybe
> one day they'll pop back in and see these posts!
>>   Sarah
>>
>>   My Yahoo 360 Page
>> http://360.yahoo.com/waytoopoortobeme
>>     ----- Original Message -----
>>   From: susan smith
>>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>>   Sent: Friday, March 31, 2006 6:04 AM
>>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>>
>>
>>   Hi again Maxine
>>   I wonder whether it would be a good idea to mention this site on
> the Sotos one because I think there are several on there without a
> diagnosis.  That is how I found out about this site in the first
> place because someone had "advertised" it.  I remember how pleased I
> was to find it as it was such an active site about a year ago.
>>
>>   Susan
>>     ----- Original Message -----
>>   From: maxine powis
>>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>>   Sent: Friday, March 31, 2006 10:05 AM
>>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>>
>>
>> thanks ,i agree about keeping this site active,but what can we do
> in order to get people in our position to use it,it would be great if
> more people used it ,it could benefit us all,its not really used
> much ,maybe people arent aware of it? take care ,maxine xx
>>
>> shannick145 <shannick@...> wrote:     Hi Maxine
>>   I thought I would reply to your post on this site, to keep it
> active.  It would be a pity if a new person coming on here was put
> off because of lack of activity and then didn't post.  They could
> just be the person you or I need in helping our children get a
> diagnosis.
>>   Re the blood testing, Shannon's dad and I both had to give DNA
> samples through blood which was done at the hospital at the request
> of our geneticist.  I could imagine a GP not being able to do it
> because I would imagine it would be far more involved than an
> ordinary blood test.  We didn't have to have photos taken but Shannon
> had lots.  We had to give a lot of information about ourselves though.
>>   I was so pleased to hear that Michael is walking and has started
> to use words.  You must be so thrilled.
>>   Good to hear from you
>>   Susan UK
>>
>>
>>
>> ---------------------------------
>>   Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide
> with voicemail
>>
>>   SPONSORED LINKS
>>         Genetic disorders   Fragile x syndrome
>>
>> ---------------------------------
>>   YAHOO! GROUPS LINKS
>>
>>
>>     Visit your group "UndiagnosedOvergrowthSyndromes" on the web.
>>
>>     To unsubscribe from this group, send an email to:
>>  UndiagnosedOvergrowthSyndromes-unsubscribe@yahoogroups.com
>>
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I think it is important that this site is here for those people whose
children have an undiagnosed overgrowth syndrome.  However many of us
(lol I haven't posted anywhere for a long time) seem to post also on
the Sotos site.  I think that is because actually a lot of our
children have really similar symptoms in common regardless of their
dx and there is a wealth of information and people on the sotos site
which I know I draw on despite Finn testing neg for nsd1 change.
Finn is so similar in every way to the children on the group
(although of course all the kids are different in their own ways),
that I always know if I am looking for something someone there will
have btdt.  However as I say, making sure that people who come new to
this site know we are all still here and reading too is important.
Maybe we should all make sure we post intermittently even if it is
once per week, just to let others who find us know we are still
active?
Miranda

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, maxine powis
<mxnpowis@...> wrote:
>
> im sure they will,its too good a thing to let slide! we all get
really busy sometimes,i never seem to have enough hours in my
world!!! maxine
>
> Hair Doctor <hairdoctor@...> wrote:           This site is in the
links section of the Sotos site, so if anyone were looking hard
enough, they'd find it.   There are quite a few members here, but I
guess they are real busy with their special kids these days.  Maybe
one day they'll pop back in and see these posts!
>   Sarah
>
>   My Yahoo 360 Page
> http://360.yahoo.com/waytoopoortobeme
>     ----- Original Message -----
>   From: susan smith
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 6:04 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>
>
>   Hi again Maxine
>   I wonder whether it would be a good idea to mention this site on
the Sotos one because I think there are several on there without a
diagnosis.  That is how I found out about this site in the first
place because someone had "advertised" it.  I remember how pleased I
was to find it as it was such an active site about a year ago.
>
>   Susan
>     ----- Original Message -----
>   From: maxine powis
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 10:05 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>
>
> thanks ,i agree about keeping this site active,but what can we do
in order to get people in our position to use it,it would be great if
more people used it ,it could benefit us all,its not really used
much ,maybe people arent aware of it? take care ,maxine xx
>
> shannick145 <shannick@...> wrote:     Hi Maxine
>   I thought I would reply to your post on this site, to keep it
active.  It would be a pity if a new person coming on here was put
off because of lack of activity and then didn't post.  They could
just be the person you or I need in helping our children get a
diagnosis.
>   Re the blood testing, Shannon's dad and I both had to give DNA
samples through blood which was done at the hospital at the request
of our geneticist.  I could imagine a GP not being able to do it
because I would imagine it would be far more involved than an
ordinary blood test.  We didn't have to have photos taken but Shannon
had lots.  We had to give a lot of information about ourselves though.
>   I was so pleased to hear that Michael is walking and has started
to use words.  You must be so thrilled.
>   Good to hear from you
>   Susan UK
>
>
>
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with voicemail
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 This site is in the links section of the Sotos site, so if anyone were looking hard enough, they'd find it.   There are quite a few members here, but I guess they are real busy with their special kids these days.  Maybe one day they'll pop back in and see these posts!

Sarah

 

My Yahoo 360 Page
http://360.yahoo.com/waytoopoortobeme

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

From: susan smith

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Friday, March 31, 2006 6:04 AM

Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine

Hi again Maxine

I wonder whether it would be a good idea to mention this site on the Sotos one because I think there are several on there without a diagnosis.  That is how I found out about this site in the first place because someone had "advertised" it.  I remember how pleased I was to find it as it was such an active site about a year ago.

 

Susan

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

From: maxine powis

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Friday, March 31, 2006 10:05 AM

Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine

thanks ,i agree about keeping this site active,but what can we do in order to get people in our position to use it,it would be great if more people used it ,it could benefit us all,its not really used much ,maybe people arent aware of it? take care ,maxine xx

shannick145 <shannick@...> wrote:

Hi Maxine

I thought I would reply to your post on this site, to keep it active.  It would be a pity if a new person coming on here was put off because of lack of activity and then didn't post.  They could just be the person you or I need in helping our children get a diagnosis.

Re the blood testing, Shannon's dad and I both had to give DNA samples through blood which was done at the hospital at the request of our geneticist.  I could imagine a GP not being able to do it because I would imagine it would be far more involved than an ordinary blood test.  We didn't have to have photos taken but Shannon had lots.  We had to give a lot of information about ourselves though.

I was so pleased to hear that Michael is walking and has started to use words.  You must be so thrilled.

Good to hear from you

Susan UK

 

---

Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

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

From: susan smith

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Friday, March 31, 2006 6:04 AM

Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine

Hi again Maxine

I wonder whether it would be a good idea to mention this site on the Sotos one because I think there are several on there without a diagnosis.  That is how I found out about this site in the first place because someone had "advertised" it.  I remember how pleased I was to find it as it was such an active site about a year ago.

 

Susan

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

From: maxine powis

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Friday, March 31, 2006 10:05 AM

Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine

thanks ,i agree about keeping this site active,but what can we do in order to get people in our position to use it,it would be great if more people used it ,it could benefit us all,its not really used much ,maybe people arent aware of it? take care ,maxine xx

shannick145 <shannick@...> wrote:

Hi Maxine

I thought I would reply to your post on this site, to keep it active.  It would be a pity if a new person coming on here was put off because of lack of activity and then didn't post.  They could just be the person you or I need in helping our children get a diagnosis.

Re the blood testing, Shannon's dad and I both had to give DNA samples through blood which was done at the hospital at the request of our geneticist.  I could imagine a GP not being able to do it because I would imagine it would be far more involved than an ordinary blood test.  We didn't have to have photos taken but Shannon had lots.  We had to give a lot of information about ourselves though.

I was so pleased to hear that Michael is walking and has started to use words.  You must be so thrilled.

Good to hear from you

Susan UK

 

---

Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

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

From: maxine powis

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Friday, March 31, 2006 10:05 AM

Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine

thanks ,i agree about keeping this site active,but what can we do in order to get people in our position to use it,it would be great if more people used it ,it could benefit us all,its not really used much ,maybe people arent aware of it? take care ,maxine xx

shannick145 <shannick@...> wrote:

Hi Maxine

I thought I would reply to your post on this site, to keep it active.  It would be a pity if a new person coming on here was put off because of lack of activity and then didn't post.  They could just be the person you or I need in helping our children get a diagnosis.

Re the blood testing, Shannon's dad and I both had to give DNA samples through blood which was done at the hospital at the request of our geneticist.  I could imagine a GP not being able to do it because I would imagine it would be far more involved than an ordinary blood test.  We didn't have to have photos taken but Shannon had lots.  We had to give a lot of information about ourselves though.

I was so pleased to hear that Michael is walking and has started to use words.  You must be so thrilled.

Good to hear from you

Susan UK

 

---

Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

Hi Maxine

I thought I would reply to your post on this site, to keep it active.  It would be a pity if a new person coming on here was put off because of lack of activity and then didn't post.  They could just be the person you or I need in helping our children get a diagnosis.

Re the blood testing, Shannon's dad and I both had to give DNA samples through blood which was done at the hospital at the request of our geneticist.  I could imagine a GP not being able to do it because I would imagine it would be far more involved than an ordinary blood test.  We didn't have to have photos taken but Shannon had lots.  We had to give a lot of information about ourselves though.

I was so pleased to hear that Michael is walking and has started to use words.  You must be so thrilled.

Good to hear from you

Susan UK

 

Hi Maxine

I thought I would reply to your post on this site, to keep it active.  It would be a pity if a new person coming on here was put off because of lack of activity and then didn't post.  They could just be the person you or I need in helping our children get a diagnosis.

Re the blood testing, Shannon's dad and I both had to give DNA samples through blood which was done at the hospital at the request of our geneticist.  I could imagine a GP not being able to do it because I would imagine it would be far more involved than an ordinary blood test.  We didn't have to have photos taken but Shannon had lots.  We had to give a lot of information about ourselves though.

I was so pleased to hear that Michael is walking and has started to use words.  You must be so thrilled.

Good to hear from you

Susan UK

Hi Maxine

I am pleased you volunteered to be a moderator, well done.  Shannon has been off school this week, first with sickness for two days, then with a chest infection, but the doctor thinks the sickness might have been due to congestion rather than a bug.  She has a temperature of 39c (quite low for her, it usually goes up to 41c), not eating, coughing violently and laying on the sofa, yet every morning she asks if she can go to school.  At 8 1/2  she still doesn't recognise being ill! 

 

Have you ever contacted the Child Growth Foundation about Michael?  Its just that I have received their recent newsletter and Premature Sexual Maturation comes under their umbrella.  I am so pleased that he has settled well into the nursery.  It is always a wrench when your child leaves you for the first time like that, but you can relax if you know he is happy and well catered for.

 

Have a good weekend.

Susan 

 

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

From: maxine powis

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Saturday, March 11, 2006 1:08 PM

Subject: Re: [UndiagnosedOvergrowthSyndromes] Do we have overgrowth syndrome? wise words ,susan!

susan,as usual ,you put it perfectly,i think an  endocrinologist would also be able to help rule out a hormonal imbalance  etc,just to be on the safe side, ,hows your family doing while im on here? ive been so busy its unreal,michael started a special nursery 2 days a week last week,he loves it,there are 4 other children in the group and it turns out we know them all ,so its lovely,he really enjoys it! hows shannon doing,i hope well,ive nagged the genetist to see michael within 6 weeks, i did some eexagarating but i needed to  get to see her so i rtried that and it worked otherwise id wait for ages! shes going to do bone xrays to rule out mc cune albright syndrome im praying its not that one,hopefully shell spot something that might give us a clue,she hasnt sen him since last june and alots changed since then,ill keep you posted,let me know how you all are,ive been made a moderator on here so ill be popping on regulary!! maxine annick@...> wrote:

Hi Stephanie
There are a large number of Overgrowth Syndromes, some of which have names
but others are so rare or not yet recognised that they do not have a name as
of yet (hence the need for this site).  One of these is called Sotos
Syndrome and I wonder whether you mistakenly heard that name.  The main
feature of Overgrowth is excessive height in children which usually, but not
always, slows down after puberty, so that the child becomes a tall adult but
not necessarily excessively tall.  Being overweight can I believe also be a
feature, but often the child is not overweight for their height, just their
age.

Overgrowth Syndromes are very often, but not always, accompanied by advanced
bone age, learning difficulties, late milestones, early feeding problems,
delayed speech, poor gross and fine motor skills, late in toilet training,
respiratory problems, low muscle tone, high tolerance of pain and illness,
seizures, and autistic type behaviour.  Some people might only show some of
these traits.  Children usually make steady progress, so that they "get
there in the end", but are behind their peers.  In addition each syndrome
has its own physical features although they can be slight and not recognised
unless you knew what to look for.

If any of this seems familiar to you, then I would suggest you ask your
doctor to get your daughter an appointment with a geneticist.  This would be
a starting point for you, and details of family history would be taken into
account in making a diagnosis.

One thing I have learned as a mother, is to go with your gut instincts, so
if you are concerned, and it sounds like y ou have given it some thought
already, then contact your doctor anyway, if only to put your mind at rest.

Hope this helps

Susan UK


----- Original Message -----
From: "Stephanie" <tysmoochy@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Friday, March 10, 2006 4:24 PM
Subject: [UndiagnosedOvergrowthSyndromes] Do we have overgrowth syndrome?


>I saw a show last night on the Discovery Health Channel about a
> little boy who weighed 84lbs when he was two who lived in the UK.
> Something with his story struck me. He started out life throwing up
> and couldn't hold food down and then after a period of time, would
> always cry and couldn't get enough milk. He had a syndrome called
> Moto's. I don't think I have that because I don't have the same
> problems like him, but I wonder if my family doesn't have a
> overgrowth syndrome. I've always thought we had "someth ing". I was
> 320 lbs. in the 8th grade and this was back when being heavy wasn't
> common like it is today. My Mom and also my daughter are heavy
> although since I started eating a low glycemic diet(only eat the
> carbs that don't raise my blood sugar levels..I'm not diabetic) I
> have been able to acheive a more normal weight and so has my
> daughter. We still are some what heavy though. I'm 190 lbs and 38
> years old and she is almost 11 and weighs 126 lbs. We both also had
> very early growth and I don't know about me but her and her brother
> have always been over the 100% in growth weight and height although
> we don't come from a family of people who are tall...it seems we
> grow fast and then level off to normal height. I also have twin
> nephews and one is very heavy(maybe 300 lbs and they are 17) and the
> other is somewhat heavy. They are identical except in weight. Does
> anyone know of any syndromes we might fit under that I could
> research? How do you all find out what you have? Do your primary
> doctors send you to a specialist? Any advice would be greatly
> appreciated.
>
> Stephanie
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

---

To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre.

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

From: maxine powis

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Saturday, March 11, 2006 1:08 PM

Subject: Re: [UndiagnosedOvergrowthSyndromes] Do we have overgrowth syndrome? wise words ,susan!

susan,as usual ,you put it perfectly,i think an  endocrinologist would also be able to help rule out a hormonal imbalance  etc,just to be on the safe side, ,hows your family doing while im on here? ive been so busy its unreal,michael started a special nursery 2 days a week last week,he loves it,there are 4 other children in the group and it turns out we know them all ,so its lovely,he really enjoys it! hows shannon doing,i hope well,ive nagged the genetist to see michael within 6 weeks, i did some eexagarating but i needed to  get to see her so i rtried that and it worked otherwise id wait for ages! shes going to do bone xrays to rule out mc cune albright syndrome im praying its not that one,hopefully shell spot something that might give us a clue,she hasnt sen him since last june and alots changed since then,ill keep you posted,let me know how you all are,ive been made a moderator on here so ill be popping on regulary!! maxine annick@...> wrote:

Hi Stephanie
There are a large number of Overgrowth Syndromes, some of which have names
but others are so rare or not yet recognised that they do not have a name as
of yet (hence the need for this site).  One of these is called Sotos
Syndrome and I wonder whether you mistakenly heard that name.  The main
feature of Overgrowth is excessive height in children which usually, but not
always, slows down after puberty, so that the child becomes a tall adult but
not necessarily excessively tall.  Being overweight can I believe also be a
feature, but often the child is not overweight for their height, just their
age.

Overgrowth Syndromes are very often, but not always, accompanied by advanced
bone age, learning difficulties, late milestones, early feeding problems,
delayed speech, poor gross and fine motor skills, late in toilet training,
respiratory problems, low muscle tone, high tolerance of pain and illness,
seizures, and autistic type behaviour.  Some people might only show some of
these traits.  Children usually make steady progress, so that they "get
there in the end", but are behind their peers.  In addition each syndrome
has its own physical features although they can be slight and not recognised
unless you knew what to look for.

If any of this seems familiar to you, then I would suggest you ask your
doctor to get your daughter an appointment with a geneticist.  This would be
a starting point for you, and details of family history would be taken into
account in making a diagnosis.

One thing I have learned as a mother, is to go with your gut instincts, so
if you are concerned, and it sounds like y ou have given it some thought
already, then contact your doctor anyway, if only to put your mind at rest.

Hope this helps

Susan UK


----- Original Message -----
From: "Stephanie" <tysmoochy@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Friday, March 10, 2006 4:24 PM
Subject: [UndiagnosedOvergrowthSyndromes] Do we have overgrowth syndrome?


>I saw a show last night on the Discovery Health Channel about a
> little boy who weighed 84lbs when he was two who lived in the UK.
> Something with his story struck me. He started out life throwing up
> and couldn't hold food down and then after a period of time, would
> always cry and couldn't get enough milk. He had a syndrome called
> Moto's. I don't think I have that because I don't have the same
> problems like him, but I wonder if my family doesn't have a
> overgrowth syndrome. I've always thought we had "someth ing". I was
> 320 lbs. in the 8th grade and this was back when being heavy wasn't
> common like it is today. My Mom and also my daughter are heavy
> although since I started eating a low glycemic diet(only eat the
> carbs that don't raise my blood sugar levels..I'm not diabetic) I
> have been able to acheive a more normal weight and so has my
> daughter. We still are some what heavy though. I'm 190 lbs and 38
> years old and she is almost 11 and weighs 126 lbs. We both also had
> very early growth and I don't know about me but her and her brother
> have always been over the 100% in growth weight and height although
> we don't come from a family of people who are tall...it seems we
> grow fast and then level off to normal height. I also have twin
> nephews and one is very heavy(maybe 300 lbs and they are 17) and the
> other is somewhat heavy. They are identical except in weight. Does
> anyone know of any syndromes we might fit under that I could
> research? How do you all find out what you have? Do your primary
> doctors send you to a specialist? Any advice would be greatly
> appreciated.
>
> Stephanie
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

---

To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre.

Hi Stephanie
There are a large number of Overgrowth Syndromes, some of which have names
but others are so rare or not yet recognised that they do not have a name as
of yet (hence the need for this site).  One of these is called Sotos
Syndrome and I wonder whether you mistakenly heard that name.  The main
feature of Overgrowth is excessive height in children which usually, but not
always, slows down after puberty, so that the child becomes a tall adult but
not necessarily excessively tall.  Being overweight can I believe also be a
feature, but often the child is not overweight for their height, just their
age.

Overgrowth Syndromes are very often, but not always, accompanied by advanced
bone age, learning difficulties, late milestones, early feeding problems,
delayed speech, poor gross and fine motor skills, late in toilet training,
respiratory problems, low muscle tone, high tolerance of pain and illness,
seizures, and autistic type behaviour.  Some people might only show some of
these traits.  Children usually make steady progress, so that they "get
there in the end", but are behind their peers.  In addition each syndrome
has its own physical features although they can be slight and not recognised
unless you knew what to look for.

If any of this seems familiar to you, then I would suggest you ask your
doctor to get your daughter an appointment with a geneticist.  This would be
a starting point for you, and details of family history would be taken into
account in making a diagnosis.

One thing I have learned as a mother, is to go with your gut instincts, so
if you are concerned, and it sounds like you have given it some thought
already, then contact your doctor anyway, if only to put your mind at rest.

Hope this helps

Susan UK


----- Original Message -----
From: "Stephanie" <tysmoochy@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Friday, March 10, 2006 4:24 PM
Subject: [UndiagnosedOvergrowthSyndromes] Do we have overgrowth syndrome?


>I saw a show last night on the Discovery Health Channel about a
> little boy who weighed 84lbs when he was two who lived in the UK.
> Something with his story struck me. He started out life throwing up
> and couldn't hold food down and then after a period of time, would
> always cry and couldn't get enough milk. He had a syndrome called
> Moto's. I don't think I have that because I don't have the same
> problems like him, but I wonder if my family doesn't have a
> overgrowth syndrome. I've always thought we had "something". I was
> 320 lbs. in the 8th grade and this was back when being heavy wasn't
> common like it is today. My Mom and also my daughter are heavy
> although since I started eating a low glycemic diet(only eat the
> carbs that don't raise my blood sugar levels..I'm not diabetic) I
> have been able to acheive a more normal weight and so has my
> daughter. We still are some what heavy though. I'm 190 lbs and 38
> years old and she is almost 11 and weighs 126 lbs. We both also had
> very early growth and I don't know about me but her and her brother
> have always been over the 100% in growth weight and height although
> we don't come from a family of people who are tall...it seems we
> grow fast and then level off to normal height. I also have twin
> nephews and one is very heavy(maybe 300 lbs and they are 17) and the
> other is somewhat heavy. They are identical except in weight. Does
> anyone know of any syndromes we might fit under that I could
> research? How do you all find out what you have? Do your primary
> doctors send you to a specialist? Any advice would be greatly
> appreciated.
>
> Stephanie
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

I saw a show last night on the Discovery Health Channel about a
little boy who weighed 84lbs when he was two who lived in the UK.
Something with his story struck me. He started out life throwing up
and couldn't hold food down and then after a period of time, would
always cry and couldn't get enough milk. He had a syndrome called
Moto's. I don't think I have that because I don't have the same
problems like him, but I wonder if my family doesn't have a
overgrowth syndrome. I've always thought we had "something". I was
320 lbs. in the 8th grade and this was back when being heavy wasn't
common like it is today. My Mom and also my daughter are heavy
although since I started eating a low glycemic diet(only eat the
carbs that don't raise my blood sugar levels..I'm not diabetic) I
have been able to acheive a more normal weight and so has my
daughter. We still are some what heavy though. I'm 190 lbs and 38
years old and she is almost 11 and weighs 126 lbs. We both also had
very early growth and I don't know about me but her and her brother
have always been over the 100% in growth weight and height although
we don't come from a family of people who are tall...it seems we
grow fast and then level off to normal height. I also have twin
nephews and one is very heavy(maybe 300 lbs and they are 17) and the
other is somewhat heavy. They are identical except in weight. Does
anyone know of any syndromes we might fit under that I could
research? How do you all find out what you have? Do your primary
doctors send you to a specialist? Any advice would be greatly
appreciated.

Stephanie

Hi Stephanie
There are a large number of Overgrowth Syndromes, some of which have names
but others are so rare or not yet recognised that they do not have a name as
of yet (hence the need for this site).  One of these is called Sotos
Syndrome and I wonder whether you mistakenly heard that name.  The main
feature of Overgrowth is excessive height in children which usually, but not
always, slows down after puberty, so that the child becomes a tall adult but
not necessarily excessively tall.  Being overweight can I believe also be a
feature, but often the child is not overweight for their height, just their
age.

Overgrowth Syndromes are very often, but not always, accompanied by advanced
bone age, learning difficulties, late milestones, early feeding problems,
delayed speech, poor gross and fine motor skills, late in toilet training,
respiratory problems, low muscle tone, high tolerance of pain and illness,
seizures, and autistic type behaviour.  Some people might only show some of
these traits.  Children usually make steady progress, so that they "get
there in the end", but are behind their peers.  In addition each syndrome
has its own physical features although they can be slight and not recognised
unless you knew what to look for.

If any of this seems familiar to you, then I would suggest you ask your
doctor to get your daughter an appointment with a geneticist.  This would be
a starting point for you, and details of family history would be taken into
account in making a diagnosis.

One thing I have learned as a mother, is to go with your gut instincts, so
if you are concerned, and it sounds like you have given it some thought
already, then contact your doctor anyway, if only to put your mind at rest.

Hope this helps

Susan UK


----- Original Message -----
From: "Stephanie" <tysmoochy@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Friday, March 10, 2006 4:24 PM
Subject: [UndiagnosedOvergrowthSyndromes] Do we have overgrowth syndrome?


>I saw a show last night on the Discovery Health Channel about a
> little boy who weighed 84lbs when he was two who lived in the UK.
> Something with his story struck me. He started out life throwing up
> and couldn't hold food down and then after a period of time, would
> always cry and couldn't get enough milk. He had a syndrome called
> Moto's. I don't think I have that because I don't have the same
> problems like him, but I wonder if my family doesn't have a
> overgrowth syndrome. I've always thought we had "something". I was
> 320 lbs. in the 8th grade and this was back when being heavy wasn't
> common like it is today. My Mom and also my daughter are heavy
> although since I started eating a low glycemic diet(only eat the
> carbs that don't raise my blood sugar levels..I'm not diabetic) I
> have been able to acheive a more normal weight and so has my
> daughter. We still are some what heavy though. I'm 190 lbs and 38
> years old and she is almost 11 and weighs 126 lbs. We both also had
> very early growth and I don't know about me but her and her brother
> have always been over the 100% in growth weight and height although
> we don't come from a family of people who are tall...it seems we
> grow fast and then level off to normal height. I also have twin
> nephews and one is very heavy(maybe 300 lbs and they are 17) and the
> other is somewhat heavy. They are identical except in weight. Does
> anyone know of any syndromes we might fit under that I could
> research? How do you all find out what you have? Do your primary
> doctors send you to a specialist? Any advice would be greatly
> appreciated.
>
> Stephanie
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