I have been looking for a cause of my son's odd behaviors since the day
he was born.  My son is now 8 years old and after researching Sotos
Syndrome I am fairly certain that this is the cause.  Here is my
question.  I am currently number 22 on a waiting list to have him seen
by a geneticist.  I have been told that if he is formally diagnosed
with this disorder we as a family and my son as he gets older will have
problems getting health insurance.  Has anyone experienced this?

Because there is no "cure" and we are already treating his problems;
what are the benefits of having a "formal" diagnosis?

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

From: Pam

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Tuesday, August 30, 2005 1:19 AM

Subject: RE: [UndiagnosedOvergrowthSyndromes] Sotos ? maybe this will help?! :)

Hi Lea,

My son is diagnosed as Sotos-like by a doctor who is considered an expert on Sotos Syndrome in conjunction with our local geneticist.  Sotos Syndrome is his specialty and he attends the annual Sotos Conferences.  My son is tall too, a couple of inches shorter than your son and he just turned 6.  I would not worry too much about the calcium as long as he is drinking milk, eating cheese, or other calcium rich products he should be fine.  I imagine your son would have advanced bone age since he is so tall and that is a characteristic of Sotos Syndrome.  Some docs have never heard of Sotos and therefore just say “oh he his is a big kid with delays”.  Sigh!  Our son was speech delayed, but not his vocabulary or understanding.  He has autistic traits…one doc says he has autism other docs who have seen him disagree.  He was tested for Fragile X and it was negative.  He goes to a public school (with an incredible special education program!) and is now mainstreamed with an aide and doing great so far.  He is emotionally/behaviorally younger than his peers.  He does not have tantrums or aggressive behaviors.  Muscle tone is a BIG part of Sotos.  It causes the speech delays and fine/gross motor delays.  I would say it is worth a visit to a geneticist…this is just my “been there done that” opinion!  Your regular pediatrician should have records of his head growth since that is generally part of well visits.  My son’s head has always been 98%...his height and weight above the 95%.  He was 8lbs 11 oz at birth and 23 inches long.  His head is 1 inch smaller than mine and I am 34.  The high arched palate is common in Sotos too.  If you have not been to the Sotos Syndrome Support Association website do take a peek at it…the website is www.well.com/~sssa  and there is an e-group for Sotos too www.health.groups.yahoo.com/group/Sotosyndrome

 

Here is some info from the “Sotos Syndrome…A Handbook for Families”…it is the criteria used to diagnose Sotos Syndrome…hope this helps you!

 

“The “strict criteria” proposed for a diagnosis of Sotos syndrome require at least three of the following:  facial appearance consistent with the original reports; birth length above the 90 percentile; bone age above the 90^th percentile; and early verbal and motor delays.  Many children have large heads, low tone and developmental delay, without the classic constellation which can be confidently called Sotos syndrome.  Children who lack a number of these critical features are more properly classified as showing “Sotos-like” characteristics.  Specialists do not yet know whether these children are part of the spectrum of Sotos syndrome or whether they represent variants or distinct conditions.  For practical purposes, the medical, emotional, educational and behavioral needs are very similar.  Maintaining a distinction will help researchers define these conditions more accurately and will prevent mistaken assumptions with regard to particular children.  On the whole, our experience is that children with Sotos-like patterns may resolved their early tone and speech problems more completely than children with Classic Sotos syndrome.”

 

The facial appearance is tall narrow skull with a prominent forehead and pointed chin.  My son has a tall skull, but it is not narrow and he has the prominent chin now that the baby chub has left his face!  J   There are some pictures of kids on yahoo site maybe you could see if your son resembles any of the kids.  My son is Kevin (Sotos-like) and there is a pic of him there. 

 

Honestly you best bet for finding out if he has Sotos is a geneticist visit since most docs have never heard of it before!  Good luck and take care!

Pam

(Mom to Kevin age 6 Sotos-like and Jamie 7 months)  BTW we live in MA. 

 

 

          

 

-----Original Message-----
From: UndiagnosedOvergrowthSyndromes@yahoogroups.com [mailto:UndiagnosedOvergrowthSyndromes@yahoogroups.com] On Behalf Of dlp
Sent: Monday, August 29, 2005 9:53 AM
To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
Subject: [UndiagnosedOvergrowthSyndromes] Need help too!

 

Hi Angie -

Are there any sure indicators of Sotos? Like a feature to look for, if the child doesn't have it, then it's not Sotos?

I've had my son tested for Fragile X - not that - but he has always been above the 100% band for height growth.

He has grown about an inch in the past 3 weeks, but that's nothing new. He's 4 foot 4 inches at 5 yrs 6months. He has a high arched palete (which I only noticed today - when checking his sore throat). This has never been picked up by a doctor. He has long fingers and large hands. Got his first 2 teeth at 5 months, then about 6 teeth at 1 year. I've not kept a record of his head growth, but he does have a largish head. How can I be right that he should be this tall so young. He's in good proportion, so one doc said not to worry. He's had no problems with fits, he gets a sore tummy easily, so is wary of what food he eats (mainly macaroni cheese, pureed fruit, fish for dinner). He's a very insightful little person. He can also act very autistic. He goes to an autistic school, but today I had this flash of insight about his muscle tone being a bigger part of his delays (speech (but not language - large vocab), gross and fine motor skills). He has slightly downward eyes, small chin with a dimple.

 

Should I be getting a referral to a genetic clinic for children? What would they be able to do - I have the feeling he needs more calcium as he is growing bones at unnatural rates. He honestly looks 9 or 10 and it's awful, because he has trouble getting his words out and is starting to get a hard time from peers. Emotionally he is acting younger too.

 

Please help with feedback if you can? Does it sound like Sotos?

 

Thanks,

Lea

 

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

From: Parkland motors

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Tuesday, August 30, 2005 12:33 AM

Subject: Re: [UndiagnosedOvergrowthSyndromes] Please Help!

 

Dear Nicole,

   If your daughter is to large for a infant seat I assume she looks older than 10 months.

My son has Sotos so by the time he was around 8 months his infant  seat had to go.

I bought a seat that had only belts(no bar for pulling down) it also reclined so his head would not flop.

Since he had no muscle tone to hold his head up. Dont fret it, I dont think the police will give you a ticket for being a good mom of a large baby.

best of luck.

angie

alexsma1 <alexsma1@...> wrote:

Hi there.  I just joined the group and wanted to first say
Thank You for all of you who have taken the time to post
messages in this group!  I have only read a few of the entries
and it is really helping me understand this Syndrome. 
My daughter (10months old) is being tested for Sotos Syndrome. 
The FISH test has came back normal but they are checking for mis-
sequencing of the DNA now...which I suppose will determine if it is
Sotos or not.  She has had every test under the sun since she was
born.
My quesion is this......She is only 10 months old but she has out
grown her infant carseat.  The laws here in Illinois state that a
child under the age of 1 year old and/or wights 20 pounds has to
be in a rearfacing carseat.  My problem is, her feet are cramped
and usually on the back of the seat due to her height.  This cannot
be safe!  Does anybody know what I should do or who should I talk
to about this?  I have often wondered if I should call my local
police department.
Please help!  We have already bought a new and bigger carseat but
she just grew out of it 2 months later!

Thanks so much,
Nichole

 

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

From: Parkland motors

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Tuesday, August 30, 2005 12:33 AM

Subject: Re: [UndiagnosedOvergrowthSyndromes] Please Help!

Dear Nicole,

   If your daughter is to large for a infant seat I assume she looks older than 10 months.

My son has Sotos so by the time he was around 8 months his infant  seat had to go.

I bought a seat that had only belts(no bar for pulling down) it also reclined so his head would not flop.

Since he had no muscle tone to hold his head up. Dont fret it, I dont think the police will give you a ticket for being a good mom of a large baby.

best of luck.

angie

alexsma1 <alexsma1@...> wrote:

Hi there.  I just joined the group and wanted to first say
Thank You for all of you who have taken the time to post
messages in this group!  I have only read a few of the entries
and it is really helping me understand this Syndrome. 
My daughter (10months old) is being tested for Sotos Syndrome. 
The FISH test has came back normal but they are checking for mis-
sequencing of the DNA now...which I suppose will determine if it is
Sotos or not.  She has had every test under the sun since she was
born.
My quesion is this......She is only 10 months old but she has out
grown her infant carseat.  The laws here in Illinois state that a
child under the age of 1 year old and/or wights 20 pounds has to
be in a rearfacing carseat.  My problem is, her feet are cramped
and usually on the back of the seat due to her height.  This cannot
be safe!  Does anybody know what I should do or who should I talk
to about this?  I have often wondered if I should call my local
police department.
Please help!  We have already bought a new and bigger carseat but
she just grew out of it 2 months later!

Thanks so much,
Nichole

Hi there.  I just joined the group and wanted to first say
Thank You for all of you who have taken the time to post
messages in this group!  I have only read a few of the entries
and it is really helping me understand this Syndrome. 
My daughter (10months old) is being tested for Sotos Syndrome. 
The FISH test has came back normal but they are checking for mis-
sequencing of the DNA now...which I suppose will determine if it is
Sotos or not.  She has had every test under the sun since she was
born.
My quesion is this......She is only 10 months old but she has out
grown her infant carseat.  The laws here in Illinois state that a
child under the age of 1 year old and/or wights 20 pounds has to
be in a rearfacing carseat.  My problem is, her feet are cramped
and usually on the back of the seat due to her height.  This cannot
be safe!  Does anybody know what I should do or who should I talk
to about this?  I have often wondered if I should call my local
police department.
Please help!  We have already bought a new and bigger carseat but
she just grew out of it 2 months later!

Thanks so much,
Nichole

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

From: alexsma1

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

Sent: Monday, August 29, 2005 4:12 PM

Subject: [UndiagnosedOvergrowthSyndromes] Please Help!

Hi there.  I just joined the group and wanted to first say
Thank You for all of you who have taken the time to post
messages in this group!  I have only read a few of the entries
and it is really helping me understand this Syndrome. 
My daughter (10months old) is being tested for Sotos Syndrome. 
The FISH test has came back normal but they are checking for mis-
sequencing of the DNA now...which I suppose will determine if it is
Sotos or not.  She has had every test under the sun since she was
born.
My quesion is this......She is only 10 months old but she has out
grown her infant carseat.  The laws here in Illinois state that a
child under the age of 1 year old and/or wights 20 pounds has to
be in a rearfacing carseat.  My problem is, her feet are cramped
and usually on the back of the seat due to her height.  This cannot
be safe!  Does anybody know what I should do or who should I talk
to about this?  I have often wondered if I should call my local
police department.
Please help!  We have already bought a new and bigger carseat but
she just grew out of it 2 months later!

Thanks so much,
Nichole

Hi there.  I just joined the group and wanted to first say
Thank You for all of you who have taken the time to post
messages in this group!  I have only read a few of the entries
and it is really helping me understand this Syndrome.
My daughter (10months old) is being tested for Sotos Syndrome.
The FISH test has came back normal but they are checking for mis-
sequencing of the DNA now...which I suppose will determine if it is
Sotos or not.  She has had every test under the sun since she was
born.
My quesion is this......She is only 10 months old but she has out
grown her infant carseat.  The laws here in Illinois state that a
child under the age of 1 year old and/or wights 20 pounds has to
be in a rearfacing carseat.  My problem is, her feet are cramped
and usually on the back of the seat due to her height.  This cannot
be safe!  Does anybody know what I should do or who should I talk
to about this?  I have often wondered if I should call my local
police department.
Please help!  We have already bought a new and bigger carseat but
she just grew out of it 2 months later!

Thanks so much,
Nichole

Note: forwarded message attached.


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Note: forwarded message attached.




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Any of you interested to get information on the latest therapeutic
option in vascular malformations , specially of the KTS type please
contact.  This is non-surgical procedure, uses foam sclerotherapy with
great success, and was recently published in medical journal.

Thanks

RG

Hello!
Look at this healthcare information directory.
URL : http://www.hi-fiweb.com/users/anusha/
Cheers!
Amitha

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

From: donnaleapau

To: UndiagnosedOvergrowthSyndromes@yahoogroups.com

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

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

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

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

With much thanks,
Donna.

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

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

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


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

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

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

With much thanks,
Donna.

Hi!

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

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

Most of the information is available in German.

Taina


The information below is from the article:

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

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


Relevant questions that contribute to a KISS score

Delivery

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

The first months

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

General health

Headaches
Mouth is often open

Sensorimotor development slower than expected

Posture and movement
Language
Concentration
Social integration

Asymmetry

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

Hello,

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

Good day!
Kathy

Soto Syndrome Literature Review

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

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

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

Interesting facts about Sotos syndrome:

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

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

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

Jonathon

Soto Syndrome Literature Review

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

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

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

Interesting facts about Sotos syndrome:

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

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

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

Jonathon

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


Hi, Everyone,

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

Hi, Everyone,

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

Hi Liz

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

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

Best wishes, Susan


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


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

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