Hello
I was reading this post, my son 4 Amos DX sotos and white matter
disease and autism, had genetic testing done to confirm sotos, as I
did I joind the site posted, and got a name to the leading doctor on
sotos (Dr SChaffer) and he takes all your data you have gathered
from the doctors and orders tests if need be,, and help with an
accurate dx, I am so glad I went to him, all was done over the
internet and Email very simple.. and I was very pleased with his
results, if you go to that group anyone there will be more then
happy to assit you in the right direction, I am so glad all the test
are done, and all I can do for my son is mega therapy, therapy and
more therapy, I know he will be big and clumsy and akward, that I
can deal with but the delays, hypotonia, non verbal and the serious
issues are at hand, i dont think we even mention sotos anymore ( not
that it doesnt matter) but a true dx makes me sleep better at night
knowing now what we can do for him to get him to independancy...
Will be a struggle, but he has TSS, BS worker, school now,
ot,speech,physical,dysphagia, and easter seals and all has been a
blessing..and i agree a trip to the geneticis is a great step. and
only a simple blood test. Amos has inversion of chromosomes,

wish all well and happiness
ty
Donna and Amos!


--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Pam"
<pamlepro@...> wrote:
>
> 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 90th 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! :-)
> 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 <mailto:awright1136@...> 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
>
>
>
>
>
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