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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! 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
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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