No problem!!!  J   I have been in your shoes.  I received a lot of help from people online (the Sotos group) who had been in my shoes and understood what we were going through and our concerns!  I truly believe in sharing information.  To be honest…some of the best information I have gotten is from other parents with special children with regards to raising/helping my son…they walk the walk everyday…the docs mean well but have no clue what day to day life is like sometimes.  Our pediatrician realizes we know more than her with regards to Sotos.  The local geneticist was helpful, but none of them live with a special child.  Take care!

Pam J             

-----Original Message-----
From: UndiagnosedOvergrowthSyndromes@yahoogroups.com [mailto:UndiagnosedOvergrowthSyndromes@yahoogroups.com] On Behalf Of dlp
Sent: Monday, August 29, 2005 10:25 AM
To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
Subject: Re: [UndiagnosedOvergrowthSyndromes] Sotos ? maybe this will help?! :)

----- 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