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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 motorsSent: Tuesday, August 30, 2005 12:33 AMSubject: 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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