Hello to all!

I just wanted to introduce myself. My name is Amy and I live in
Janesville, WI. My son is 5 years old and his name is Connor. Connor
recently received a clinical diagnosis for being a 'Sotos-like"
child. He meets all of the criteria as described by our Neurologist.
This has been shocking, a relief, etc - a whole roller coaster of
emotions I guess you could say. For the past 3 years Connor has been
(mis) diagnosed as "severely autistic", however no Dr could ever give
us a "for sure" plot on the spectrum, as far as what type of autisim
he had.

I also just joined the Yahoo Sotos group as well, so I am hoping
between the two I can find some tips, advice, whatever from other
caregivers, parents, etc.

Connor's physical characteristics are different... . from his facial
features and physial features. He also has behaviors that are
autistic-like, but obviously something different. He had the early
erruption of teeth (4 teeth by 3 months old) as well as current
discoloration, slanted eyes, high forehead, overgrowth (Connor is 5
years old and is 4'3" and 86 lbs) ANYTHING you know about
characteristics that is Connor to a TEE! It was such a relief because
now I know what this is, because I always knew this was NOT autisim.
I have never had anything make so much sense regarding my son.

My goal for joining this group is to share my journey with you all,
receive and give advice, share pictures (as soon as I get them
loaded), and to basically learn, talk, vent, etc. I think as we all
know, this is a very challenging disability for EVERYONE - the
patient and the caretaker/parent. I know I am in need of support and
am hoping to create connections that will help me and Connor through
this unknown territory.

Connor is scheduled for his MRI and wrist X-rays on Febuary 5th. They
will be sedating him for the procedure as he would never be still for
that long. We are having this done at St. Mary's Hospital in Madison,
WI and I am hoping the tests will give us a better idea of what we
are dealing with. I believe they are also taking blood that day for
the FISH test that Dr. Dominsky (neurologist) was telling me about.

Questions, concerns, advice, venting..... .contact me!! I just jumped
into the current century and finally got internet in my home, so I am
moving up in the world!! LOL Thank you for having this group
available when there are so few resouces for patients, caretakers,
parents, guardians, and families. I think people sometimes forget
that this disorder effects all family members and siblings as well.
Connor has a 3 year old sister who tries to beat up anyone who makes
fun of her brother and we are trying to curb that right now.

Ahhh, Sotos.....but at least I know more than what I did and despite
the challenges, we have a name for this now.....and that is
remarkable in my eyes.......

Thanks for reading my rambling.... ..love & prayers to all.......

Amy