What the hell is Sotos Syndrome?

Not too long after the MRI I got a call from my mother-in-law. She informed me that when my husband was about 1 years old he was thought to have had Sotos Syndrome by some specialists. But that they had never told him because they didn't want him to grow up thinking he was limited in what he could achieve. They raised him like all their other boys and never felt the need to tell him about what he was thought to have had. Although I am choosing to let Natalie know about her diagnosis I must admit that how they raised Garret worked. He is an amazing man and father with a college degree and a good job. After watching Natalie go through the things he went through his parents decided to let us know about Sotos Syndrome so we could be prepared and tell our doctors.

I had never heard of Sotos Syndrome before. No one I knew had heard of Sotos Syndrome either. So I did what every parent should never do and looked it up on the internet. Some of the things said about Sotos Syndrome scared the stuffing out of me but then other things started to make sense:
large head.........................................check
very tall.............................................check
Slightly protruding forehead................check
triangular face &nails..........................check
underdeveloped nose &nasal bridge....check
nystagmus..........................................check
enlarged ventricles..............................check
gross motor delay...............................check
constipation........................................check
heart concerns....................................check
prefers her routine...............................check
difficult delivery...................................check
jaundice..............................................check
hypotonia...........................................check


Now if you're reading this, you are probably generally aware of what Sotos Syndrome is. For those of you who don't know I'll give you a general explanation:

Sotos Syndrome is also refered to as Cerebral Gigantism and is extremely rare. It most often occurs sporadically (neither parent has the Sotos Gene) but for people with Sotos Syndrome (like my husband) their chance of having a child with Sotos Syndrome is 50/50. One thing to remember is that range of severity is pretty vast and your child may have some of the symptoms but not others and the degree of which those symptoms occur varies as well. The BIG HUGE thing to remember that Sotos Syndrome itself is not life threatening. There is no cure but doctors take more of a treat the symptoms kind of approach. There is often a learning delay associated with Sotos Syndrome ranging from Severe Mental Retardation to a Mild learning disability (around the same level as someone with dyslexia). Those with the milder form of Sotos go on to lead normal lives, be in mainstream classes, self-sufficient, with families and jobs. And another huge thing to remember is that Sotos Syndrome gets better with age! By the time they are adults things begin to stabilize health wise (this is often contributed to the fact that they have finally quit growing by the time they reached adulthood and a lot of their symptoms occur as a result of their rapid growth- it's tough for a little body to keep up with a growth spurt of a quarter inch a week)

A list of symptoms associated with Sotos Syndrome include:
rapid growth
pointed chin
downward slanting eyes
ADHD
Hypoglycemia
Seizures
phobias
tantrums
compulsions
impulsive behaviors
speech delays
gross motor delays ( like with sitting, crawling and standing in early development)
varying degrees of mental abilities
Scoliosis
Heart defects
Kidney defects
Constipation
Jaundice
a VERY slight increase in developing cancer in childhood
hearing and/or vision problems
hypotonia
clumsiness
underdeveloped nose and/or nasal bridge
Large head size
Extra benign cerebral fluid
Autism

Please keep in mind that if your child is diagnosed with Sotos Syndrome they may have some or most of these symptoms and that the degree in which these symptoms occur varies with each child.