Monday, May 07, 2007

Success!! Soto's diagnosis confirmed.

Well, much to my surprise, the doctor came through. His latest letter spelled it out. Despite normal NSD1 scan, she has Sotos Sundrome. He spells it out in his second letter that genetics are NOT conclusive, so his diagnosis stands.

Yay! Talked to her Early Intervention physical therapist, HF, today. HF said she was not at all surprised to hear that Anneliese has an overgrowth syndrome. It was awesome to talk to a professional who was conversant with the disorder. Most of our family and friends do not understand what Sotos is, and it is hard to explain. But, frankly, the diagnosis is for the medical and insurance communities, as LeeLee is still the little ray of sunshine she was before the arrival of Dr I's letter.

We are starting to head into stormier weather with her moods. Unfortunately, she is getting more frustrated at not getting her way--dressing, food choices, being read to, watching TV, etc--we get the tantrum to end all. We are beginning to wonder if this is just a three year old phase (like Sophia had as well) or if we are entering phase 2 with Anneliese, now that she is asserting her autonomy.

Who can say?


Jill said...

I imagine it must be bittersweet to get the diagnosis. At best a label can steer a child toward what he or she will need to thrive, wishing that for your gorgeous little one.

daisy said...

i am Daisy 24year old f from California usa i was diagnosed with sotos 10 years ago im obviousli diferen from everyone else. do u know anything on sotos syndrome?