Looking to meet other families in Minnesota

[jenny32]

We have a 4 year old daughter Mackenzie who was diagnosed with Soto’s
Syndrome at the age of 1. She has had lots of medical issues since
day 1 in regards to her head shape, curvature in the spine, larger
body and her lack of balance not to mention development delays. We
have been to several specialist that include, Gillette’s for
Craniosynotosis, Children’s Heart Clinic for her heart murmur, she has
had several cat scans and MRI’s of her brain. She has been to capable
kids and we have had a physical therapist and an occupational
therapist come to our home. She has had surgery to remove a teratoma
from her tailbone that she was born with. Finally we brought her to a
Genetist that finally diagnosed her with Soto’s Syndrome after running
some blood tests.


Like many other families we were in shock, our other daughter was
healthy and we just did not know how this could have happened. We
have struggled over the past couple of years with her having severe
anger in which she will slap her face, bang her head on the wall or
just scream. On the other end, she can be so incredibly loving and in
need of constant attention and routine activities. We are extremely
concerned with her going to school or how other people can relate to
her. My husband and I would love to meet other families that can
understand the struggles of raising a child with Soto’s Syndrome but
also offer some advice for the future and what to expect.



I would love to hear about you and your story, please feel free to
call me anytime or just send an email to jen...@generalparts.com,
952-217-4782.



Thank you so much for your understanding and remember you are great
parents!!

[HikingStick]

Thanks for posting to the group. My wife and I, too, are hoping to
meet with other Minnesota families that are dealing with Sotos
Syndrome. I wish we had more we could share, but our boy with Sotos
will only turn two years of age next month (though he is already as
tall as his three-and-a-half year old sister and almost as tall as his
five year old brother). As per my email to you, perhaps our families
may get together at a park sometime after the weather warms. Does
your daughter tend to get very cold very easily? We've found that to
be true of our son.

[Jenny Moretter]

She does get cold very easily. I have noticed that as she gets older she has to have a strict routine otherwise she feels lost. She watches only certain shows several times a day, wants to only wear certain clothes, eat certain foods, etc. As your son gets older you may see this pattern take place. It is definitely a struggle for both the child and the parents, I wish more people knew about the syndrome so that they can fully understand her and not look at her differently.

[HikingStick]

I guess I'd be satisfied if they looked at our son differently, but
with compassion rather than disdain or judgment. He is clearly
different, and his looks stand out to the eye. I can understand when
people stare. It's when they make assumptions that I'm most bothered.