Comorbid conditions with Sotos Syndrome
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HikingStick
Oct 25, 2010, 10:23:47 AM10/25/10
to Sotos Syndrome Families (MN)
First of all, sorry to everyone for dropping the ball on the picnic
this year. It has been a crazy one for us (and me in particular).
I'm writing today because our son has a new comorbid condition to add
to his list: scoliosis. A few months ago I noticed that his pectoral
(chest) muscles were very different in size. Because of that, I asked
my wife to make sure his specialists looked him over for other dis-
symetry issues at his next set of appointments. As a result, they
found out his spine has a 26-degree deviation (a side-to-side "S"
curve), and that means he's going to be wearing a back brace 24 hours
a day until he stops growing (not his overgrowth period, but when he
completely stops growing--between 18 and 23). It will only be removed
when he bathes or goes swimming.
What other comorbid symptoms are you facing? Is it just me, or is it
that when we just start to feel that things are looking up, we find
out there is some other related problem?
this year. It has been a crazy one for us (and me in particular).
I'm writing today because our son has a new comorbid condition to add
to his list: scoliosis. A few months ago I noticed that his pectoral
(chest) muscles were very different in size. Because of that, I asked
my wife to make sure his specialists looked him over for other dis-
symetry issues at his next set of appointments. As a result, they
found out his spine has a 26-degree deviation (a side-to-side "S"
curve), and that means he's going to be wearing a back brace 24 hours
a day until he stops growing (not his overgrowth period, but when he
completely stops growing--between 18 and 23). It will only be removed
when he bathes or goes swimming.
What other comorbid symptoms are you facing? Is it just me, or is it
that when we just start to feel that things are looking up, we find
out there is some other related problem?
Lisa Duncan
Oct 27, 2010, 2:07:53 PM10/27/10
to sotos-syndrom...@googlegroups.com
No problem on the picnic. We'll make it work one of these years. This was a very busy summer for us too, but I'm coming to realize that life is just busy.
So sorry to hear about Gideon's scoliosis diagnosis. Thankfully you clued into it early as I'm guessing that will help him in the long run. Just a bummer that he will need to wear a back brace 24/7. I think that is the thing with Sotos Syndrome, there are just so many aspects that can affect our kids, that you have to keep your eye on everything.
Right now Gracie (3 yrs old) seems to be doing very well. Our biggest challenge is keeping her seizure meds at the right levels with her rapid growth. Just 2 lbs can mean a med increase, so we have to watch her weight very carefully. As long as we stay on top of it, we are able to keep the seizures away. We are blessed to have an awesome neurologist to work with.
Lisa
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