Children with Soto's Syndrome

iVillage Member
Registered: 10-29-2003
Children with Soto's Syndrome
7
Wed, 10-29-2003 - 1:53pm
I'm new here I am not sure how to start! I'm looking for family members of Soto's Syndrome children. If any one could please help me I would be greatful

iVillage Member
Registered: 03-21-2003
Thu, 10-30-2003 - 7:21pm

Hello,


Welcome to the board.I don't know of any one that has that.But maybe one of the ladies on here do.


Again welcome.


Julie

 

Avatar for beammeup2
iVillage Member
Registered: 07-02-2003
Fri, 12-05-2003 - 12:26am
My daughter has Sotos Syndrome. She is 12 years old.
iVillage Member
Registered: 10-29-2003
Thu, 01-15-2004 - 12:34am
please share whatever you can with me about Soto's. HOw old was your daughter when she was diagnosed and what is her status now? please share with me.
Avatar for beammeup2
iVillage Member
Registered: 07-02-2003
Mon, 06-21-2004 - 10:51pm
Sorry I am so slow responding.

My daughter had knee surgery in April. Time has flown and my job has kept me hopping.

My daughter was around 2 1/2 or 3 years when she was diagnosed. She has Sotos or is Sotos like. She has speech motor and cognitive delays. She has always recieved speech, physical and occupational therapies.

She will be 13 years this summer. (Groan, I don't think I am ready for a teenager yet.) She is 5'9" or 5'10". When we had the surgery they said she is pretty much through growing. She may get a little taller.

She is mainstreamed at school most of the time. Most of her assignments are modified. She does go to Special Ed. for reading and math. She reads solidly on a 3rd grade level and can read on a 4th grade level with help. She has just mastered simple addition and subtraction this year. She also finally is understanding money. Touch math has really helped her, even with money.

Her biggest issues are social. Things like wiping her face and chewing with her mouth closed are still a struggle. (I have nagged both my kids forever on these things.) Now the differences betwwen her peers and her really show. She is probably at about 7-8 year old level.

Boy, I don't know what else to tell you. Please ask anything you want. I hope this helps. I will check back more often!

iVillage Member
Registered: 03-19-2003
Tue, 06-22-2004 - 7:32am

Thanks so much for responding and sharing information!

 


 



Avatar for beammeup2
iVillage Member
Registered: 07-02-2003
Tue, 06-22-2004 - 10:22pm
Jan,

Thank you for responding! My daughter is doing very well after her surgery. She fell down last summer and dislocated her kneecap. It never healed properly. Her recovery is quite remarkable after the long time to get it fixed and the original struggle to get her up and using it.

You are quite right she is a special young lady. I really wouldn't change one thing about her expect maybe the teenager thing! LOL ;O) She is a deeply caring and funny girl. She has taught me so much about being determined and never giving up. She has a very sunny personality.

I am blessed to have her!

E

iVillage Member
Registered: 03-19-2003
Wed, 06-23-2004 - 7:49am

E, teens do bring their own set of challenges!