Sarah - Jane , sending hugs .....saying prayers.....Lisa __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the...
Hi all ! Just looking for a little input.....Awhile back , Emily had a kidney infection . Lately she seems to be having some bladder control issues . About...
Dear Lisa, from what I've been told, it's not uncommon for Sotos kids to have kidney problems. My Elise [now three] was born with a partial third kidney...
Hi all, I think these questions may have been touched upon lately, but I am hoping you can give some input. A couple of insurance questions... First, I just...
Hi! I have been trying to find out about the cancer risk in Soto's syndrome and just wanted to share this reply I got from the CancerHelp UK website where you...
Hi Lisa, I can't offer you any info on your incident however, I do remember my daughter Erica 12 having a lot of UTIs and having to take a lot of antibiotics...
I am the one who had the testing done on my self and my child. She had many other tests done to try an figure out why she had a delay and low tone. The...
Hi Paige, I would steer clear of the phrase "developmental delay" as someone who worked for and fought with insurance companies.that phrase implies it is not a...
A social worker is a good idea.however our Service Coordinator thru Early Intervention did not know a lot about what was available for help to families. I...
Thanks for the input Dania and Kristy ! Dania - I'm glad that Erica has been able to do without the anti-biotics for this long. Emily is prone to URIs and has...
Hi all ! Just thought I'd share......we haven't had much snow here this winter , but a couple of weeks ago we got about 3 inches . I posted a picture of Emily...
Girl, send some of that snow down our way. North Central Mississippi, where it never snows. LOL! Alex (age 9) has seen one snow in her lifetime and the...
Hi all, Um, I know this probably is not relevant to your question, but it reminded me... My daughter (Rachel 10 yrs, Sotos) Had stopped wetting the bed about...
Hi, thanks for your reply! Our infant program has been a good one, too. We also have the therapists come to our house and have transportation to the public...
My daughter had myoclonic seizures. They involve just a very fast jerking motion one or 2 times almost looking like a startle. They stoped after putting her...
Hi Pam, Thanks for the info! You mentioned how you have to argue with insurance companies. This may be a stupid question, but how exactly do you do that?...
I am trying to find parents, and learn more about Soto's Syndrome. From last Monday to today everything has been a total emotional train ride. At first we were...
Krista, Wow! This must be scary for you. I'm not sure how many of your questions I can answer but I'll try. Unless your child has underlying medical problems...
I would definitely have them list the Sotos not "developmentally delayed". I won my battle with the insurance company on covering Daniel's ST by proving that...
Welcome to the group! I have a Cole, too....he is my "typical" 8 yr. old (although sometimes he's more atypical than his sister!). Megan is almost 4 1/2 and...
Krista- I am amazed that you are getting a "diagnosis" prior to birth! Wow! You must have phenomenal doctors! My daughter, now 3, was diagnosed at about 18 ...
Those of you with children in school, you may be interested in viewing the changes that will take effect since the Individuals with Disabilities Education...
... Wit Kristopher we have always used a neurological impairment at birth resulting from sotos syndrome that will last throughout his life time, they may use...
I thought your post about Brielle was very encouraging. Is she in a regular preschool program? Cole also loves to draw and color, he draws a great snowman. I...
Brielle is in a speech intensive preschool program thru our public schools, so no it is not your regular preK program. Her sotos diagnosis is what qualified...
Thank you so much for the information. It just seems like there is not a whole lot out there, and where we will deliver Jack, Rainbow Babies in Cleveland, the...
Well you have made me feel so much more encouraged about everything. That is how I felt yesterday meeting with the genetic counselor that if in fact this is...
