**autumngirl** — The Bump
Special Needs

**autumngirl**

Hi :)  I'm outside of Boston, but I got married in Wellfleet (old Knot screenname). 

Where is your DD's hemihypertrophy?  Ben's is in his leg.  How old is your DD, and when did you notice it?  Do you have a more specific diagnosis or just the hemihypertrophy?  Ben also has Horner's syndrome in his eyes (one pupil doesn't dilate as much as the other one).  So far, he doesn't have any developmental delays at all.  He's been seen by a pedi neurologist who said he was doing perfectly on that front.

Thanks for the info.  I don't know which doctor we are seeing yet.  Still waiting for them to call me.  

Re: **autumngirl**

  • DD's is in her right leg and upper arm. She may need a shoe lift at a later point.

     She was tested for Beckwith-weidemann (sp?) but it came back negative...

     She does have minor delays, just behind the curve but progressing. She only *barely* qualified for therapy on gross motor. In the past month her speech has taken off!

     good luck to you! let me know how you make out at Children's :)they are great!

  • oh. she was around 16 months when we noticed
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  • thanks!  i just got the call and we are going in march.  seems like a long time to wait, but i guess that's the first available.  hopefully they'll give us some clarity.  happy new year!
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