RND and Diva

It has been 2 or so years of asking what the tingling pain is that Diva experiences about 3 times per week. 

It started in her left leg and stayed there for a while and then happened in the right leg.  After a while more it migrated to the left arm and more recently she has had a painful burning in her head on the right side.  We've been to a pediatrician, dermatologist, pediatrician, rheumatologist, pediatrician, neurologist and back to the rheumatologist.  Also, since she was 5 she has been developing these tiny red dots (about the size of a pencil point) with a halo around them on her hand.  They then spread gradually up her entire arm and shoulder over the last 5 years.  That is why the pediatrician sent us to the dermatologist.  The dermatologist said they were hemangiomas and that if she had that many hemangioms on one arm perhaps there were hemangiomas internally that could be causing her tingling in the leg (back when it was only in the leg).  Pediatrician sent us to the rheumatologist.  He wasn't at all interested in the hemangiomas but more interested in the fact that her thigh muscle was weaker and smaller on the left than the right and sent her to PT.  Didn't work. Pediatrician advised us to watch it.  We watched it.  Until she cried from the pain in her head one Sunday afternoon.  I took her to the neurologist at Children's Hospital of Pittsburgh.  She had masive blood work and an MRI and MRA of her head and neck. All normal I'm told.  They sent us back to rheumatology and specified exactly which doctor to see. 

We had that appointment this week.  The outcome was that my Diva has something called Reflex Neurovascular Dystrohpy (RND) and that there are very few clinics that treat this.  Fortunately, we live in a city that has The Children's Institute.  I'm very familar with this place.  Boy Child has been here numerous times for OT for his sensory disorders and to see doctors there. So I'll be back there for Diva this time.

I'm also told that she may not even have hemangiomas now.  I have another appointment for Diva to find out if she has telangiectasia.  I'm not even going to link to it.  There are so many varieties of it out there on the web and a lot of weird pictures of them, none of them except for one look anything like what is on Diva. I'll leave this for another post after we see that specialist.

When Diva asked about the therapy involved to help with "the tingles" (as she calls them) and was told that she would be given a rigorous home exercise program to follow rigidly, her response was "cool - I need to lose some weight anyway".  Well, there you have it. 

1 comment:

MaggieK said...

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