[blindkid] A cautionary tail

[Carol Castellano]

Whoah, that's quite a story, Sally.  I can easily believe it, tho, as 
someone who gets muscle-tightness headaches in my sinuses all the 
time!  Also, my husband had a constant headache for months which 
finally quieted after a doctor (probably the 5th or 6th he'd seen) 
recommended warm packs to relax the muscles.

Who came up with the possibility that it was muscle inflammation due 
to the twisting?  Glad you did not have to resort to electrodes!

Carol

At 04:04 PM 7/30/2009, you wrote:
>I've debated about sharing this information with the list as I 
>believe it reflects poorly on me but if I can spare anyone else this 
>problem, I guess it's worth it.
>
>Last year my son developed chronic headaches and missed the last 3 
>months of school.  Originally we thought that the headaches were due 
>to sinus infections.  After massive doses of antibiotics and trips 
>to the pediatrician, allergist and ENT failed to make any 
>difference, he was admitted to the hospital and placed under the 
>care of pediatric neurology. Finally he saw a pediatric headache 
>specialist who diagnosed him with occipital neuralgia.  It took 
>quite a while and several different tries at treatment modalities to 
>determine the appropriate treatment which turned out to be therapy 
>by a PhD physical therapist with special knowledge of headaches.  We 
>live in the Houston, TX area, in close proximity to a world class 
>medical center.  Our son was treated at one of the premier 
>children's hospitals in the country and it still took a long time to 
>get the proper treatment for him.  The neurosurgeon we saw wanted to 
>implant electrodes in David's head.  I was very pleased when David 
>asked the neurosurgeon why he wouldn't try something simpler first.
>
>Why do I share all this with the list?  Well, our best guess as to 
>the cause of the neuralgia is the seating arrangement the school 
>designed for our son. Last year he was placed at a table facing the 
>wall in order to provide him with easy access to outlets for his 
>electronic equipment.  In order to face the teacher, he had to turn 
>sideways.  This was an ergonomic nightmare for him. The constant 
>turning resulted in tight muscles and inflamed nerves.  I had 
>mentioned that I didn't like the placement but when they insisted, I 
>decided that there were other battles to fight.  I didn't realize 
>how damaging that seating arrangement could be.  We have made it 
>clear to the school that this seating situation must be changed and 
>they have agreed (without any admission that it was a problem to 
>begin with, of course).
>
>Seemingly little things make a difference.
>
>Sally Thomas
>
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Carol Castellano, President
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.nfb.org/nopbc