[blindkid] A cautionary tail

Sally Thomas seacknit at gmail.com
Fri Jul 31 21:48:37 UTC 2009

The pediatric headache specialist noticed that David wasn't holding his head 
up straight.  She asked why he held it that way and it sort of came to me in 
a flash of light that the twisting related to his twisting in his seat.  We 
went over everything he was doing and the seat position came up as the most 
likely cause.  The PT said that he is seeing more patients with headaches 
due to muscle tension.  People who sit at computers all day with their heads 
tilted down are also candidates for occipital neuralgia.  If it isn't 
treated and the ergonomic situation doesn't change, the inflammation can 
become difficult to treat.  The muscles and nerves create a feedback loop 
that just won't quit.

My husband wanted the school to hire ergonomics experts to make sure this 
kind of thing doesn't happen again.  While I applaud the sentiment, if they 
say there isn't money to teach kids to read and write, how are they going to 
work on the ergonomics of schools?

Sally Thomas
----- Original Message ----- 
From: "Carol Castellano" <carol_castellano at verizon.net>
To: "NFBnet Blind Kid Mailing List,(for parents of blind children)" 
<blindkid at nfbnet.org>
Sent: Friday, July 31, 2009 1:28 PM
Subject: Re: [blindkid] A cautionary tail

> 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
>>blindkid mailing list
>>blindkid at nfbnet.org
>>To unsubscribe, change your list options or get your account info for 
> Carol Castellano, President
> National Organization of Parents of Blind Children
> 973-377-0976
> carol_castellano at verizon.net
> www.nfb.org/nopbc
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