[blindkid] A cautionary tail

dan sturgill sturgilldan at yahoo.com
Fri Jul 31 16:05:38 UTC 2009

Hi Sally and family..

W OW...What we learn each day. David  is such a trooper and to think this could possibily have been averted. Thanks for sharing this, Kayla has been put into the same situations in the past. Now i will be aware to see this does not happen again.

GodBless you all Sally and Kayla says hi. She will be back Aug. the 8th. I miss  her so much.

Dan and Kayla

From: Sally Thomas <seacknit at gmail.com>
To: "NFBnet Blind Kid Mailing List, (for parents of blind children)" <blindkid at nfbnet.org>
Sent: Thursday, July 30, 2009 3:04:48 PM
Subject: [blindkid] A cautionary tail

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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