My daughter Lisa was diagnosed last year 6/9/97 at the age of 6. She turned 7 in August of 1997 and will be 8 this August. She was and currently is paralized from her belly button and down. She is a T9. She does not have control over her bowels and bladder. She caths every 3 to 4 hours and we do a bowel profram at night using Ducolax. We started using RGO's which is reciprocating gait orthotics around November 1997. It is a brace that starts from the waist and goes down to the feet. With this brace she can walk by manuevering her hips and using a walker. It is very hard to do but is good for her because it puts weight on her legs and keeps her from getting osteoporosis. Her main problem is her weight because she is over weight. As far as vitamins, I give Lisa Vitamin C to fight off infections and viruses and a Calcium supplement to prevent osteoporosis. This was suggested by the Nutritionist. I also have her on a low fat, low sodium diet. As far as fatigue, I try to have
her go to bed early, expecially when she is going to school. Of course school is out for vacation now, so I will be a little lenient. The more exercise you can get your daughter to do, the better. I ordered a seat- a - robics tape for Lisa which she does in the wheelchair. We also joined a place called The League for The Handicapped. It has a heated pool, handicapped rooms and showers, and a fitness room that is wheelchair accessible. The swimming helps the spascity in her legs and also for weight control. Please feel free to email me at any time. Hope this information helped.
Judy Baker
>>> "Christine Cox" <ccox(AT)castanoplc.com> 06/17 2:44 PM >>>
Forwarded message:
From: Self <Single-user mode>
To: tmic-list(AT)eskimo.com
Subject: kids
Reply-to: ccox(AT)castanoplc.com
Date: Wed, 17 Jun 1998 11:43:23
I would be interested to recieve mail from anyone with a child under
15 with transverse myelitis. My daughter, Claire, is 10 and was
struck with acute tm at the end of October. It left her paralyzed
from the waist down. She has had no return of feeling, and has no
independent bowel or bladder function. I am interested in learning
about vitamin therapy, if any, and also about immunology. Has anyone
had any experience with an immunologist, since this is an autoimmune
disease? Also, fatigue. How can that be counteracted? She will be
in a very academically competitive school in the fall, and I am
concerned about her 'keeping up'. I am also concerened about pre-
adolescent sexuality in children with this sort of condition. Also,
what about RFO's? Any insight?
Christine Cox