Re: any similar case
Jo Ellen Finkelstein (ghellen(AT)ninenet.com)
Wed, 17 Sep 1997 14:52:00 -0500
BAKERJU(AT)wpmail.onc.jhu.edu wrote:
>
> ** Reply Requested When Convenient **
> My daughter was diagnosed with Transverse Myelitis on 6/9/97 at the
> age of 6. She is now 7. She was paralyzed right below her chest but it
> has moved down to T9 and has stayed there. Her prognosis is that she
> will be paralyzed for life because of the rapid onset of the myelitis. She
> has a lot of tone in both legs which causes spastic jerks and tightness in
> her legs. She is currently on Baclofen and Valium for this. She does
> self-cathing but about a month ago she started becoming incontinent
> between cathing. About two weeks ago she started to tell me that she
> had to urinate and actually did. She saw the Urologist and he has
> scheduled a test called a CMG for this Thursday. I would like to hear
> from someone who has been through this.Mr. Baker,
Please don't take one diagnosis as law, yes she may have TM
BUT...it may not mean that she is paralysed for life. Your daughter may
make some very good recovery. Just because it was a rapid onset doesn't
mean there isn't hope, I have progressed to the point that they are
going to try to get me up to the parallel bars to work on walking. She
may have a long road ahead but help her to keep motivated. The younger
TM patients seem to have a better chance of recovery, perhaps because
their nervous systems are still developing alternate pathways that us
older folks don't have. I was in the nursing field and I know that
Doctors may THINK they are the final word but they often don't know for
sure what's up (I went through several diagnosis before they determined
what I have.) They sometimes don't take into consideration the human
will and what God can do for us. In the mean time help your daughter by
encouraging any signs of independance she shows, and don't let her get
too dependant on other people to do everything for her. When I was in
the hospital I surprised my nurses and aides by making my own bed
(usually) and doing my own laundry (they had a washer and dryer
available for our use). I would also run errands (getting the newspaper
etc. at the gift shop) for some of the people on the floor who couldn't
do it for themselves. If you let her get away with having everything
done for her (and she may try, lots of kids do) she may start to sound
like the brat no one wants around! DON"T GIVE UP!!!
I will keep you in my prayers Jo Ellen Finkelstein