Re: Devics
THous65004(AT)aol.com
Tue, 12 Jan 1999 12:24:09 EST
I would like to introduce myself, my name is Stacey, I have been a lurker for
awhile now, and I have received a great deal of information and support from
all of you, even though you did not know it. My 17 yr old daughter was
diagnosed in April 98 with TM, and in Oct the doctors said they thought she
had Devics. I was prompted to write after I read the post from Lynne Barnes
about Devics. I will give you a run down on Tera's history ( I will try to
keep it brief). In early 98, she had an extremely hectic schedule(junior in
high school,had a job, swim team, cheerleader, powder puff football) she got
run down and had the flu in late March. In April she vacationed with friends
where she began experiencing chest pain, shortness of breath. They took her
to Dr. there, he diagnosed as pleurisy, which I understand is a painful lung
infection. When she returned home on a Saturday, she was in extreme pain in
her chest & back. On Monday I took her to our Doctor, he admitted her to
hospital for tests. After running many tests, they did an MRI on Wed, (by this
time, she was experiencing weak legs) The next day, she was transferred to
UCSF and was totally paralyzed from the chest down (T4). MRI there showed her
entire spine inflamed.Her treatment was 5 days of Solumedrol and diagnosed as
Acute Disseminated Transverse Myelitis. After 4 weeks in hospital and intense
PT, she came home in a wheelchair, but was able to walk with walker. She
continued PT at home 3 times a week and graduated to crutches, then on her own
slowly. She had recovered to about 80% when she had another relapse, not
totally paralyzed, but very weak legs, returned to hospital for 5 days
Solumedrol and PT again. She has had 3 relapses since the initial episode,
each a bit less severe than the previous. The MRI's show the active lesions in
the same spinal area, just smaller each time. The relapses come when she gets
down to a low dose of Prednisone, 10 mg or so. This last time, the taper has
been much slower, so she is on 20 now . As we get closer to the lower doses,
we take one day at a time. Our neurologist is a specialist at the MS clinic
at UCSF, and is very supportive. Even with this illness, I thank God for the
many blessings I have. We have good insurance, I have a very understanding
employer that allows me to be at the hospital with Tera, and a very supportive
family. Most of all I thank God that he has given Tera such a great positive
spirit. Her life will never be the same, she had been a promising athlete but
she never looks back, only forward. She is truly an inspiration to me. I
promise, in the future my posts will be short. Thank you all for being here
and doing what you do! and Thank you Lynne for responding to my questions.
Stacey (in foggy California.)