Re: Updaet on Jackson-Rheumatologist called in
- From: "Cindy" <cindynoxxxspaml57@xxxxxxxxxxxxxxxxxx>
- Date: Wed, 30 Apr 2008 08:30:00 -0500
Lots of prayers for Jackson..It is always hard to see a child suffer..
Hugs Cindy
<sweetpickleNO@xxxxxxxxxxxxxxx> wrote in message
news:b3a00$48164da5$45491df5$30996@xxxxxxxxxxxxxx
Sent: Monday, April 28, 2008 3:46 PM
Subject: update on Jackson
The doctor called us back today with some difficult news regarding
Jackson's
biopsy. Our neurologist said that the biopsy was not conclusive about
whether or not Jackson has an autoimmune disease. The active inflammation
cells that they normally look for were not present at all, but this could
be
due to the fact that Jackson was on steroids while in Vienna. Apparently
steroids remove the inflammation cells for a period of time and the
doctors
aren't sure exactly how long that length of time is. It is possible that
Jackson is still under the effect of the steroids and therefore the biopsy
does not serve as a good indicator for us at this time.
So, our doctor took Jackson's case to the new Pediatric Rheumatologist at
Children's Hospital who specializes in childhood autoimmune diseases. He
reviewed the biopsy, the blood work, and all of Jackson's files from
Vienna
and Birmingham. He feels like Jackson most likely has a mild case of an
autoimmune disease called Juvenile Dermatomyositis. This is a rare
disorder
in children that often affects both their skin and their muscles. He is
still NOT SURE that this is what Jackson has, and it is still possible
that
Jackson is just having a long recovery from a virus. Unfortunately, it is
more dangerous at this time to NOT treat a child for dermatomyositis than
it
is to treat them. There are some serious complications that can arise for
children with dermatomyositis who go untreated that we want to avoid if at
all possible.
So, beginning tomorrow Jackson will begin taking a dose of steroids twice
a
day. Usually this treatment lasts anywhere from 6 months to 1 year. In
some
cases I am told that children with dermatomyositis can actually recover
fully in 2-3 years time and go into complete remission. The Rheumatologist
at Children's Hospital will schedule Jackson for an appointment some time
next week, and then we will know more.
To prevent further muscle tightening and also to see if Jackson can return
to complete normal functioning, the doctor has also ordered physical
therapy. It is still possible that this is not dermatomyositis and that
Jackson could be healed completely with no more muscle tightness or pain
and
be able to come off of the steroids altogether. Hoping for the best, we
will continue doing all that we can to progress him and to improve his
function.
In light of this news and the new steroid medications, Jackson, Tanner and
I
will probably not be able to return to Romania. This will require regular
and frequent appointments with a rheumatologist to note Jackson's
condition
and progress. I am sure that you all know how much that breaks our hearts
because Romania is really our home now, full of new dear friends that we
will greatly miss. We will wait to see exactly what the Rheumatologist
says
next week before we decide what Robert needs to do with his job. Seeing
Jackson in person may give this doctor a fresh perspective and a new
prognosis, as is our hope. We are praying that God will direct our family
in exactly what His will is for us in these upcoming days and months.
So, I am just reminded that God's ways are so much higher than my own, and
He sees the bigger picture even when all that I see are closed doors. I
am
so thankful that what is impossible with man is possible with God. Please
do pray with us for a miracle and for complete healing for our son.
Love, Tracie & Robert Griggs
.
- References:
- Updaet on Jackson-Rheumatologist called in
- From: sweetpickleNO
- Updaet on Jackson-Rheumatologist called in
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