Posted by Jim on 3/29/07

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I will try and keep this as brief as possible. This
involves our 12 year old daughter who had a horrific,
debilitating reaction to chemotherapy and a subsequent
misdiagnosis of associated damage to her stomach. I would
also like to clarify that we are not the kind of people
who are prone to frivolous litigation: Quite frankly, it
is generally inconsistance with our ethical, and
phylosophical beliefs. We have never even considered a
lawsuit until now. For us, litigation is something that
one persues under the most extreme circumstances:
Moveover, the idea of profiting expodentially off of
something like this is absolutely repulsive to us:
Nevertheless, we have suffered extreme finacial loss as a
result of this, and our daughter - who was a straight "A"
student and normal in every obvious way prior to November
of 2006, is now disabled and unable to walk, feed herself,
must wear a diaper, and cannot urinate without a catheder.
We are absoltely heartbroken, and have thought only of her
during the past months. We are now just beginning to
assess the financial impact this has had on our family.
Essentially, this is the story: Our daughter - prior to
November 2006, was a beautiful, vibrant 12 year old girl.
She was at the top of her class achedemically
(straight "A" principals list, and in the gifted and
talented program}. She was diagnosed with Lupus a couple
of yeas ago: However, her symptoms have been limited to
low white blood cell count {Chronic ITP}. The ITP was
being managed with steroids and periodic IVIG infusions:
However, it was continually "up and down", and required
frequent monitoring/treatment. We were approached last
fall by our daughters rheumatologist. She stated that she
wanted to try a drug called "Rituximab" (Rituxan) to try
and put our daughters ITP into long term remission. It was
explained to us that the treatment would be comprised of 4
infusions over - more or less - a 30 day period. The first
two infustions would be in the hospital, in a controlled
setting, due to the fact that clinical evidence had
historically shown that liklihood of a reaction, was
always during the first two infusions (and even then, the
risk was supposed to be very, very minimal) After that,
you were essentially "home free" - infusions #3 and #4
could be performed right in the doctors office as a very
rountine outpatient procedure (note: each infusion last
only about an hour and half). On the evening of the third
infusion, we drove our daughter to the doctors office. She
was in great spirits, just feeling her very best. She
settled in the chair with her music (I-Pod), and reading
material for what we all thought would be a simple
rounting procedure. About half way through the procedure,
she said she felt strange, and was a little nausiated, but
her vitals looked ok, so it was assumed that she was just
having a rountine, mild reaction to the Rituxan. On the
way home, she vomited, but felt better afterward. She
became inceasingly sick in the hours following the
infusion. Early the following morning, she was vomiting,
could not control her bowel, and was having trouble
walkkng. She was taken to the local hospital emergency
room and an initial diagnosis of serum sickness was made.
To make a long story short, she became increasingly sick,
and a subsequent, preliminary diagnosis of Guilliam Barre
Sydrome (GBS) was made. She spent three months in the ICU,
her body was going haywire. So many things were going
wrong. The critical care staff couldn't understand it.
Terrible things were happening that were not consistant
with GBS. Infections, unabated vomiting, heart problems,
etc. etc. .... Her life was in the balance. She was
incubated and put into continuous sedation. She spent
several weeks in the ICU at the local hospital, and was
finally air lifted to a large regional pediatric critical
care hospital. She spent another month in ICU, underwent a
tracheodomy, and underwent plasmaperhesus to treat the
GBS. The horrible, vomiting continued unabated all of this
time (two months) she was in abosolute agony vomiting bile
and blood .... and gagging nonstop ... there only time
this was not happening was when she was heavily sedated.
Finally, she was transferred to the progressive care unit
for another two months. The violent vomiting of bile/blood
continued unabated. Her primay care doctor's kept
insisting that it was ALL neurolgical. We witnessed
numerous arguments between the medical staff on how her
condition should be treated. They kept telling us they
were "trying to think out the box". Finally, a doctor who
had experience in South America recommended something
called "Paregoric" to treat her stomach {we later
discovered that this substance is essentially made up of
opium and alcohol. It was used extensively in the U.S.
around the turn of the century, but is - for all
practicall purposes - now considered obsolete in the U.S. .
So after three months in the hospital, we start dumping
this substance down our daughter's throat - and like
magic, the symptoms stop. After a couple of weeks, it is
determined that she is ready to be transferred to an acute
rehabilitation facility close to home (about 7 hours drive
from the major pediatric hospital in Houston). Out
daughter is essentially loaded into an ambulance with a
prescription for Paregoric, and dispatched for the 7 hour
ride to the rehab. hospital (she is still functionally
paralyzed from the neck down, but is beginning to have
some mussel movement) she feels sick and has some vomiting
on the trip, but not the violent vomiting episodes that we
were seeing before the paregoric. For the sake of brevity,
I will try and summarize the subsequent events. She
arrives at the rehab. Hospital. On the second day, she is
once again, experiencing violent vomiting - not even the
paregoric is working. The Gastro people {from the hospital
wing of the Rehab facility) arrive on the seen. They are
absolutely horrified - just mortified -that we are dumping
paregoric {Essentially Opium and Alcohol down the throat
of a little girl with clear indications of severe
gastroespophogal reflux and possible internal injury:
Moreover, they are simply astonished that a major, world
renowned, pediatric hospital would have prescribed such a
course. The surgeon spends about 30 minutes reading the
transfer report (the actual report from the major
pediatric hospital that our daughter was transferred from)
walks into the room, and anounces that immediate surgery
is required to fix the problem, and that this will
effectively rectify the problem. Essentially, we are told
that - regardless of possible neurological involvement -
there is clear and present physical damage, and if not
repaired, it will result in the disctruction of her
esophogas. We are ammazed. We ask the surgeon: How can it
be this simple" -- How can they have overlooked this at
one of the best pediatric critical care units in the
nations -- his response was "I am asking myself the same
question". He performs the surgery - it was supposed to
last about 2 hours -- but lingers on for about 4 hours ...
the surgeon walks out with a picture in his hand, and the
most astonished look on his face. He tells us this was the
worse case like this he has ever operated on. It turned
out that our duaghter had an enormous hole/perferaton in
her stomach that needed repaired before the reflux surgery
could even be performed {This was all missed at the major
pediatric hospital) Moreover, the paregoric was masking
her pain, and she was getting regular feeds {essentally,
we were all "fiddling wile Rome burned"}. In summary,
Allison has now been in the hospital close to 5 months.
She is recovering, but in alot of pain. G.I. is goin to
check her esophagas in about 8 weeks to make sure there is
not any scarring as a result of the unabated vomiting of
bile/blood over the past several months. She has sufferred
horribly. Again, we don't like litigation, but we don't
know what other recourse we have. Insurance has covered
most of the hospital bills {well over a half million
dollars to date-- and will, most likely approach a million
dollars before it is all over): Nevertheless, we major
uninsured expenses. We have breezed through our savings,
and ran up or credit cards - and we are now preparing to
rob our 401 K retirement account .. and my wife has had to
resign from a pretty decent federal job {our second
income, but nevertheless, income that we depended on to
maintain our standard of living). Our daughter is expected
to come home in a wheelchair and there is going to be alot
of expenses for all of the things she is going to need.
Unfortunately this situation has robbed us of the ability
give her the best care that we can provide when she is
finally at home in our care. Moreover, the lack of
resolution for her violent vomiting during the months at
the major pediatric hospital has had a very negligible
effect on her rehabilitation {we lost the golden months
immediately after the GBS bottomed out). We have to do
something here. I know this case is probably very complex.
Nevertheless, do we have something here. Product liability
for the Rituximab ??? Malpractice for the follow-up
treatment??? ... Whatever the case, what happened here is
just totally astonishing to us. We are absolutely
devastated by all of this -- but likewise, we are simply
astounded by this whole situation. Any
advice/recommedation would be most appreciated. ......
Signed: "Desparate in Texas"

Re: Chemotherapy Reaction followed by misdiagnosis, 7/04/07, by Shelley Gilkey RN, CLNC.

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