Re: Chemotherapy Reaction followed by misdiagnosis

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Jim, I'm sorry, your post was just a little too long to read
the entire thing but I think I get the gist. Get all of
your daughter's medical records including the year before
the rituxin. then contact an attorney who does medical
malpractice. I do not recommend one of those that advertise
on TV or big in the paper, they are client mills. If the
first attorney is not interested in your case or does not
feel that you have one, try another reputible firm. be
prepared to litigate for at the very least months, more
likely years. Do not delay too long, while the statute of
limitations for the child is a year after they turn 18, for
you (and you are the ones with the financial loss right now)
it could be as short as two years from the injury. I hope
your daughter is doing well and wish you good luck.
On 3/29/07, Jim wrote:
> 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"