I agree to a point that there is risk in most
everything we do for our kids-but this one is a very
plain issue-and for us, even more plain than it has
been since our issue with it--this last week Krys has
struggled to live and breath with pneumonia in both
lungs--she is though to have asperated way too much
drainage when she had all 4 wisdom teeth out--and the
week would have been much easier for her if her once
good breathing capacity had not been reduced to a very
low breathing % rate due to one of these incidences
with myobloc--and to make it worse-NOW that we do know
this--when it happened our physitrist at the time said
it could have nothing to do with the shots-so several
days and other doctors passed before she even saw the
child--we had not agreed to myobloc--it had only been
on the market 19 days at the time-but was used without
our approval or knowledge until after the fact--she
later admitted she used way too much-she was TOLD the
dosage was the same as botox-but myobloc is much more
concentrated----so, not only do we have med issues--we
have physican issues--you just dont take someones word
for it when a childs life is in your hands--the rep
for myobloc was in the procedure---Miriam
--- my_special_son2 <my_special_son2@...> wrote:

> Miralax isn't approved for children either. There
> are lots of things
> used off-label. And every medicine has it's risks
> -- children have
> even died from Reye's syndrome from taking aspirin.
>
>
> It's all risk management -- does the outcome
> outweigh the risk?
>
> Personally I find these articles to be very vague.
> --- In cerebralpalsy@yahoogroups.com,
> "access2narnia"
> <access2narnia@...> wrote:
> >
> > Just saw this on CNN and found the article on
> Yahoo News!
> >
> > Very frightening!!! I had no idea the FDA had NOT
> even approved
> the
> > drug for use with children with CP, although
> Shriner's Hospital had
> > advised us against it for our son because the
> benefits were not
> > permanent, the bracing/casting required would make
> him more rather
> > than less disabled for periods of time, and
> because they said the
> > degree of improvement possible would diminish over
> time....we
> decided
> > against it ourselves for these reasons, but have
> always wondered as
> > so many MDs are using it.....
> >
> > FDA: Children treated with Botox died
> > By LAURAN NEERGAARD, AP Medical Writer 55 minutes
> ago
> > The popular anti-wrinkle drug Botox and a
> competitor Myobloc have
> > been linked to some deaths and other severe side
> effects suggestive
> > of botulism, the government warned doctors Friday.
> > The drugs use botulinum toxin, which blocks nerve
> impulses to
> > muscles, causing them to relax.
> > But in rare cases, the toxin may have spread
> beyond the injection
> > site to other parts of the body, resulting in such
> problems as
> > paralysis of respiratory muscles and difficulty
> swallowing, the
> Food
> > and Drug Administration said.
> > The FDA said the deaths were all among child
> patients, mostly those
> > with cerebral palsy treated for limb spasms, a
> condition the FDA
> has
> > never formally approved for the drugs' use in this
> country although
> > other countries have.
> > The problems may be caused by overdoses of the
> drugs, the FDA said.
> > Caroline Van Hove, a spokeswoman for Botox maker
> Allergan Inc.,
> said
> > children with cerebral palsy have far larger doses
> injected into
> > their leg muscles than the doses given adults
> seeking wrinkle care.
> > But the FDA warned that it also has reports of
> side effects in
> people
> > of all ages given the drugs for a variety of
> conditions.
> > Friday's warning came two weeks after the consumer
> advocacy group
> > Public Citizen petitioned the FDA to strengthen
> warnings to users
> of
> > Botox and Myobloc — citing 180 reports of U.S.
> patients suffering
> > fluid in the lungs, difficulty swallowing or
> pneumonia, including
> 16
> > deaths.
> > It is not the first warning about the potential
> for botulinum toxin
> > to spread after the drugs' injection; the
> products' labels say it
> can
> > happen.
> > Still, the FDA said Friday that its investigation
> into the side
> > effects is still in its early stages.
> > For now, the agency said doctors should warn all
> patients receiving
> a
> > botulinum toxin injection, whether for cosmetic
> purposes or as a
> > medical treatment, to seek immediate care if they
> experience
> > difficulty swallowing or breathing, slurred speech
> or muscle
> weakness.
> > That falls short of Public Citizen's request that
> the agency put a
> > black-box warning, the FDA's sternest, on the
> drugs' labels and
> > require that every patient receive a pamphlet
> outlining the risk
> > before every injection.
> > "Every doctor needs to notified about this, every
> patient needs to
> be
> > notified," said Public Citizen's Dr. Sidney Wolfe.
> "Children are
> > showing the way, unfortunately some dead
> children."
> > He said drug regulators in Britain and Germany
> last year required
> > sterner warnings be sent to every doctor in those
> countries.
> >
>
>
>




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