[tri-med] Re: wanted to share - medication information

----- Original Message ----- 
From: "Nicole Jones"
> It can have serious side effects on the CNS, one of which is a
> disease that causes symptoms similar to Parkinson's Disease.  He said
> that it is pretty rare,

Hi Nicole,
It is fairly rare, but I am one of the people who can't take Reglan because
I have had this reaction to it. The really strange thing about it is that I
took it for years for migraines with no problem, then just out of the blue I
had the "extra occular gyric crisis" or whatever its called. My best
description of it is that it looks like a seizure but it isnt because you
are totally aware of what is happening but have absolutely no control. You
just shake uncontrollably from head to toe, your eyes roll back and then you
are left with tardive dyskenesia (the parkinson type symptoms). Once the
meds are stopped though and out of your system the symptoms go away. They
arent permanent unless you ignore them and keep taking the reglan. In which
case you can be left with permanent tardive dyskenesia.

It happened a few times before anyone put 2 and 2 together that it was the
Maxalon (reglan) that was causing it. (I didnt take Regland every day just
now and again) Even odder is that I could take the Reglan again after one of
these crisis and have no problem but every now and again it would happen
again.

I thought that was bizarre but the neurologist said no - its pretty common
for it to happen that way, when it happens. It is pretty uncommon which is
why it took someone so long to realise what was happening. In fact they only
realised when I had Reglan as a pre-anaesthetic drug. Had the reaction and
ended up in ICU. So much for a day stay procedure.

Anyway, because I have had the reaction I have paid note to our kids having
any reactions while on Reglan. So far I have only ever heard of two children
with T-18 having this particular reaction, which given the numbers of kids
on it makes it pretty "average".So they dont think they are really at any
extra risk (think being the operative word). Thats why I am so keen to get
the TRIS project - reactions to the common drugs and even what drugs are
being used for what and their success is what TRIS is all about.

But that our kids are at no extra risk from Reglan seems to be Dr Carey's
take on it. Plus the drugs to speed up gastric motility (which is what
Reglan does) are pretty scarce. The only other one thats regularly used is
erythromicin and that has its own issues (Alex cant take it because of the
undesirable side effects, but we have only tried it as an antibiotic)

It always pays to keep an eye on the side effects of any drug and to
research the manufacturers warnings and side effects yourself. I dont trust
anyone to tell me what the contraindications are anymore. I like to know how
a drug works and what "might" happen, even if it doesnt.

Alex never gets any medication, or natural therapy without it being fully
researched. Even then we take our own precautions. eg No new medication is
started on a weekday when he is at school. (if there is going to be a
problem I would rather be around in person)
I never start them when I am tired. And if the side effects can be dangerous
we do a trial in hospital. Alex often goes into hospital for a day stay just
to start a new drug. Even some vaccinations we have done in hospital to be
safe. (eg pertussis or the whooping cough vaccine) We do that because Alex
has so many paradoxical reactions to drugs. The most obvious one is to
narcotics.

When most people get narcotics it depresses their autonomic functions eg
slow down breathing, heart rate, drop your blood pressure etc. If Alex has
morphine or any narcotic it does the opposite, that is increases his heart
rate, makes him hyperventilate and get high blood pressure etc. Again it
took us a while to work it out.

After Alex had his pacemaker implanted they had him on a morphine drip to
keep him out of it and out of pain (they had had to break a couple of ribs).
Of course he had "his" normal reaction and the doctor in ICU thought it
meant he was in pain and kept increasing the morphine. The more he increased
the morphine the worse he got. Vicious cycle and the opposite of what anyone
would expect.

Eventually I got assertive and said just cut the morphine and he will be
better - they looked at me like I was an idiot. We suffered all night like
that. In the morning when the cardiologist came round and saw what was
happening he listened to me and said lets try it - so they did. Immediately
all his vitals started to come back to normal and he rested a lot more
comfortably. So instead of days of narcotics he ended up getting no pain
relief (and showed no signs of being in pain - in fact he was up and running
around 12 hours after stopping the morphine, which given that he had just
spent 6 hours on an operating table having heart surgery amazed everyone)

But then Alex is a very odd child at times. Common drugs that one would
consider safe he has odd reactions too. I am even really reluctant to give
him paracetamol (tylenol) because doctors really dont know how it works,
except to say that it probably acts on the CNS. With Alex it will reduce a
fever, but all too frequently it will make his temp go down too far. Alex
has atropine eyedrops for eye exams and they normally wear off in an hour or
two. Alex likes to be different. One pupil usually returns to normal within
a few hours - the other took 3 days!!! No one could explain that to me. I
could understand both but not one.

Alex has taught me to never take anything for granted, not even what I would
never have thought twice about in the past with my girls. But thats life on
the roller coaster :-)) I just try real hard not to be paranoid.

I have not lost my mind - it's backed up on disk somewhere.
-- Unknown

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (9 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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