[tri-med] Re: high pain tollerance?

Thanks for the info we need to know this- prepare our pediatrician- and
watch for signs of possible distress/pain.  I never knew about this and
T18 kids.  Wow.

Audry

>>> karens@xxxxxxxxxxxxxxxx 4/20/2007 4:15 PM >>>
----- Original Message ----- 
From: "Audry Nafziger"
> We have a 6 mo old and I was thinking she has a high pain tollerance
is
> this common for our trisomy babies????

It seems to be - especially T-18.
Alex has an abnormally high tolerance to pain. Its not that he doesn't
feel 
pain, because he does, so its not an absence of pain. He just feels it

differently to the rest of us.

They gave Alex morphine after he had heart surgery and they had him in
a 
medially induced coma for 24 hours. Over the first 12 hours they kept
upping 
the morphine telling me that he was in pain because his heart rate and
blood 
pressure kept getting faster / higher - normally an indication of pain.
It 
wasn't - its Alex's reaction to morphine (again atypical for the rest
of the 
population, it should depress HR & BP, but not for many kids with
T-18). 
Eventually I convinced the surgeon to stop the morphine and just give
him 
panadol (tylenol). He was fine, they brought him out of the coma, he
got up 
and started walking around. He should have been flat on his back and on

massive amounts of painkillers.

The same last year. Alex appeared to be unwell, (he kept having
Shapiro's 
crisis) but we couldn't work out what was wrong. Thankfully his
pediatrician 
has learnt to listen to me and admitted Alex to hospital. He had 
appendicitis / peritonitis. He had his appendix out and 4 hours later
got up 
out of bed and went to the toilet. He had two doses of panadol post 
surgery - that was it, and one of those doses was for my benefit not
because 
he asked for it.

It's been the same all his life - from his first abdominal surgery at 2

weeks of age (no pain relief then at all either).

Don't get me wrong, its good in some ways but poses many many problems.
For 
example Alex broke his ankle one time after a fall. He simply got up
and 
walked around on it. We didn't know it was broken until it swelled like
a 
balloon. And like his appendix - it makes it so hard to work out whats

wrong.

Because he is verbal I have asked him what pain feels like. He
describes it 
as a "tickle", like when I tickle him with a feather. My interpretation
of 
that is that he feels it, it just doesn't register in his brain as
pain. If 
he does seem to react to pain, its usually fear. eg he came off an
electric 
scooter the other week and cried etc (he had done some real damage) but
the 
reaction was to fear / shock rather than pain. When he complained of
pain 
whilst his injuries healed what he was really complaining about was the

feeling of tightness from his scabs when he bent his knees and elbows.

Actually that feeling of tightness, from scabs or swelling bothers him
more 
than pain does. He really cannot stand anything wrong with his skin. If

there is the slightest imperfection on his skin, eg chapped lips,
scabs, 
mosquito bites, even cuticles etc. He will pick and pick and pick at
them 
until they are a bloody mess.

Its only taken me 10 years to work out that I can stop the finger
picking by 
giving him a manicure 2 or 3 times a week and keep those cuticles off
his 
nails. The feeling of tightness of his cuticles on the nails is what
was 
driving him mad. Me - and probably the rest of the world, don't even
notice 
it. Trouble is he has done so much damage that I don't think his
fingers 
will ever really recover and he now has at least three warts on each
finger. 
But its great fun to give him manicures every other day :-))) If he was
a 
girl..........

Life consists not in holding good cards but in playing those you hold
well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens 

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



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

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