[tri-med] Re: Night sweats

> Tell me more about the nervous system issues (or point me to a good
website
> if you have one, meanwhile I'll do a search)... I had no idea they would
be
> related... and never thought Claire would have that, but can't discount
> it!

Alex has a "funky" (for want of a better word) autonomic nervous system.
His has been diagnosed specifically as Shapiro's Syndrome or Spontaneous
Episodic Hypothermia with Hypohydrosis. I suspect after lurking and
listening that a lot of our kids have a very mild variant of this. (Dr Carey
agrees) In fact Shaprio's is often mild - Alex just likes to be different.

The bottom line is noone really knows for sure what causes these problems,
but they suspect that there is an episodic malfunction of the hypothalamus.

The hypothalamus is a small gland in the very centre of the brain just below
the corpus callosum. It's the "central controller" for the entire autonomic
nervous system. And the autonomic nervous system is what controls all those
bodily functions that happen without conscious control. eg sweating,
temperature regulation, blood pressure, sugar levels etc etc.

With Alex his hypothalamus works fine most of the time. But sometimes it
decides to output way too many brain chemicals called catecholamines. We
normally produce these - he just produces too many of the wrong ones.

Basically this causes his autonomic nervous system to shut down.

The first physical sign we often see is sweating, this lowers his body
temperature (sweating is of course how we cool down). If we check his vitals
along with the low body temperature he usually has a low blood pressure,
slow heart rate and slow, shallow respirations (hypopnea) which cause O2
dips - or central apneas.

Checking further we usually find that he has a lower than expected blood
sugar as well.

It is self limiting, that is it will stop - eventually. Sometimes it lasts a
few minutes, sometimes hours (most common), and with Alex sometimes days. As
I said Alex is extreme.

A lot of our kids seem to run at lower than normal temperatures and sweat -
its not a major problem. Can be scarey when you first notice it though.
Alex's neurologist and also Dr Sheth in PA suspect that it may be a
contributer to the central apneas we see in our kids too. We will probably
never know for sure on that one because the only way to test is to take
blood when its happening and then test them in the lab within 10 minutes and
even the trauma of taking blood can cause abnormal levels of these
chemicals - catch 22.

Simple way to check is to take her temperature when she is sweating. If its
in the normal range of 36.5 to 37F (axillary - not rectal) then autonomic
problems is unlikely. If its lower than 36.5C then its a possibility and
throw an extra blanket on. They are awake temps - take half a degree celsius
off for sleeping temps.

As to sleeping better - Alex always sleeps beautifully when he is having a
crisis - with him thats the problem. In deep sleep our ANS slows right down
which lowers our body temperature, heart rate, breathing etc etc. When our
body temperature is lower we go into a deeper sleep normally anyway (take
anyone's temperature when they are in the deepest part of sleep and its up
to a degree lower than normal) Thats why if you do relaxation you always
feel cold - we are slowing our autonomic nervous system down which drops our
temperature.

So if the ANS is slowing down you will go into a deeper sleep - hope that
makes sense.

As I said a lot of our kids have similar symptoms, but most outgrow them as
their nervous system matures. Just takes longer than the average baby.

Alex never outgrew it, but we hope that he will continue to improve. And he
has improved if I am honest, either that or I am better at ignoring them and
not getting stressed about it :-)

Alex's normal body temperature is rarely above 36.4C (the lowest end of
normal) and if he hits 37C we classify it as a low grade fever. But when he
is having a major crisis his temperature can drop to less than 32C, which is
deadly.

If you suspect that this may be the problem there is little that you can do
and to be honest there is little that you need to do. Dress her (which means
blankets as well) according to her body temperature, not the room
temperature. Sweating does not necessarily mean she is hot - it may mean
that her body is cooling itself down and she is cold (thats the hardest one
to get your head around!!)

If you are into trying to help her nervous system to mature try the Omega's
that we continually rave about. I use Efalex but thats no longer available
in the US. Jude, Fawna and others can give you the US equivalents.

Jude - did Kam stop sweating after you started the Omega's (just a curiosity
question)

Did that help?

>>She hasn't shown signs of reflux... none that I can see.

Neither did Alex, at least not typical signs - he was the dreaded silent
refluxer. No symptoms, not even any crying, but major dangerous reflux was
happening anyway.

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

Other related posts: