[tri-med] Re: Night sweats

That helps a lot...
We talk in F here, not Celsius.... a little conversion help?
So there's nothing we can do?  Just wait for her to outgrow it... I'll take 
her temps tonight and see if they are exceptionally low.
Also, she does have 'heat' radiating from her... would that come with a 
lower body temp and the sweat?  Her snoring doesn't sound like shallow 
breathing... can she be doing both?
I think my mind is slowly grasping the irony of the low body temps and the 
sweating... so cooling the room won't help a whole heap...?
Can a little 10lb baby take omegas?
So many questions... thanks for your patience!

Thanks again,
Debbie, mom to Baby Claire (full T18 and one year old)
http://www.debbwebb.com/Claire/



At 05:10 AM 3/30/2004 +1000, you wrote:
> > 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

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

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