[tri-med] Re: Baby Claire - Neu/Aud appt update

----- Original Message ----- 
From: "Debbie" <claire@xxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Wednesday, June 25, 2003 10:54 AM
Subject: [tri-med] Re: Baby Claire - Neu/Aud appt update


> I got the feeling that he didn't think it was worth the effort and he
> 'would' do it if we insisted...
> On the other hand, my husband felt that the neu intended to do an EEG in 2
> months, just not now since she is having no (visible) seizures.

While I am not denying that your gut instinct is right - its also not common
to do EEG's unless their is a specific indication. Seizures are not
universal amongst T-18'ers by any means. Even when we thought Alex may have
been having seizures we opted not to medicate because they were mild and
infrequent - the problems with the drugs would have caused more problems
than not. He did eventually have EEG's (immediately after apparent seizures)
but they never showed evidence of seizure activity even though the neuro
witnessed many of these "events" which even he thought were seizures.

I never respoinded to your earlier query but all babies stare and "talk" to
spots on ceilings where there appears to be nothing. We affectionately
referred to Alex doing this as talking to his angels - he still does it :-)

> He also said Claire didn't have good 'muscle tone' . I immediately went on
> the defense and told him that she has rolled over and is very strong.  I
> felt that he stereotyped her.

Low muscle tone is really common amongst all our kids. Alex has very poor
muscle tone. But don't confuse muscle tone with strength - they are two
totally different things. Alex is very strong but has very poor tone.

Strength is the ability to contract a muscle, either volitionally (because
we want to) or involuntary (because of a stimulus eg in babies when you
place your finger in their palm - its a reflex to grasp the finger)

Tone on the other hand is the "feel" of the muscle at rest. Testing tone is
very subjective and takes a lot of practice, even amongst those who are
trained so most parents have trouble understanding it. But a simple
explanation is - even when we are at total rest (eg asleep) our brains are
continually sending little teeny electrical impulses to our muscles to keep
them "ready" for action. Its totally out of our control. Sometimes when the
brain is wired differently these "resting" impulses get either too fast
which causes the muscle to be in a heightened state of readiness (also
called high tone, hypertonicity or spastic muscles) or sometimes they don't
happen as frequently as they do in typical kids (low tone, hypotonicity or
flaccid muscles). Most people, problems or not, have tone thats not
completely normal - depends on the tester sometimes though.

Low tone itself actually doesn't cause major issues if there is still good
voluntary control of the muscles. The problems are more subtle, eg fatigue
because they have to use more volitional muscle action to sit straight,
balance etc. Alex gets very tired sitting at a desk at school because of the
low tone. If left he ends up sprawling all over the desk. To help reduce the
fatigue we work really hard to have him in an ideal sitting position with
somewhere for him to rest his feet and arms. (Its one reason why trays on
wheelchairs are important, even if they don't use them to work on. They are
perfect to rest the forearms on to help hold them up) When he writes we use
a slope board so that it helps prop him up and he doesn't have to work so
hard at holding himself up.

Generally speaking high tone (spastic cerebal palsy) causes more problems
with function. People have to learn to over ride the automatic brain signals
and the constant involuntary contractions chew up a lot of calories (thats
why kids with CP tend to eat like horses but are usually stick thin)

Tone can also be variable in different parts of the body (eg you can have
high tone in the legs, but low tone in the trunk, high tone on the right
side of the body and normal on the left - or any combination you can think
of)

Alex was high tone as a baby, we broke that down with therapy and he was
left with residual low tone. A lot of therapy in the toddler years will
focus on tone and trying to normalise it for function. eg increasing tone in
the trunk so that they can sit more easily and use their hands etc)

> ** Has anyone heard of a dilated ventricle (in the brain).... it is
> something the drs saw in the prenatal u/s, but we haven't explored.

Alex has a mildly dilated left ventricle. It sounds scary but so long as it
doesn't increase it causes no problems.

Within the brain there are cavities (the ventricles) and these cavities are
filled with cerebrospinal fluid (CSF). This fluid circulates around the
brain and entire central nervous system and nourishes it. CSF is what they
draw out of the spine in a lumbar puncture to see whats going on in the
brain.

CSF is continually being made by the body, circulated and then absorbed back
by the body. Sometimes there is a problem with the circulation, eg a
blockage or narrowing in that circulation system. When this happens it sort
of slows the drainage down and there is a build up of pressure or fluid.
This can cause "dilation" or enlarging of the ventricles which are
essentially reservoirs for the fluid.

If its just slow, it causes no problem except this mild dilation of the
ventricle. If it totally blocks off the circulation then you have major
problems. The dilation will worsen or in other words the ventricles will
continue to fill with fluid and just get larger and larger. This in turn
puts pressure on the brain and will ultimately cause damage to the brain.
Note - it takes a LOT of pressure to cause this damage.

Your doctor is continually monitoring for this build up by measuring a
babies head every time they visit (ever wondered why they always measuring
babies heads?) They do it for all kids. If a babies head grows too fast or
becomes disproportional (remember though that babies heads are
proportionally larger than their bodies anyway) that alerts them to start
testing.

If there is a problem its called hydrocephelus (sp?), water on the brain or
"Big Head". To treat they can insert what is called a shunt, basically a
valve that allows the fluid to drain into a long tube. The end of the tube
is placed in the abdomen and the fluid drains into the gut and is reabsorbed
by the body.

So, the simple answer to your question is, mildly dilated ventricles are not
a major problem and a lot  of otherwise typical kids can have dilated
ventricles. So long as you have someone monitoring the circumference of
Claire's head it shouldn't be an issue. Hydrocephelus is not a common issue
in T-18.

The roots of true achievement lie in the will to become the best that you
can become.
-- Harold Taylor

Keep Looking For Rainbows!!
Karen, Mum to Alex (8 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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