Scoliosis treatment questions - LONG 
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 Scoliosis treatment questions - LONG

BACKGROUND:
My daughter (Emily, 28 months) suffered profound brain damage as a result of
perinatal hypoxsia.  CAT scans shortly after birth and at 6 weeks indicate
the the cerebral cortex was essentially destroyed, and she suffered damage
to the cerebellum and even some underlying structures.  Her EEGs at two and
three days of age showed no measurable activity.  She was essentially
comatose until four weeks of age.  She suffers from cerebral palsy, seizure
disorder, chronic hypothermia and is microcephalic.

She has met no developmental milestones, although recently has smiled
occasionally.  She moves her limbs spontaneously but without purpose.  She
is able to take some nutrition by mouth, making use of the her "swallow
reflex", but is mostly fed via nasal-gastric tube.  She has a good{*filter*}reflex
but only fair cough.

She does have sleep-wake cycles, and has some sight and hearing as evidenced
by reflexive reactions to light and sound.  She also feels pain, and cries
when she is in pain, for example after receiving a shot, or when she develops
diaper rash.  She also seems to have a temper, and does not like like to
be manhandled, although she does seem to like to be cuddled and rocked.
Overall, she functions at the level of about a 2-4 week old newborn.

She currently resides at Providence Children's Nursing Center, a long term
pediatric skilled nursing facility here in Portland.  Our position has always
been that she should receive ordinary medical care and nutrition, but she
should not receive extraordinary care whose sole purpose is the prolong her
life.  Our focus has been to maintain her comfort.  She has always been under
Do Not Resusitate orders, starting from the time she was in Neonatal Intensive
Care.  (Comments on whether I wish to "have Emily's {*filter*} on my hands" will
be dealt with the contempt they deserve.)

She is on a number of medications, including Phenobarbitol, Depakane, Baclephen
(sp?), Valium, and occasional Chl{*filter*}Hydrate.  The first two are for seizure
control, the Baclephen and Valium for muscle relaxation, and the Chl{*filter*}Hydrate
is for extreme cases of irriatablily.

CURRENT PROBLEM:
Last year she developed scoliosis which has given her a "kink" in her spine.
Her bottom curve was measured last January at 49 degrees.  She was fitted
with a "clam-shell" body brace which is able to reduce the curvature to
34 degrees (February).  At her latest checkup (yesterday) her curve was
measured at 54 degrees (out of the brace).  I assume, since they did not
bother to X-ray her in the brace again, that they assume the brace is still
holding the curve to 34 degrees when it is on.

Emily does not like the brace.  She fusses and cries whenever it is put on,
although she does eventually settle down again after a while.  It is
difficult to tell whether she is actually in pain, or simply irritated at
being manhandled.  The brace is difficult to put on and position correctly.
Although her regular "Room Moms" (CNA's) are able to do this correctly,
Drilling a hole in the ventral side centered on her navel has helped in
positioning the brace correctly.

Emily's physical therapist at Providence is suggesting that we try going
without the brace for a few months and see what can be done with positioning
techniques.

The orthopedist states flatly that positioning techniques are ineffectual.
Furthermore, he predicts that without bracing her curvature will continue
to get worse until it hits ninety degrees, at which point her ribcage will
rest on her pelvic bone.  He predicts this will happen in about another year.
More seriously, the upper "recurve" will start to interfere with her respiratory
function sometime following that.  (She already has enough problems with
respiratory infections due to inactivity.  Last winter, for example, she
suffered two bouts of pneumonia, and one undiagnosed respiratory problem which
caused her to hyperventilate (120 - 140 breaths per minute!) for ten days
straight.)

ISSUES and QUESTIONS:

Emily has outgrown her current brace, and will need to be fitted for a new
one.  The first brace cost over $1200, which was covered by insurance, but we
would not like to spend a like sum again if it is not necessary.

A major question in our mind is just how comfortable the brace is.  As I stated
above, our primary concern is for her day-to-day comfort.  We have always felt
that Emily should not have to suffer time after time only to extend her life.
If the brace really is painful to her, then we may wish to forgo the brace,
even if doing so may cause her to succumb earlier than she would otherwise.
On the other hand, if it is a matter of short term irritation, then she should
probably continue using the brace.  (Assuming the orthopedist is correct in
his assessment.)

We would like to a get an honest second opinion, but unfortunately specialists
used to dealing with children like Emily are hard to come by.  In Portland
they are concentrated at the Child Development and Rehabilitation Center (CDRC),
P/O Portland's "Pill Hill" medical complex.  The doctor we have deal with
has been understanding about our concerns, and has basically said it is our
call.  He has not told us we MUST do anything.  (Life was easier when doctors
were dictators :-( )  He has given a reference to another doctor, but also at
CDRC, so is likely to have the same line.

There is somewhat of a turf war between the P/T and the doctors, and we're
caught in the middle.  The P/T works with the children daily, and says one
thing, and the doctor says differently.  If we go with the P/T's recommendation
and the doctor is right, we could be dealing with trying to brace back from
60 or 75 degrees in 6 months.

Can anybody give me some advice?

--
    Alan Jeddeloh      W:(503) 685-2991  H:(503) 292-9740
    Tektronix, Inc.; D/S 60-850; PO Box 1000; Wilsonville, OR 97070

    You can put the children to bed, but you can't make them sleep!



Mon, 15 May 1995 05:26:29 GMT
 Scoliosis treatment questions - LONG

Quote:

>BACKGROUND:
>My daughter (Emily, 28 months) suffered profound brain damage as a result of
>perinatal hypoxsia.  CAT scans shortly after birth and at 6 weeks indicate
>the the cerebral cortex was essentially destroyed, and she suffered damage
>to the cerebellum and even some underlying structures.  Her EEGs at two and
>three days of age showed no measurable activity.  She was essentially
>comatose until four weeks of age.  She suffers from cerebral palsy, seizure
>disorder, chronic hypothermia and is microcephalic.
>pediatric skilled nursing facility here in Portland.  Our position has always
>been that she should receive ordinary medical care and nutrition, but she
>should not receive extraordinary care whose sole purpose is the prolong her
>life.  Our focus has been to maintain her comfort.  She has always been under
>Emily does not like the brace.  She fusses and cries whenever it is put on,
>although she does eventually settle down again after a while.  It is
>If the brace really is painful to her, then we may wish to forgo the brace,
>even if doing so may cause her to succumb earlier than she would otherwise.
>On the other hand, if it is a matter of short term irritation, then she should
>probably continue using the brace.  (Assuming the orthopedist is correct in
>his assessment.)

>Can anybody give me some advice?

The orthopedist is correct about what will happen without the brace,
but such devices are only temporizing, since a child such as this
is not likely going to survive for very long no matter what measures
are taken.  I am in full agreement with you, that she should not be
made to suffer.  The medical measures are expensive and probably of
no ultimate benefit (unless one considers just surviving a benefit)
to the child and if they are causing more suffering (you are as
good a judge of that as anyone, really), I would not permit them.
You may also wish to get another opinion before proceding from
someone who has examined the child.

--
----------------------------------------------------------------------------
Gordon Banks  N3JXP      | "I have given you an argument; I am not obliged

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Fri, 19 May 1995 23:54:50 GMT
 
 [ 2 post ] 

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