Feeding
Issues & Feeding Tubes
| + | Speech
Therapy
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+ Marcy
Freed Electrical Stim | |
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+ Traditional Speech Therapy -
Not complete | |
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| + | G-Tubes | |
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+ Tube
or No Tube?? - Not complete | |
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+ Tube
or No Tube?? - Not complete | |
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For
Fun:
We found this on one of
the listserves! Please
pass it on.
You know you have a
child with a brain injury
when..........
You compare ER's instead
of grocery stores.
You compare your child's
oxygen saturation.
You view toys as
"therapy.'
You don't take a new day
for granted.
You teach your child HOW
to pull things out of the
cupboard, off the
bookcases, and that
feeding the dog from the
table is fun.
The clothes your infant
wore last fall still fit
her this fall.
Everything is an
educational opportunity
instead of just having
plain old fun.
You cheer instead of scold
when they blow bubbles in
their juice while sitting
at the dinner table
(that's speech therapy),
smear ketchup all over
their high chair (that's
OT), or throw their toys
(that's PT).
You also don't mind if
your child goes thru the
house tooting a tin
whistle.
You fired at least 3
pediatricians and can
teach your family doctor a
thing or two.
You have been told you are
"in denial" by
at least 3 medical or
therapy professionals.
This makes you laugh!
You have that incredible
sinking feeling that
you've forgotten SOMETHING
on those few days that you
don't have some sort of
appointment
somewhere!
You get irritated when
friends with healthy kids
complain about ONE
sleepless night when
they're child is ill!
Your vocabulary consists
of all the letters OT, PT,
SP, ASD, VSD, IFSP, etc.
You keep your appointment
at the specialist even
though a tropical storm is
raging because you just
want to get this one over
with.....you
waited 8 months to get
it.....and besides, no one
else will be there!
Fighting and wrestling
with siblings is PT.
Speech therapy occurs in
the tub with a sibling.
When potty training is
complete, you take out a
full-page public notice in
the Washington Post.
When the
Doctors/Specialist/Hospitals
etc. all know you by your
name without referring to
your chart.
You keep a daily growth
chart.
You calculate monthly
statistics for the number
of times your child
vomits, and did this for
more then one year.
You phone all your friends
when your child sits up
for the first time, at age
two.
With a big smile on your
face you tell a stranger
that your four year old
just started walking last
week.
Her medical file is two
inches and growing.
You have a new
belief.....that a
Speech
Therapy Marcy Freed's Electrical
Stim
Marcy is a speech
therapist at Rainbow Babies and Children's
Hospital in Cincinnati, OH. Marcy's direct
line is 216-844-7283. Marcy has been using
low voltage electrical stim to try to stimulate
and strengthen the muscles of the throat.
For some, this treatment has been a large
success. However, my belief is that it
works best on a select few. I have not
spoken to any parents who's children have
benefited. Most of the success stories have
been with adults. My guess is that adults
that have had the sensation of coordinated
swallow, but lost it due to cancer, stroke, etc.,
respond well to Marcy's treatment because in
effect it is a "jolt" back to what they
remember. For infants that never learned
coordinated swallowing it seems like it can make
matters worse. In our own experience, we
tried e-stim on Alissa at 4 months of age.
She had a very weak such swallow and was being
feed 100% via ng-tube. Marcy places several
electrodes on throat muscles with tape and
proceeded to turn on the juice. The muscles
contract in response to the current. For
Alissa, my guess is that the placement of the
electrodes were not ideal and simple contraction
of random muscles was not enough to produce a
coordinated swallow. What we saw was in
increase in saliva and for the first time in her
four months, she started to aspirate and
de-saturate. Marcy was not too concerned
about e-stim causing the symptoms but she conceded
that it did not appear that e-stim was helping
Alissa. Marcy felt the de-sats might be
caused by reflux. We stayed at Rainbow
for about three weeks try to get to the bottom of
why the de-stats started. After PH Probes,
video EEG's and other tests we still did not have
an answer. Luckily, after about two weeks
her sats came back to per e-stim levels (98-100%)
and all of the tests were negative. Then we
took Alissa home with an even weaker swallow and
wondering if had made a big mistake. In
reflection, we placed too much faith on a quick
cure. We should have stuck to the
traditional speech therapy approach and slowly and
consistently introduced her to more and more oral
stim. E-Stim may work for some but I would
wait until you have some foundation of swallowing
and then build on it with the e-stim.
We welcome other's
to add their experiences on e-stim for
swallowing. Either post them at our discussion
board or e-mail them directly to maplg@ourpostbox.com. |
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Treatment & Research
| + | Conductive
Education. | |
| + | Traditional
Therapy: PT, OT, etc. - not complete | |
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Conductive
Education
Here
is a discussion of the strengths of
Conductive Education Therapy.
C.E.
is a different way of
looking at a child or
person with motor disabilities. It doesn't
just look at the tight
calf muscle, for example,
but the whole child.
Rather than focusing on
what doesn't work, C.E.
looks at what the child
can do, and should strive
to try to do. The goals
are not unreasonable -
some kids never talk, or
stand independently. BUT
it gives each child the
opportunity to try and do
more.
From
a cost perspective,
Conductive Ed is about the
same cost as HBOT.
So it is not cheap.
However, several parents
have commented that they
have seen better results
with CE than with HBOT
alone. One center in
Canada, called the Ability
Camp offers both CE and
HBOT at the same
location.
People
who have used C.E. tends
to support it very
strongly. But, the same
can be said for many of
the treatment programs
that we come across here
at the BRIGHT
Foundation. It is
our opinion that the
results you get are proportional
to the effort you put
in. If you believe
and really work hard at
any treatment, if it is CE
or HBOT. You are
likely to see
results.
People
who have used C.E.,
comment on the changes
that they see in a short
time. They comment
that their kids are
excited to try new things,
and love to go to
"school" with
their buddies.
As
in all therapies, the therapist
(or in the case of CE the conductor) has a great
influence on how the
sessions turn out.
It is important to be sure that the
parent is very clear what
they like for their
child.
We
welcome other's
to add their experiences on CE. Either post them at our discussion
board or e-mail them directly to maplg@ourpostbox.com.
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