Questions to me Answered by me!
April
2002:
Q:
The
acidophilus
-
I
have
some
of
this
but
have
not
started
Aschdon
on
it
as
of
yet
because
well
I
don't
know
how
much
to
give
him.
Also
starting
to
get
his
vivonex
going
I
wasn't
sure
if
it
was
good
to
have
that
at
the
same
time.
A:
You
may
have
to
play
some
with
the
dosage
to
get
it
just
right
for
your
child.
You
are
right
you
don't
want
to
start
two
changes
(whether
it
be
a
new
supplement
or
a
different
dosage)
at
the
same
time.
Because
if
your
child
encounters
any
problems
you
want
to
know
which
supplement
caused
the
problem
and
which
supplement
you
will
need
to
adjust
or
maybe
even
remove
from
his
plan.
There
are
no
set
dosages
for
most
of
these
supplements
that
we
add
because
the
children's
needs
differ
so
much.
But
what
I
have
learned
about
acidophilus
is
that
1.)
It
aids
in
digestion
2.)
It
helps
with
excess
secretions
3.)
If
too
high
of
a
dosage
is
given
then
it
can
cause
diarrhea
and
cramping.
The
instructions
on
the
back
of
Crystal's
label
says
¼
of
a
teaspoon
for
ages
4
and
up.
Well
Crystal
is
almost
3
and
her
doctor
still
wants
this
to
be
split
in
half.
Also
make
sure
that
you
are
using
a
milk
free
acidophilus.
The
brand
I
use
is
stored
in
the
refrigerator
at
the
health
food
store.
Q:
Bracing
for
ankles: I
would
love
some
of
the
equipment
that
I
saw
available.
Aschdon
does
have
AFOs
but
they
told
us
to
only
have
them
on
him
when
we
go
anywhere.
I
can
see
in
a
few
sites
that
that
isn't
the
case.
I
am
not
sure
on
how
to
approach
the
therapist
with
this.
A: I see in Crystal that she is so weak that she was losing her arch, curling her toes, and her ankles were everting. I believe that it causes her great pain if she was to stand without braces, and I do not allow her to do this. I don't even allow her to stand in her "MDA rejects", because they don't properly support her ankle, arch or toes. Basically, Crystal wears her "MDA rejects" as shoes all throughout the day, and if she is having problems with plantar flexion, then even at night. But when she does any standing or assistive walking I change her into her SMOs, which is what her other braces are actually called. We went Tuesday to have her fitted for some DAFOs, which are basically the same as SMOs, but go half way up the calf and are supposed to help with preventing plantar flexion as well.
But you also told me that Aschdon has a dislocated hip. Please forgive me if you have already done this, but I think you need to have him seen by an orthopedic surgeon to see if he can weight bear on his hip like it is. Your therapist may be right about you causing more harm than good by having him stand on it. But it would still be important to stretch and massage the knees because even though your child may not use his legs contractures are painful and very uncomfortable, in addition, many of us are still praying for a cure and we want to save as many of our child's abilities as possible because the likelihood that any progress will be made on correcting any damage that is already done is very little.
Q:
Spinal
stretching:
He
has
well
what
I
call
a
turtle
shell.
Not
sure
what
the
name
for
it
is.
We
were
told
to
only
have
him
in
it
for
about
30
minutes
a
day.
To
me
I
am
a
difference
in
his
spine
now
and
it
is
not
for
the
better.
I
know
there
has
got
to
be
something
out
there
for
stretching
and
such
and
maybe
longer
in
the
shell?
A:
I
am
not
sure
what
this
turtle
shell
is
used
for.
Scoliosis?
I
have
a
lot
of
info
about
that
on
Crystal's
site
as
well.
I
have
nothing
to
give
you
from
my
own
experience
because
that
is
something
I
am
actually
working
on
right
now.
Crystal's
team
does
not
believe
she
has
scoliosis
because
it
is
not
fixed.
She
only
has
a
curve
because
of
her
muscle
weakness
indicating
she
is
just
slouching.
So
I
am
in
the
process
of
preparing
enough
convincing
information
to
present
to
her
family
doctor
and
then
with
his
recommendation
I
can
show
this
to
her
orthopedic
surgeon
as
well.
I
believe
the
info
on
Scoliosis
is
on
the
"Directory"
page
of
Crystal's
site
or
if
I
didn't
link
it
all
to
that
page
it
would
be
under
her
"Physical
Therapy"
page.
I
also
have
some
email
responses
that
I
will
be
adding
to
the
site
soon,
so
keep
an
eye
out
for
them.
Q:
Nutrition:
What
kinds
of
food
do
you
feed
her?
I
am
working
on
getting
Aschdon
off
of
the
dairy
and
meat
but
now
I
am
at
a
loss
for
what
to
feed
him.
A: This is something that you are going to have to do on your own. I can give you suggestions, but these are things I have had to come up with from Crystal's interests. When Crystal first started on the diet, I would have someone watch the kids and I would go to the grocery store and walk up every aisle grabbing any foods that I thought Crystal might like or does like and just read the ingredients listed on the labels. You would need to watch for the dairy allergens, like I said before, which are: milk, buttermilk, non-fat dry milk (or anything that contains the word milk in it), butter (or anything that contains the word butter in it), cream (any kind of cream is made creamy by milk), whey, caseinate, sodium caseinate, lactose (or anything with the letters lact in it).
It was like a nightmare. I spent hours upon hours searching for food that she would eat and I wasted a lot of food to, because I tried so many things. Crystal does not like any vegetables and few fruits. She really only would eat noodles with spaghetti sauce or margarine, but she did like the veggie dogs. I was worried they would cause her problems so I started out only giving her one every third day, so I was far from filling her tummy. I found plenty of snack type foods that she could have: crackers, chips (plain), popcorn (with margarine), raisins, fruit bars, even some animal crackers are milk free, all fruits and vegetables (including baby foods), peanut butter and jelly, pretzels, potato sticks, and you mentioned he likes french fries which are fine, and there are lots and lots of dry cereals they can have. You said you tried rice milk, but did you try mixing it with Hershey's chocolate syrup or even Nestlé's strawberry syrup? But don't put make such an issue out of getting him to drink another form of milk, pediatric vivonex or Tolerex will supplement his needs of vitamins and minerals. You may need to have the doctor give him a prescription for calcium and vitamin D though; when we figured the RDAs on those they were insufficient. Don't let him talk you into not worrying about the Vitamin D, because the body only produces Vitamin D when we are exposed to sun light and since we keep our kids in out of the weather, they need a supplement for this, because calcium WILL NOT work without the help of Vitamin D. The important thing on drinks is that they get a good amount of fluid in them, which you can supply him with anything: water, juicy juice, Kool-aid…Fluid is necessary for hydration just like it is in even normal children. Fluid helps with blood circulation. Good blood circulation is important because this is how everything is transported to where it needs to go in the body, not just oxygen, but also the release of carbon dioxide. Also, nutrients are passed through the blood. Whatever the body needs, usually it is the blood that takes it there. The more fluid in the blood the faster it circulates.
I
had
to
come
up
with
some
really
crazy
ideas
to
get
Crystal
to
eat.
Like
the
ketchup
sandwich,
stripping
pizza
of
the
toppings,
I
even
stripped
raviolis
of
the
sauce
and
the
meat
inside
and
just
served
her
the
noodles.
I
had
to
do
the
same
thing
with
finding
the
right
mixture
for
her
Tolerex.
I
played
and
changed
it
and
tried
new
things
all
the
time
until
I
finally
got
a
remedy
that
works
real
well.
Q:
Potty
training!!
Help.
We
have
a
seat
for
him
but
he
has
no
meat
on
his
butt
and
it
hurts
him
to
sit
on
it.
Any
ideas
how
to
adapt
it
or
something
that
would
work
better.
He
is
so
ready
and
so
are
we.
A:
I
bought
Crystal
a
cushioned
potty
seat
from
Target
that
fits
directly
onto
the
toilet.
The
whole
in
the
center
is
much
smaller
and
I
don't
have
to
stay
squatted
holding
onto
her
until
she
goes.
Also,
the
cushion
provides
comfort
and
security
for
her.
Q:
Range
of
Motion:
I
printed
out
the
range
or
motion
information.
I
don't
understand
it
but
I
would
like
to
show
it
to
his
therapist.
IS
that
an
ok
thing
to
do?
I
would
think
it
is
but
I
am
sure
I
am
going
to
get
negative
feed
back
from
it.
A: You have my permission to use any of my information that you want. I have two reasons for putting so much time into Crystal's website: 1.) Of course, is so that everyone can get to know her better. 2.) To help teach any other families with any problems they are having with helping their child. I believe all of us have had our problems with getting all the information that we need for our child's care and I just wish that there would be a book outlining all the issues in easy step-by-step instructions. I have actually considered writing such a book, and may just do this, but I will need to have all of my research complete before I do. I know you are losing faith in his therapists but they should definitely know about these procedures. I wish I could see you so I could show you. What I do with these listings is once a week I sit down with her and check each one of the ranges of motions on that list and check for stiffness. I also have a list of definitions for the terms used on that list that may help you understand, but in the mean time get out your copy of the list and look at the second column, it says what the picture is doing and what that term used means. For example, let's look at page two under forearm. Above the picture it says "Pivotal". In the second column it says " Supination: turn lower arm and hand so that palm is up." Supination is the term and then it is followed by what range of motion you are actually doing. The rest of the terms and definitions are handled the same way. After I get done with this email I am going to gather from my Anatomy and Physiology book up all the information about these movements and even on the different types of joints and how many