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 movements each type of joint is designed to perform. Maybe if I can find some info on bones that need weight bearing to develop.
Q:
Finger
bracing: I
remember
you
saying
something
about
her
arm
thing
at
night.
What
was
that
and
what
does
it
do?
I
am
really
interested
in
anything
that
will
help
Aschdon's
left
hand.
He
has
gotten
better
but
I
would
love
to
know
if
there
are
further
things
I
could
do
for
him.
A: Crystal has a brace that fits her whole wrist, but is for her fingers. She has one finger on her left hand that stays curled. Her current, and awesome Occupational Therapist said it was because she keeps her fingers tensed up through the night while she sleeps. It is designed not to keep her fingers straight, to stretch the finger out, but to keep the fingers in the "relaxed" position, which would be like if you laid you arm down and relaxed your fingers and hand. That is the relaxed position for the hand and fingers, but at night Crystal keeps her hands and fingers balled up into a fist. Unfortunately, it wouldn't do anything for supination and pronation. If it is a contracture stopping him from being able to supinate, then the treatment for that (from what Crystal's Occupational Therapist says) is very painful. Crystal has the same problem, but only with both wrists. She can turn her hand completely around one way, but turning her palm up she can only go about half way. We decided that it wouldn't be worth the pain to bring this movement back, but we do range of motion with it daily to make sure it doesn't get any worse. We also do range of motion with all other areas that seem to be getting stiff, even her knees, hips and spine
Q:
No
terms
or
conditions:
May
I
please
use
the
basis
outline
of
your
letters
to
qualifying
therapists
so
I
can
start
and
switching
mine,
as
I
am
not
very
good
at
expressing
what
I
need
in
written
form.
A:
As
I
said
earlier,
you
can
do
whatever
you
want
with
my
information.
You
can
learn
from
it,
copy
it,
share
it…
it
doesn't
matter
to
me
at
all.
I
am
not
looking
for
glory,
my
only
hope
is
that
I
can
help
families
from
having
to
go
through
some
of
the
nightmares
I
had
to.
**
Q:
Religion:
I
don't
know
if
you
are
a
religious
person
but
I
am
so
please
don't
be
offended
when
I
call
you
a
God
send.
Really
I
do.
A: I don't know if everyone would consider me a religious person or not. I feel that I am. But I don't go to church. But I would like to, but we just do not have the type of clothing that would make me feel comfortable attending church. Because of your question though, I did go ahead and called our church to let them know that we very much so want to begin attending again, but that we just don't have the clothes for it. I got an answering machine and they haven't returned my call yet but I am going to inquire about possibly getting some assistance with getting some clothes for my children and me. Besides that I wasn't brought up in the church and I don't really know the bible, but I do try to follow an honest, trustworthy type of lifestyle practicing making right choices. I do know the Ten Commandments and I feel that I abide by them. I do have testimony to a couple of events that I just can't deny the Lord and his part in it. That speaks louder than words ever could to me. I know he is up there and I and I trust and have faith in him that he is our father who art in heaven and that he watches over us. I believe that he is there for all of us who ask for him to be in their heart, and I believe that if you ask him he will guide you in the right direction. Do you think I am a religious person?
Q:
The
fight
with
doctors
and
therapists:
I
have
been
fighting
and
fighting
for
so
long
with
this
and
having
no
one
in
the
state
of
Wyoming
know
what
SMA
is.
A: You are not alone. This is a common thing. I have read many horrifying stories about due to the doctor's lack of knowledge, major harm was done to the child. Ignorance is everywhere: Therapists, Doctors, Nurses, Hospitals, Medicaid, Waiver programs, dieticians…you name it. You are going to have to be the one responsible for gathering up information for your child. Make sure and get hard copies, addresses, phone numbers, or any way you can to get this information to the professionals that are involved with your child. They often won't listen to common people, but they will however listen to facts from other professionals. I also have had to go over their head before, and do it anyway and then go back and say, "Look at what I have done and the effect it has had on my daughter. I think it is important that you back me on this treatment plan."
Q:
Poor
bed
side
manners
from
therapist:
Well
I
was
thrilled
with
his
progress
and
wanted
to
share
it
with
his
speech
therapist
as
she
was
only
observing
Aschdon
since
he
had
caught
up.
Well
she
dismissed
what
I
was
telling
her
(which
is
my
son
is
saying
5-6
word
sentences
and
using
the
little
words
like
as
&
and)
and
she
asked
about
his
wheelchair.
Well
I
told
her
we
finally
got
it
but
as
of
right
now
he
is
too
weak
to
use
it.
She
told
me
that
I
needed
to
have
him
in
it
anyways
and
stop
letting
him
get
away
with
playing
like
he
is
a
baby
and
helpless
A: I feel like your therapist was right and wrong: I know it is hard to be firm with your children, and it is even harder to be firm with a child with such fragile and special needs as our children do, but it is for their best interest that you really need to establish a relationship with your child that is both that of a compassionate and caring mother and also one that is that of a teacher that is willing to put her foot down and get things accomplished for her student. Being a teacher does not mean that you will need to be cruel by any means, just that you would use such skills as providing distraction and redirection techniques to try and make the child forget that he is having to work. Use creative ideas to disguise the work into playful activities and games. Follow your child's guide and let him make as many of the decisions as possible. If he doesn't want to let you do the stretching, then use his legs to play "Peek a Boo", or something else that would strike your child's interests. But always be his friend and think of this as his time to grow and be more active in life.
I feel like your therapist was wrong in that it sounds like her bedside manners are just awful and unacceptable. She showed no compassion for your joy, which makes me wonder just how much compassion and concern she does have for your child.
Q:
Importance
of
communication
with
therapists:
His
PT
I
really
don't
like
as
she
doesn't
listen
to
me
and
has
unrealistic
goals
for
my
son.
A: It is a must that the parent understand all the issues involving their child so that they can share input and ideas to the therapists, and then in turn the therapist also needs to realize that sometimes Mom knows best. Because Mom is with the child more then anybody, it is often helpful to share ideas with the therapist concerning the child so that they can better evaluate the child. Unless, the therapist has spent an adequate amount of time with researching SMA specifically, then they will need to listen to you. If they don't then call their bluff and tell them they need to either research for themselves and/or read information that you can provide to them. I had a big problem with this with both Occupational Therapies and Physical Therapies. In fact, Crystal's OT looked at me straight in the eye and said, "I don't have enough time in my day here at the center to research all of the children's disabilities that I see. When I go home I have my own child and a husband, which I am sorry if this hurts your feelings, that are my first priority." Both therapists have been replaced and the new ones just are not like them at all. Best decision I have ever made for Crystal. I mean, I don't care what their problems are, it need not interfere with my child's care or they just are not qualified for the job of taking care of my child. End of story.
Q:
Legs
and
keeping
them
alive:
I
agree
about
the
legs
being
forgotten.
I
asked
and
asked
for
ideas
to
help
my
son
with
his
legs.
I
do
what
I
know
but
it
isn't
working,
as
his
legs
muscles
are
getting
so
tight
he
can't
even
straighten
his
legs
now.
A: Why is it that since a child can't walk therapists doesn't feel it necessary to work with their legs? It is beyond my logical thinking. The less activity going to a muscle group, the weaker they are going to get. The arms and trunk are so easy to work because they do not require one on one attention all the time in staying active. But the legs on the other hand, often are so weak that they are so few activities that they can do. What we as parents have to do is place the child in the proper position to do the activity and let them do as much of it as their muscles will allow and then we pick up the slack. Example: Walking-When I first started walking with Crystal, I was doing actually most of the work. I continued to do it any way just to teach her the proper procedures (right, left, right, left…). I held her pelvic girdle and supported her tummy with my forefinger and with my thumbs I would actually push her legs up and thrust them forward. Everything I did was slow allowing her to contribute as much as she could. Once she got the procedures down, I could feel her beginning to assist me in moving her legs. She could drag her foot if I lifted it some. As time went on she realized that if she leaned her trunk to the left, this would lift her right foot up some and then she could move her foot forward all on her own. I continued to support her trunk and hold her upright but she began to advance her legs forward all on her own. It has taken a long time, but currently she doesn't lean her trunk as much and is able to actually lift her foot slightly while advancing it forward. Coming to a sitting position-Often Crystal used to fall and lay down. We always kept a pillow behind her for this. I took advantage of every fall by not picking her up by myself. I only put forth enough effort for her to be able to do it herself. If they believe they can do it then they will. If they don't believe they can do it then they won't even try. Always set your goals high for your child, but let the goal always include "With assistance".
Stretching and even massaging techniques are best effective if you apply them several times throughout the day. This is all that I know to do for muscle and tendon tightness. But for contractures, I was once told to put them in a bath of hot water (not too hot to hurt or cause exhaustion), and do the stretching and massaging there for about a half an hour a couple of times a day. The heat of the water is supposed to help relax the joints.
Q:
Ideas
for
the
legs:
As
for
bearing
weight
on
them
I
couldn't
even
imagine
having
him
try
that,
as
I
know
his
hip
is
out
again.
I
had
a
prescription
for
a
stander
but
the
therapist
wont
do
it
because
she
said
he
has
to
be
able
to
straighten
his
legs
and
that
with
his
hip
out
it
would
do
more
damage.
So
I
need
help
on
this
one.
Do
you
have
any
ideas
on
something
I
can
start
with
to
help
his
legs
get
stronger
and
maybe
able
to
stand?
A:
Yes,
I
have
lots
of
ideas
to
start
him
off
with,
but
I
can't
say
that
I
would
recommend
anything
at
this
point.
The
first
issue
that
needs
to
be
completed
is
his
possible
contractures
and
hip
dislocation.
This
is
not
an
issue
that
Crystal
has
a
problem
with
and
I
am
really
limited
to
the
knowledge
I
have
inquired
for
Crystal's
benefit.
I
would
advise
strongly
asking
your
family
doctor
to
make
a
referral
for
your
child
to
be
seen
by
an
orthopedic
surgeon
and
have
these
issues
handled
by
him.
He
would
know
what
to
do
about
the
any
contractures
or
dislocations
and
if
it
would
be
harmful
to
your
child
if
you
tried
any
standing
or
walking
activities
with
him.
If
it
is
too
late
for
him
too
walk
or
stand
then
that
is
the
way
it
must
be,
because
your
child's
safety
is
also
an
important
issue.
Explain
to
him
that
he
really
needs
to
be
more
involved
with
activities
of
standing
and
leg
muscle
therapies
and
if
the
treatment
wouldn't
be
too
devastating
to
your
child
it
may
be
a
good
idea
to
see
if
he
will
go
ahead
with
it.
Q:
Having
the
best
therapists
for
your
child:
I
had
also
asked
the
head
start
about
switching
PT
as
that
is
where
we
are
going
through
but
they
told
me
I
need
to
discuss
it
with
my
present
PT.
I
liked
your
idea
about
interviewing
therapist
and
I
think
that
I
what
I
am
going
to
try
to
do,
as
my
son
needs
someone
that
is
willing
to
help
him
as
much
as
I
am.
Suggestions
on
that?
A: Crystal goes through First Steps Intervention. Do you have that service available to you in Wyoming? Does your child have a Service Coordinator? If not, it would be a good idea to get one. Call your doctor and ask him if he has a list of different services available in your community to assist needy families. He also may be able to tell you other options available to your child other than Head Start. We have Head Start here in IN, but it was not recommended that Crystal receive her care from there. First Steps Intervention is actually quite thorough with parental rights that assure you that you are actually in charge of your child's care and decision-making. Having the desire to help your child as much as you are is the way a therapist is supposed to be. If you have one that is not then they may be just doing the work for the money or burnt out. The two therapists I had to let go seemed to be that way. The therapists Crystal has now show their excitement when they talk to me about what is going on with Crystal. In fact, her new OT shocked me on the phone when I called to let her know that I had chosen her. I said, "I have made my decision and was calling to let you know." and I could literally hear her holding her breath while she waited for me to tell her. When I told her I chose her she let her breath free, sighed and said, "Oh that's wonderful. I am so excited." And when she comes to the house, that is what I see, excitement and joy while she works with Crystal. Her new PT is the same way.
Q:
Therapist
write
the
recommendations
for
equipment:
When
we
went
for
our
approval
for
his
wheelchair
we
were
also
supposed
to
do
his
stander
but
his
PT
wont
do
it
and
the
company
wont
do
it
without
a
PT
approval.
A: That is one of the reasons why it is so important to be able to communicate and get along with your child's therapists. There are some things that you will not be able to do without them. Even if the doctor would write a prescription for medical equipment, Medicaid will insist on having a recommendation from the therapist. There is a fine line between a therapist respecting a parents wishes and where the parent needs to listen to the therapist and at least admit that, until you can find evidence otherwise, that what they may be saying is true. If a good relationship can not be established between parent and therapist, then I believe a new therapist should be sought out.
Q:
Keeping
notebooks
and
files:
I
would
like
to
be
able
to
have
information
on
file
as
I
can
then
pull
it
out
when
I
need
it
and
have
it
there
to
show
therapist
and
his
doctors
(which
we
have
really
caring
doctors
that
take
care
of
Aschdon.
They
don't
know
really
what
SMA
is
or
how
to
help
but
they
do
listen
to
me
and
look
at
me
for
direction).
A: I have found that the professionals that are interested in staying open minded and continue their growth in knowledge, are always more than willing to read research articles and words from other doctors to not only benefit their knowledge and experience, but also to see that their patient receives top quality care. It is however, in the "Hypocritical oath" that they all sign that they vow not to ever let their views be altered for personal gain or in any manner that would put their patient in harms way. So for this reason and others too, it is best to work with them on their level; by providing them with material that they can research and learn and understand for themselves. They must know that the patient is not going to be harmed. On items that I present to Crystal's doctor that he feels just will not hurt her, he doesn't require for me to supply him with any information. But on the issues that could put Crystal at risk, he will refuse to the end until he truly believes it will not hurt her. With the right therapists and even the right dietician, you can teach and train them about SMA as well.
Q:
Fatigue:
I
would
like
some
articles
or
info
on
fatigue
and
how
it
is
detrimental
to
their
health
if
they
get
overly
tired.
I
have
tried
to
explain
it
to
the
therapist
but
they
just
don't
listen.
A: I currently don't have any handouts or links to that type of information. I came to this conclusion because I have been warned about it from Crystal's therapists (even the old ones) of this problem. But I am sure that there is information about it on the web. I have done a lot of experimenting personally with Crystal on the fatigue issue and I then began having a conflict with her old therapists because they were overly concerned with fatigue. They were not willing to see how much Crystal could handle and they would blame every episode of weakness that Crystal would have on fatigue. They were both very narrow minded. They told me the same information over and over as though I was stupid and couldn't retain the information. I always thought in my head, "Okay, I got it. Next topic." But never the less I have got Crystal on a consistent schedule within her limitations. Of course, you would have to find out what your child's limitations are. Also, when I am working with her I always let her be my guide. If I know that she is well entertained and not just bored and she tells me she wants to stop, then I honor her wishes always and this has been real effective because she knows best of how she feels and when she is getting tired and it is best that SMA children do not over exert themselves. The reason I know this is because I have seen it in Crystal. When I used to try and push and encourage her to do more, she would become exhausted and fatigued. And it is not that being fatigued is detrimental to their health, but that it will leave them even more weak and unable to function up to their norm. So they don't have any wasted time just laying around not being productive you want to avoid fatigue always. Consistency is always best with many issues involving these children. As far as things that you would be in control of making sure to avoid fatiguing your child, there are a couple of things that are important: 1.) Make sure that he has a consistent sleeping schedule. For nap and bedtime the same time (or close to it) everyday and make sure you allow him to receive as much sleep as he needs. Avoid situations where you are waking him up. Let him sleep until he is done. If our children do not receive a good sleep schedule then they can stay fatigued for as long as two days after they get back on track with their sleep. I have seen this in Crystal every time I dare to steer away from her schedule she has problem with fatigue and with her it would take her two days to recuperate. 2.) Avoid heat. In the tub and outside. They both can drain your child of energy and leave him fatigued again for as long as two days. I follow the rules for outside that anything between 55º and 80º Crystal has no limitations on how much time she spends outside. 80º to 90º I only allow her to be out for 15 minutes at a time maybe once an hour maximum. But definitely anything higher than that, then she stays inside. And as far as the bath tub I do not limit her time, I just decrease the heat of the water instead. She has grown accustomed to taking luke warm baths. I even prepare the water in her horse's troft at a luke warm temperature. The amount of fatigue acquired from too much therapy has shown in Crystal to be only a few hours though. Often I will put her in her horse's troft a couple of hours before bed and just let her have at it, until she is done. Yes, I see her fatigued when I get her out but I also see in the morning when she wakes up that she is fine, and ready to go for some more. This is also why I rotate her activities throughout the day to different muscle groups, to allow adequate time for her muscles to rest until she works them again. Often while I am assisting her with walking she will ask to sit on my lap and then want to get back up only 2 minutes later.
Q:
Nutrition:
Next
my
biggest
thing
is
his
nutrition.
I
need
all
the
info
I
can
on
that
one.
Example
should
we
go
back
to
feeding
him
baby
foods?
A: It is my belief to forget about all the worries of proper development in the eating field, because the diet limits what they can have so much that they need some relief too. I insist Crystal takes her amino formula with all of her supplements in it and I make sure that her fluid intake stays at a decent level and then after that I do the best I can to provide anything that she will enjoy eating and let her make the decision. I still give Crystal some of her favorite baby foods because that is an easy way to help keep her calorie count up. But I never force her to eat for her calorie count. Doctor says as long as she is growing and gaining weight he wouldn't worry about it. And she does grow, and she gains weight just maybe an ounce between each visit. I even give Crystal a baby bottle with filtered water in it to go to bed with and she has been broke off the bottle since she was a year old.
Q:
Serving
supplements
(hard
pills):
For
his
vitamins
and
other
supplements
(folic
acid
and
such)
how
do
we
give
that
to
him?
I
know
it
is
something
he
needs
but
he
can't
swallow
a
pill.
A: I crush all of Crystal's supplements that come in a pill form and make them powder form. I do her multivitamin and vitamin D pill this way. Folic acid is on the top of the list for my next research, but at this date I only have one piece of information concerning folic acid research and it is located on the "amino acid diet" page of Crystal's website.
Q:
Chiropractor:
We
have
had
it
suggested
to
us
to
bring
him
into
the
chiropractor
as
that
will
help
slow
the
scoliosis
down
also.
We
were
doing
it
for
a
while
but
when
we
got
told
it
was
bad
we
stopped.
Do
you
know
anything
about
that?
A: Chiropractor being involved with SMA is the first I had heard. But if it works then that probably would be a good idea to continue, because as far as hip dislocation the orthopedic surgeon say surgery is the only thing to do for his hip.
Q:
Being
told
to
stop
standing:
At
one
point
we
were
doing
standing
exercises
with
Aschdon
with
his
belly
against
the
couch
and
us
supporting
him
from
behind
but
eventually
the
therapist
said
not
to.
No
reason
given.
A: Anytime you have instructions for your son from any professional team member, don't let the issue rest until they can make you understand all the whys and whats. In this situation, I wouldn't stop asking until I understood what I can do to correct it, or if they don't know they should at least tell you where to go for help. I do all kinds of standing exercises with Crystal. She has sublexed hips, partially dislocated, but the dislocation is not complete. I was not told to stop standing or walking her. Her legs are not curled either. During her stay at the hospital for her last pneumonia episode, they had to put the IV in her ankle and her legs seemed to get locked in the curled position. They also got locked in the stretched out, and straight position too. I would massage the legs and do stretching but, which helped but she really needed to get up on her feet. I explained to the doctor what was happening and since she had been on the IV for two days, she should be hydrated enough to get a stick in the hand like they usually do. He said okay. It was done and I began her weight bearing and the problem then seemed to be over.
Q:
No
regrets:
Honestly
if
Aschdon
never
stands
or
walk
it
is
ok
with
me.
I
just
want
to
be
able
to
help
him
go
to
his
limits
for
him
without
thinking
back
some
day
and
wondering
if
there
is
something
else
I
could
have
tried.
A: If you want him to go to his limits, then standing and walking is very much a big part of that. Some of us believe that a cure is right around the corner and want to prevent, as much muscle wasting as possible and stop and contractures, but the cure is not going to be able to fix this kind of damage. Then you may have a huge deal of regret to deal with. I know and understand that Crystal will never be able to walk, but I want her to always be able to do what ever she can, even if she can't do it by herself, I will always be there to assist her. Besides anything that you don't try, eventually you will always be able to say, "I wonder what would have happened if I had've tried that, or this…"
Q:
Therapist
sometimes
are
too
late
with
information:
As
for
my
therapist
being
right
how
come
she
didn't
help
get
the
stander
or
do
other
exercises
when
his
hip
was
in
the
socket?
A: That is another issue we share. There were many issues that I was the one who had to point it out to therapist, and by the time I questioned them about it, then it was already too late. Like the range of motion exercises would be my biggest example. I was not told about any of it. Until I noticed one day when I was trying to turn Crystal's hands up so I could put lotion on them for her to play with I never even thought about range of motion. I was terrified to see that I couldn't turn them even half way up. I spoke to the first therapist that came after I saw this and what do you know, they had a whole book of information on it. Well, Crystal will never be able to correct this contracture without going through a lot of pain so now it is too late. The therapist she has now are constantly evaluating her body and needs. They believe in be safe then sorry. Even if they see something wrong and they don't think it is a big deal, they still requests test in case. And they to this day are still filling me full of more information as she grows and her circumstances change. These therapists from Crystal's past may be okay for some of the simpler delays, but SMA is too critical and everyone must stay on top of her care to make sure that she is okay.
Q:
Range
of
Motion:
The
best
thing
and
the
only
thing
that
the
therapist
has
given
us
to
help
straighten
out
his
legs
are
with
every
diaper
change
we
are
to
stretch
him
by
putting
one
knee
to
his
chest
while
straightening
the
other
and
holding
for
10
seconds.
But
with
his
hip
out
it
has
been
causing
him
pain
when
I
do
it.
Also
I
forgot
she
wants
us
to
put
him
on
his
stomach
more
so
he
can
stretch
that
way.
I
try
to
do
it
but
he
cries
so
much
that
I
honestly
don't
do
it
much.
He
only
cries
because
the
carpet
irritates
his
face
and
he
can't
roll
over.
A: That is what I used to do. The more often you can do it, the better and diaper changing just seems like the perfect opportunity because you are already there anyway. Crystal never liked being on her belly either. And if I couldn't lift my head up, I wouldn't want it scraping against the carpet either. But Crystal was easy to pacify by putting a soft bedspread down while I worked with her. It is the same bedspread I use when we practice her rolling. I don't know your son, or why he cries but you might want to try not stretching so far. I noticed that when you stretch you can feel it getting tighter. I only go a small bit further after I feel it getting tighter. I play games with Crystal while I do all of her stretches, because she doesn't like it either. But again, she is easily entertained.
Q:
Rolling:
By
the
way
he
used
to
roll
over
but
when
his
hip
went
out
again
he
stopped
doing
that.
Is
there
any
way
to
help
him
be
able
to
do
that
again?
A:
I
put
to
play
the
theory
that
"If
they
can't
do
it
by
themselves,
then
I
will
be
there
to
assist
them
so
they
can
do
it."
Crystal
went
through
a
period
where
she
was
having
a
hard
time
rolling
over
by
herself.
She
would
often
get
stuck.
And
she
hates
being
face
down
and
stuck.
For
a
while,
I
kept
trying
to
encourage
her
to
do
it
on
her
own.
I
would
even
bribe
her,
but
it
seemed
that
she
really
just
couldn't
do
it.
I
wasn't
willing
to
accept
that
because
rolling
works
so
many
muscles
all
in
the
same
exercise.
Finally,
I
figured
out
a
way
to
assist
her
all
the
while
she
can
put
forth
as
much
effort
as
she
was
able
to.
I
don't
know
if
I
would
ever
be
able
to
explain
how
I
do
it
in
words.
I
am
half
tempted
to
make
you
a
demonstration
video,
because
I
feel
that
success
is
all
in
the
technique.
I
kinda
bump
her,
softly
and
slightly.
I
place
my
hand
on
her
bottom
and
just
give
her
a
little
nudge,
I
can
feel
her
efforts,
any
progress
she
makes
in
the
right
direction-then
my
hand
is
right
there
to
make
sure
that
she
doesn't
roll
back
which
is
discouraging
to
her.
Once
she
makes
the
roll
to
her
belly,
I
taught
her
the
position
her
arm
needed
to
be
in
to
continue
the
roll.
She
must
put
her
arm
up
before
her
head
reaches
the
floor,
because
her
head
will
lay
on
her
arm.
She
can't
lift
her
head
over
her
arm
so
we
just
fixed
that
problem
by
always
keeping
her
head
level
with
her
arms.
Then
as
she
lifts
her
tummy
up
to
complete
the
roll,
I
revert
back
to
nudging
her
and
softly
bumping
her
and
not
allowing
her
to
fall
and
roll
in
the
wrong
direction.
Does
this
make
sense?
Well
now
she
is
back
to
rolling
all
by
herself
and
she
rolls
very
well
too.
She
actually
enjoys
it.
I don't see that the hip would cause any problems with this, but again this is an area I have little experience. I wish I knew what the differences between our children's hips were. I am scared to advise you for fear that it may cause him problems that I was unaware of.? Sorry.
Q:
Supination
(turning
palms
upward):
Aschdon
can't
supinate
his
left
arm.
I
have
asked
and
asked
to
be
shown
how
to
do
the
stretching
for
it
but
they
said
that
it
is
their
job
to
do
that
and
that
I
should
just
be
the
mom
and
not
have
to
do
those
sorts
of
things.
A:
I
put
my
thumb
on
the
bone
just
below
her
thumb
in
the
palm
of
her
hand
and
simply
pull
it
outward.
It
seems
that
this
spot
helps
move
the
whole
hand
at
once
and
doesn't
scrunch
her
hand
or
fingers.
It
is
their
job
to
teach
you!!
Something
as
important
as
stretching,
needs
to
be
done
frequently
everyday.
How
are
they
going
to
take
care
of
that?
Patty
cake
is
Crystal's
favorite
way
of
doing
this.
Also,
Every
time
I
wipe
her
hands
down,
with
the
was
cloth
I
pull
her
hand
outward
using
that
same
pressure
point.
I
was
told
that
the
contracture
couldn't
be
corrected
without
causing
her
great
pain
and
they
advised
me
not
to
pursue
it.
But
I
still
do
the
stretching
to
keep
it
from
getting
any
worse.
Q:
My
husband
and
me
do
little
things
with
him
to
help
his
arms,
as
they
are
really
skinny
and
weak.
We
make
sure
he
helps
or
at
least
tries
to
help
take
his
shirt
off
and
his
socks
off.
A:
I
just
wanted
to
comment
on
the
fact
that
this
is
an
excellent
way
to
work
with
your
child.
Most
children
have
a
real
strong
interest
in
doing
things
for
themselves
and
that
might
be
just
the
way
to
disguise
the
therapy.
You
can
practice
brushing
hair,
opening
the
drawers,
picking
out
his
clothes,
washing
himself,
the
sky
is
the
limit….I
involve
normal
everyday
functions
in
her
therapy
all
throughout
the
day.
Like
her
walking
for
example,
I
don't
have
a
session
with
her
walking.
I
just
walk
her
to
her
next
activity
and
to
the
potty.
This
usually
consists
of
about
5
minutes
of
walking,
maybe
20
steps.
I
don't
know
I
haven't
really
ever
counted
the
steps.
Q:
Manual
vs.
Power
chairs:
As
for
his
wheelchair
it
is
manual
also
as
the
muscle
clinic
in
Denver
said
it
is
a
technicality
that
we
have
to
go
through
in
order
to
get
an
electric
one.
A: I would exhaust myself trying to come up with ways to get him on hard surfaces so he could use his manual wheelchair. When Crystal first got hers, she could barely move it. And little by little she got faster and now she just goes anywhere she wants to on tiles. She can't move it on regular carpet, but she can on the real flat thin carpet but that will tire her after a while.
Q:
Scripts
for
equipment:
I
would
also
like
some
help
about
getting
equipment
for
Aschdon,
like
a
stander,
and
gait
trainer.
A: You need to take care of his other issues first, like the contractures and the dislocated hip. If the doctor and/or the therapist agree that he can begin weight bearing again, then you will have to work his legs up to being able to use the gait trainer. There is also another assistive device that may be a good thing for you child. They are called RGOs. They are supposed to assist in walking with a mechanical mechanism in the back you can push to have the leg proceed forward. I haven't followed through with these only because I feel Crystal does well without them. Remember the order they need to be requested: The stander and then the gait trainer. Indiana Medicaid will pay for them. Crystal has them. Crystal's wheelchair and gait trainer was approved on the same Prior Approval.
Q:
Leg
activities:
He
has
such
a
high
desire
to
walk
but
we
have
no
means
of
being
able
to
work
with
him.
A: Even if he can't weight bear, there is still lots of things you can do with him. Like in the water. Scoot toys. Kicking games. You can hold his legs up in the air and play games with them. Even positioning the legs laterally while he is sitting will help. When you hold him even place the legs in the lateral position.
Q:
Medicaid:
I
was
told
that
Medicaid
wont
cover
that
stuff
unless
we
get
a
waiver
but
we
cant
get
a
waiver
because
he
is
not
mentally
handicap,
is
this
true?
A: I don't understand that one at all. That is not the way it works here at all. Medicaid pays for everything that Crystal needs. She has not been denied anything. She is on the waiting list for the Developmentally Disabled Medical Waiver, but that waiver has a 3-5 year waiting list. We also have a "Special Needs Medicaid" here which is supposed to cover even more equipment that regular Medicaid may not cover.
Q:
Damage-What
is
permanent
and
what
is
not:
It
took
us
2.5
years
to
know
what
was
wrong
with
my
son
and
by
then
I
know
some
of
the
damage
was
already
done
due
to
lack
of
knowledge
or
help
from
doctors.
A: One important thing that you might want to think about: The only permanent damage in strengthening is the nerve damage. Any nerve cells that may have died while waiting for the diagnosis are dead and there is no way to bring them back. But the muscles are not dead, they are just atrophied. This mean no nourishment or no development. Which you CAN correct. You just have to nourish them and develop them through therapy and helping your child keep these muscles active. The strength can come back. The control all depends on the remaining nerve cell count. The larger the nerve cell count the higher range of strength you have to work with. The lower the nerve cell count the lower range of strength you have to work with. And there is no way to measure this. You just keep working with your child and eventually he will get to where his strength has stopped increasing. That is exactly where the strength gain comes from in these children. They are just strengthening already existing muscles.
Q:
Be
clear
and
give
full
detailed
instructions:
I
am
trying
my
best
to
do
research
but
I
guess
I
am
just
not
very
good
as
I
don't
have
any
one
to
consult
with
as
the
therapist
don't
agree
with
me
and
the
doctors
don't
know
enough
to
help.
We
have
gone
to
a
nutritionist
but
that
was
no
good
because
they
don't
know
what
to
do.
A: Research was very hard for me too. It took me taking medical classes to start being able to understand some of this stuff. For school, I had to read it over and over and embed it into my head. My researching skills are improving over time and now it just isn't as difficult. Just don't shy away from it, because it will get easier. I have had to teach both her doctor and her dietician about SMA and then they have applied what they know. Together your child can be taken care of. I hate hearing about the conflict with the therapist. I know I was going crazy when I had to deal with it.
Q:
Tolerex
and
supplement
mixing
example:
Everything
I
get
is
so
vague
and
honestly
I
need
things
written
out
exactly
as
they
are
to
be
done
or
I
don't
get
it.
Not
that
I
am
stupid
by
any
means
that
is
just
the
way
I
learn.
SO
maybe
you
can
help
me
in
that
area
and
tell
me
exactly
how
you
give
her
supplements
and
Tolerex
and
such.
A:
In
the
beginning,
I
started
out
with
just
the
Tolerex
(would
be
the
same
as
the
pediatric
vivonex),
calcium
and
vitamin
D,
and
a
multivitamin.
1.I
mixed
only
half
a
packet
with
only
2
oz
of
water.
2.I
then
filled
the
bottle
up
to
eight
oz
of
juicy
juice.
3.I
crush
her
multivitamin
and
vitamin
D
pill
into
powder.
4.
I
add
calcium
(which
is
liquid),
Vitamin
D,
and
multivitamin
to
her
eight
oz
bottle
and
shook
real
well.
(Now
I
add
2
tablespoons
of
Jell-O
to
this
as
well.
This
is
what
made
Crystal
finally
stop
fighting
me
over
taking
her
aminos).
5.I
then
divide
that
amount
evenly
between
two
bottles.
6.And
fill
both
bottles
up
to
9
oz
and
shake
bottles
well
again.
Has
it
been
explained
to
you
about
protein
storage
and
how
SMA
children
can't
take
too
much
at
one
time
or
it
will
be
toxic?
Since
all
the
SMA
children
have
their
own
tolerance
level
no
one
could
tell
me
how
much
to
give
her.
So
I
felt
I
started
at
the
very
bottom
at
a
level
I
felt
safe
wouldn't
be
too
much
for
her.
I
also
decided
it
would
be
best
since
she
couldn't
store
any
of
the
amino
acids
for
later
use,
to
only
give
her
what
she
would
use
within
a
couple
of
hours.
So
I
divided
the
total
of
both
bottles
(18
oz)
by
six
doses
a
day
served
evenly
every
three
hours.
6:30
am,
9:30
am,
12:30
pm,
3:30
pm,
6:30
pm,
and
9:30
pm.
Now again, no doctor or no dietician is going to be able to tell you exactly what you child needs, you are going to have to experiment with it. Keep his formula the same for an entire month of him showing consistency with it. (as in no problems) When you feel comfortable that he tolerates the amounts of amino's, then up the level some like maybe to 3/4 a packet. But no matter what supplement you read about and believe he needs and decide to add to his formula, only add one change per month, so if he does experience problems you will know exactly ingredient has caused this and you can either adjust the dosage or take him off. Whichever you feel is best for him.
Now,
almost
a
year
later:
(Please
do
not
use
this
remedy
to
start
out
with)
I
mix
these
items
and
their
amounts
the
same
way:
1.
1
1/4
packet
of
Tolerex
2.
10
oz
of
juicy
juice
(makes
two
7
oz
bottles)
3.
225
mg
of
glutamine
4.
1
amino
75
capsule
5.
1/10
of
teaspoon
of
creatine
6.
1/2
multivitamin
7.
1/2
vitamin
D
capsule
8.
4
juice+
capsules
9.
3
mg
of
calcium
10.
2
tablespoons
of
Jell-O
Now I still serve this divided up throughout her awake hours, but I don't feel it necessary to give as often as every 3 hours. So I divide the 14 hours (both bottles total) into 4 servings through the day giving 3 1/2 oz each time at 8:30 am, 12:30 pm, 4:30 pm, and 8:30 pm. With her bedtime dosage I add 1 tablespoon of cornstarch to slow the digestion to avoid ketosis (break down of muscle for energy).
Q:
Water
therapy:
We
are
going
to
be
doing
water
therapy
as
I
heard
it
is
excellent
for
SMA
kids.
A: Water therapy is a must. Crystal moves like a normal child in the water. Have you been to her "aqua therapy" page on her website. She actually has a horse's troft at home that she gets in everyday. She can walk all by herself in there. She has all kinds of stunts she pulls in there. She is getting real close to be able to back float. The key is to have the water level up to about an inch below their shoulders. This relieves them of enough weight that the muscles they have are enough to let them be normal. When I first put Crystal in the pool, it was like teaching a 9 month old baby how to walk. I even had to teach her that she needed to put her foot down because it kept wanting to float to the top.
