The following are common questions asked by parents and
caregivers of children with spastic hemiplegia and physicians
who are considering the FirstFlex™ program
offered by Ultraflex Systems, Inc.
Ultraflex is the only manufacturer of custom joint
mobilization systems for spasticity that addresses the dynamic
and static treatment components of spasticity.
The
questions that follow are related to the FirstFlex™ treatment protocol for children with spastic hemiplegia (hemiparesis).
This conservative treatment program combines custom bracing
and neuromuscular electrical stimulation (NMES).
Q&A
Q.
What type of patient is best suited for the FirstFlex™
program?
A. Patients, ages 3 to 20, with Cerebral Palsy induced upper extremity
spastic hemiplegia. They will have mild to moderate spasticity
in their scapula, shoulder and elbow and moderate to severe spasticity
in their wrist and fingers.
Patient cognition, motivation and parental support must also be
carefully evaluated, as the program for spastic hemiplegia (hemiparesis)
requires an extensive time commitment on the part of the patient
and caregivers.
Q.
Who do I need to talk to in order to get this treatment for spastic
hemiplegia (hemiparesis) for my child?
A. You can talk to us first and we will guide you through the process.
Your
child's doctor is the one that needs to prescribe the FirstFlex™ program. We are happy to send your doctor the complete
research studies and videos so that he can better assess
the program.
If
you do not have a doctor, we can recommend one in your area. If
you have an orthotist or therapist, he/she can help you as well.
Always feel free to contact us at 1-800-220-6670 if you
wish to discuss facilitating treatment. We have a clinical support
team ready to assist you in the complete process.
Q.
Does insurance cover the treatment program for children with spastic
hemiplegia (hemiparesis)?
A. In many cases insurance will cover the program if your
policy includes coverage for DME and orthotics and prosthetics.
Your orthotist should be well versed in these issues.
We
have reimbursement specialists, who are available
to answer your questions and guide you and your orthotist
through this process.
Q.
How many years were spent on the research on the FirstFlex™
treatment program?
A. The retrospective study comprised
a period of 7 years.
The prospective study was conducted
over a two+ year period.
Q.
Do I have to travel to a certain location to arrange for casting and treatment?
A. No, we will help you arrange for casting and treatment in your
area.
Q.
How long does treatment last?
A. Treatment usually lasts from 6 months to a year. However, treatment
may last longer or need to be reinstituted later in adolescence
for some children. The retrospective study reported treatment
windows from 3 to 43 months.
One
patient in the retrospective study on children with spastic hemiplegia
has been on a maintenance program for more than 5 years and has
not shown any signs of regression.
Q.
Can you refer me to a doctor who will prescribe this for my child?
A. We prefer that you use your current doctor and allow us to contact
him with the complete studies and videos overviewing the program.
Q.
What kind of carryover can be expected in daily activities?
A. Most study patients experience significant
improvement in reach, grasp and pinch which greatly
assists in activities of daily living. For example, activities such
as hair combing, dressing and play activities are often reported
to improve.
Q.
Does the neuromuscular electrical stimulation (NMES) hurt?
A. No, it doesn't hurt if used properly. As a matter of fact
it's often referred to as the "tickle machine."
We
have found, however, that children are sometimes fearful that
it will hurt and that fear and negative anticipation can be a
compliance issue. That's why we strongly recommend that the stimulation
be conducted on a parent prior to using it on the child.
Q.
Do many children complain about the twice daily therapy sessions?
A. Yes, frankly, compliance is a key issue. Children want to
play, not exercise. We find that parents have to be creative to
find a way to address compliance. For example, some children do
their therapy while watching a 30 minute video. Others are permitted
to play video games.
We
stress that strong parental involvement is critical to
the success of the FirstFlex™ program. Additionally,
it is imperative that the patient have sufficient cognition to
understand that this is something that he/she needs to do for
himself/herself. He/she needs to have an interest in improving
reach, grasp and pinch.
Q.
Is the brace uncomfortable?
A. No, we have not had any reports that the brace is uncomfortable,
unless the patient's anatomy changes significantly through growth.
The
brace is layered on the inside with foam so that there is a cushion
to maintain good skin integrity. If there is a specific problem
with an area of the brace that is uncomfortable, it can, in most
cases, be modified to promote optimal comfort or to address
changes in limb volume or growth spurts.
Q. Is it difficult to sleep with the brace
on?
A. Some children have reported that they can't make it through an
entire night with the brace on. We feel that optimally the child
needs to wear the brace at night for at least 6 hours. If they
get up in the middle of the night and need to take it off for
whatever reason, that is not a problem… as long as they are
averaging a minimum of 6 hours per night.
Q.
What is the maintenance program?
A. Typically, the child uses the brace and stimulation once
every other week for 30 minutes, implementing the therapy
protocol associated with FirstFlex™. He/she
is also instructed to wear the brace once a week at night.
Periodic
monitoring by the providing orthotist and semi-annual reviews
are indicated as well.
Q.
Why is the program only for children with hemiplegia (hemiparesis)
and not diplegia or quadriplegia?
A. The retrospective and prospective research was conducted on
spastic hemiplegia only. Further research will be necessary
before this program could be adapted, if at all, to other CP populations.
Q.
Who paid for the research?
A. The retrospective study was funded by the WHAS Crusade for Children
and Ultraflex Systems,
Inc. The prospective study was funded by the WHAS Crusade
for Children, the Gheens Foundation and Ultraflex Systems, Inc.
Q.
Have any of the children been embarrassed to wear the brace?
A. That has not been reported. As a matter of fact, most children
love their brace and think it is cool. That seems to be the
usual perception of their peers as well. We can make the brace
in a variety of colors and also use tattoo type transfers of their
favorite action heroes or cartoons.
Q.
Does the brace come in different colors?
A. Yes, the brace comes in standard colors of pink, blue, purple,
yellow, black, white and red. We can also custom order other colors
upon request.
Q.
Where can I get more information about the FirstFlex™
treatment program for children with spastic hemiplegia (hemiparesis)?
A. The FirstFlex™ research
section describes more about the two studies undertaken
by the Kleinert Institute. Also, you can discover additional information
about treatment
options for children with spastic hemiplegia (hemiparesis)
and the FirstFlex™
technology.
You
can find out more about Ultraflex
Systems.
Please contact us for answers
to specific questions.
