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Answers To Your Questions

About The FirstFlex Treatment Program For Children With Spastic Hemiplegia (Hemiparesis)



Hanna sleeping with her brace
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.

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