Adapting to Life with Perthes
Occupational therapists (OT) and occupational therapy assistants (OTA) help people participate in the things they want to do and the tasks they need to do. Continuing everyday activities (referred to as occupations) is a comfort during the disease process as it allows a person to maintain independence and keep doing the things that make them feel like themselves. Anyone who has ever met a 4-9 year old can attest to the importance of independence in childhood! Accomplishing these acts of daily living for children and adolescents makes OT an important part of the treatment plan for Perthes.
A diagnosis of Perthes disease can be overwhelming. As time progresses, needs may change based on treatment recommended by your pediatric orthopedic surgeon. Legg Calve Perthes Foundation recommends consulting with your medical-surgical team, including an occupational therapist for specific recommendations.
Throughout the disease process, take note of any activity that may need adaptation. This might include equipment needs such as
- Showering/Bathing Equipment
There may also be environmental adaptations to consider at home and school. At home, think of the bathroom set-up. Can your child manage with sufficient space and support equipment? Does the home support independence with necessary equipment? Is there sufficient space for a wheelchair to maneuver; is your child’s bedroom upstairs?
Similar questions will arise regarding school. How will your child get to and from school? Will the school support your child’s medical needs?
Needs Based on Treatment
During early disease, weight bearing restrictions may be indicated without casting. Equipment needs in this phase may be a wheelchair, crutches, a walker, and adaptive equipment for showering or bathing such as a chair. Consider how these adaptions impact the school day to ensure your child is supported at school. Things to think about are access and ease of using the restroom, showering and locker room restrictions.
If a Petrie or Spica cast is recommended, consider adaptations to the wheelchair itself such as an abduction board which supports your child’s legs in the wheelchair. A walker may be useful. A Petrie cast brings some toileting challenges. A bedside commode with drop arms is helpful.
Adaptive clothing is also important. Pull on shorts, pants, etc. will need to be adapted or substituted for adaptive clothing. These items can be purchased, or you may adapt items yourself by cutting and sewing clothing to accommodate the base of the Petrie cast or bilateral Spica. To modify a clothing item, cut along the sides and install Velcro or snaps to the sides. This way the clothing can worn around the cast.
There are environmental considerations to think about with a cast also. Both Petrie and Spica casts hold the legs in abduction, or wide spread. Consider the rooms and places your child spends most of his or her time. Are the doorways wide enough? If your child will be attending school in a cast, consider the safety of your child getting to and from school. Will the family car accommodate the cast?
While a Spica cast requires many of the same accommodations as the Petrie cast, there are a few things to consider specifically. A reclining wheelchair is helpful in addition to the abduction board. Safe transportation may require a bench seat; getting in and out of vehicles may be difficult.
Unfortunately, cost and insurance coverage is very individualistic. Contact your insurance company directly to understand your specific benefits. Some insurance companies require specific criteria to be met. The best way to ensure these are met is to communicate with your insurance company, and your medical-surgical team including an OT who can conduct a formal evaluation of your child’s needs.
Adaptive equipment can also be purchased out of pocket. Shop around to ensure the price and the equipment specifics are right for your child. Abduction boards and adaptive clothing can be made, if you are handy! If your family vehicle won’t accommodate a cast, renting a van is an option, or consider trading cars with friend who has a minivan, or contacting a church or other organization in your community with a van and work out a trade!
There are additional funding resources out there through grants, discounts, and other programs. We’ve included some information on established programs below, however, it’s important to note LCPF does not specifically endorse any one program or organization.
- Miracle Flights – free flights on Southwest Airlines
- Angel Flight – shorter distances on small aircraft (not ideal for casts)
- Ronald McDonald House – affordable lodging for medical appointments away from home
- First Hand Foundation – funds therapies, medicine, travel, car rental and more
- Habitat for Humanity – builds ramps
As you can see, creativity and community can be just what is necessary to make life with Perthes work. Consider adaptations you, the parent(s), will make too! Perhaps you have to drive your child to and from school while in a cast; you might need to adjust your work hours. Treatments and doctor visits will likely require time away from your career, especially if there is travel involved. Discuss flexible work hours and location (work from home) with your employer if possible. Additionally consider a shared leave program at work; if there’s not one, talk with your employer and consider starting one! Use those reward points! Consider using rewards points from a credit card or loyalty program to help offset travel or other costs. Ask your friends about donating their reward points too.
Content adapted from: Perthes Parent Conference, Texas Scottish Rite Hospital for Children, 2017.