The main goal of treatment for arthrogryposis is to help your child’s joints move as normally as possible. This means improving their flexibility, their strength and the way their bones line up. For your child’s lower body, the focus is on working with their feet and legs so they may be able to stand and walk. For their upper body, the focus is on working with their hands and arms so they may be able to do things on their own.
Along with this, your child’s healthcare team – and your family – will do activities to build your child’s skills. No matter how much (or little) your child’s joints move, most likely they will be able to do a lot for themselves, if they are taught how.
Arthrogryposis Treatment Options
Physical and occupational therapy
Physical therapy and occupational therapy are the main treatments for arthrogryposis. Your child’s therapy will be tailored to their needs and abilities. Therapy starts right after birth. Parents and caregivers play an important role by doing daily therapy at home.
- Physical therapists (PTs) use stretches and exercises to increase your child’s range of motion and muscle strength so they can move better.
- PTs also work with your child to improve their gross motor skills. This includes finding ways for your child to roll, sit, crawl, stand, walk and play.
- If a wheelchair, walker or other device might help your child be more mobile, PTs suggest these devices and teach your child how to use them.
- Occupational therapists (OTs) teach your child skills to take care of themselves (such as how to eat and how to get dressed) and ways to move around (such as how to get out of a chair and how to use crutches).
- They also work with your child to develop fine motor skills, such as writing.
- Many tools (adaptive devices) may help your child do things on their own. OTs suggest these tools and teach your child how to use them.
Splints and casts
Splints and casts are rigid supports that go around a joint to hold it in place. PTs and OTs use splints and casts as part of therapy. These supports can help line up your child’s bones so your child can move better. Splints and casts also help keep joints stretched, and they can improve or prevent contractures.
Your child may need different splints or casts at different times. Some splints are worn only at night. Often children go through a series of splints or casts that are changed as their range of motion changes. Your child’s team will teach you how to work with splints and casts during daily activities, such as doing your child’s therapy exercises at home or getting your child dressed.
As your child grows, their muscles, tendons and other soft tissues around their joints might not lengthen at the same rate. This can cause contractures to come back. Most likely your child will need ongoing therapy to deal with issues like this that happen as they grow.
Your child’s team may also recommend surgery. In most cases, surgery is done after a child improves as much as possible with physical and occupational therapy. Often it’s done when the child is older. But it may be done at any age based on what your child needs.
Children with arthrogryposis need an expert team for surgery. Their surgeons must know how to plan the order of their surgeries to get the best results. Their anesthesiologists must know to handle special issues, such as how to intubate a child who has problems with their jaw or airway. Talk with your child’s team about the benefits and risks of surgery and what results to expect.
Types of surgery for arthrogryposis include:
- Surgery to cut into or through bone (osteotomy) to improve how joints line up. Surgeons may shorten or lengthen a bone or change its position.
- Surgery to lengthen or release muscles or tendons that prevent a joint from moving well.
- Surgery to cut through a joint capsule (capsulotomy), if the capsule restricts movement.
- Surgery for scoliosis, clubfoot or hip dysplasia.
Other types of care
Arthrogryposis affects each child in different ways, so your child may need other types of care, too. For example, some children need speech therapy. This can help them learn to speak more clearly if their muscles used for speech are weak or if the feeling inside their mouth is not typical. Some children need a gastrostomy tube or a tracheotomy if jaw, mouth or throat problems make it hard for them to eat or breathe. Some families work with a dietitian to make sure their child gets good nutrition. Your child’s team will put together a complete plan based on your child’s needs.