Positioning and Equipment
 

Orthotics and Splints

This section is about positioning your child to prevent deformities and increase their abilities to use their bodies and to improve their comfort. Where possible I’ve used pictures of children with Hydranencephaly and their experiences with each of the types of equipment.

Equipment: Orthotics, Splints

Another tool used in preventing deformities in a child with Hydranencephaly is sustained positioning using splints or braces. There are a number of different types of orthotics & braces commonly used for our children. 

AFOs 
The most common brace used is the Ankle Foot Orthotic (AFOs)

Here is the link to the information on care of AFOs which is in the book "Caring For Your Child With Hydranencephaly"

Ankle Foot Orthosis Care
http://www.cincinnatichildrens.org/health/info/orthopaedics/home/ankle-foot-orthosis.htm

TLSO Body Jacket
This type of brace is worn by some of the children to prevent or control scoliosis. There are a variety of different materials used in making back braces.

 In the following pictures Chrissy is wearing her new back brace. It is normally worn under her clothes.

A brace such as this is prescribed by a physician and then custom made by an orthotist or orthotic company.

Kayda is wearing a different style of body brace (note that the 2 children live thousands of miles apart and these braces were made over 6 years apart and they have the same design on the plastic. Up until she got this brace all of her other braces were very similar to Chrissy’s. We chose this design to accommodate her growing breasts and also because she was tending to hunch forward too much with just regular straps in her wheelchair. The brace took the place of straps on her chair. At first I just made a poncho to go over it as it was pretty tight but eventually I figured out that a jacket was ok under it.

Another type of back brace that may be used is called a Benik Brace: http://www.benik.com/pediatrics.html Here is a picture of Heather wearing a Benik Brace:

 This type of brace isn’t suitable for a child who is really stiff in their upper body or who has a bad scoliosis or kyphosis.

Care and Use Guide for a TLSO
http://www.plattners.com/tlso.shtml 

Other splints that may be recommended or used for a child with Hydranencephaly:

Hand Splints/braces:

Here are some addresses of companies that make other splints:     
http://www.comfysplints.com/pediatric-splints.htm arm & hand splints
http://www.benik.com/pediatrics.html Benik makes a number of different soft splints that have been used by children with Hydranencephaly. Mostly thumb splints and back braces.
http://www.medi-kid.com/ they make bright cheery splints for various parts of the body. 

 
Kayda wearing her leg splints from the Medi Kids company

Some children also use a neck brace. The Headmaster collar seems to be a popular one

TheraTogs

A few of the children use TheraTogs to help them with therapy. They are similar to the above splints but are just used in therapy to provide extra strength and support and sensory input.

Here is a picture of Chrissy having therapy wearing her TheraTogs.

Here is some basic information on TheraTogs

TheraTog FAQ
 http://www.theratogs.com/faq.html

Personal Experiences of Families with TheraTogs
From Angela, mom to Chrissy, age 4: The TheraTogs really aren't supportive enough to wear as a full time brace. They are made to be worn by less severely affected children for longer periods of time, but for our kids I think the main use would be fore extra support during therapy. We use Chrissy's when we are working on her sitting up, just to give her that extra sensory input to position correctly. She is too spastic for them to work as a brace by themselves.

Stephen (Spina Bifida) wears them for longer periods of time to position his legs when we want him up on his knees to try and crawl. He also wears them when he is in his stander to help position him. But he is much different tone wise than Chrissy. He is very floppy and the TheraTogs keep him in alignment and in the correct position.

From Diana, Grandmother to Kirsten, age 2 1/2: We use TheraTogs for Kirsten. They are great for giving her enough sensory response to improve her activity level. She does better during the day while she has it on and when we take it off she notices the difference too and does much more stretching on her own. I think they have their place in addition to braces and should be discussed.

Other pages in this section:
Cerebral Palsy
Orthopedic Considerations
Medical Treatments for Spasticity
Orthopedic Surgery links and resources
Orthopedic Surgery Personal Experiences
Therapy for children with Hydranencephaly
Range of Motion Therapy
Other Types of Therapy
Principals of Positioning
Orthotics and Splints Experiences
Equipment
Wheelchairs
Alternate Positioning
Standers
Personal Care: Practical Information
Practical Care: Transportation
Practical Care: Carrying and Lifting
Sleeping Medications
Glossary