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Myths about Hydranencephaly

Myths Brochure

Dear Doctor Letter

Equipment

It won't be very long after you find out that your child has Hydranencephaly before you are faced with a whole lot of different pieces of equipment. Your child's therapist will help you figure out what is needed for your child at a particular time. In this section are links to information on choosing equipment, as well as links to direct information on the various pieces of equipment that are available.

Links to Equipment Information:

So You’re Getting a Piece of Equipment
http://www.novita.org.au/library/Factsheet_so_youre_getting_a_new_piece_of%20_equip(1).pdf

Choosing a Wheelchair: It Takes Teamwork by Richard Robinson
http://www.mdausa.org/publications/Quest/q42wheel.html

Tips from Families on choosing equipment for a child with Hydranencephaly

Choosing a wheelchair:
1. Tilt in space
2. Able to be adjusted for growth
3. Will fit in what space you have; ie; be able to fold up if you have a small vehicle
4. Have accessories such as sun shades or umbrellas
5.  Weight of chair, especially if it will be a long time before you get a lift on your vehicle
6.  Tray to put toys on and to support arms
7.  Able to be tied down for transportation on bus or in van

Tips in Choosing a bed:
1. Height adjustable to save your back
2. Foot and head of bed can be raised
3. Solid side rails

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
Positioning: Orthotics and Splints
Orthotics and Splints Experiences

Equipment
Wheelchairs
Alternate Positioning
Standers

Personal Care: Practical Information
Practical Care: Transportation
Practical Care: Carrying and Lifting
Sleeping Medications

Glossary

 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca