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Resources in caring for a Child with Hydranencephaly

Physical Care of a Child with Hydranencephaly

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Difficult Times Pt. 1: Taking Care of You

Difficult Times: Pt 2: What If?

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Book: Caring for Your Child With Hydranencephaly

Hydranencephaly data base




Orthopedic Problems and Surgery
Links and Resources

Warning: This section is much more technical than the rest of the book. A glossary at the end of this section should explain most of the terms mentioned here. You will hear many of these terms as you care for your child.

The following are links to the information which was included in the book "Caring For Your Child With Hydranencephaly"

The Hip In Cerebral Palsy

Prevention of Hip Problems

Hip Varus Osteotomy (VRO)
Derotation Osteotomy
Femoral Osteotomy

Hip augmentation

An alternate surgical procedure: Proximal Femoral Resection
Some of the children just canít withstand the long surgery involved in the above procedures for dislocated hips. Another option is called a Proximal Femoral Resection. In this procedure the top of the femur is cut off; the ball part of the femur. This means that there is no hip joint and thus no pain. It does leave the child with the one leg being very floppy so special care has to be taken with moving and positioning. There is very little information on this procedure on the internet. Itís seen as a last resort surgery. However, a number of families have opted for this procedure rather than having the hip reconstruction. Itís a much shorter surgery and youíre guaranteed that the hip will never dislocate again.

Spinal Problems

Cast Care
If your child has hip or soft tissue surgery (bilateral adductor tenotomy) they will most likely be placed in a cast for 4-6 weeks. Here is some information on caring for the casts they most likely will be in. Itís presented here for your information only. Your childís dr or therapist can give you more specific suggestions.

Home Management of the Child in a Hip Spica Cast

Petrie Cast Care 

Other pages in this section:
Cerebral Palsy
Orthopedic Considerations
Medical Treatments for Spasticity
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

Alternate Positioning

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



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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.

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