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Hydranencephaly
Information

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Resources in caring for a Child with Hydranencephaly

Physical Care of a Child with Hydranencephaly

Health Conditions

Prenatal Diagnosis

For Grieving Families

Difficult Times Pt. 1: Taking Care of You

Difficult Times: Pt 2: What If?

Contact a Family

Book: Caring for Your Child With Hydranencephaly

Hydranencephaly data base

Printed Materials

Fact Sheet

Fact Sheet Brochure

Frequently Asked Questions

FAQ Brochure # 1

FAQ Brochure # 2

FAQ Brochure # 3

FAQ Brochure # 4

FAQ Brochure # 5

FAQ Brochure # 6

FAQ Brochure # 7

Myths about Hydranencephaly

Dear Doctor Letter

Practical Care of a Child With Hydranencephaly:
Transportation

This is a big issue for families.

Special Needs Transportation
Children with Special Health Care Needs
http://www.preventinjury.org/SNTrestraints.asp

This article gives a good overview of the different options in transporting your child.

Here are some of the car seats available for children with special needs


Carrie Car Seat by Tumbleforms http://www.adaptivemall.com/safetycarseats.html You can also buy a frame for this seat that can be used as a stroller.	Columbia Car Seat http://www.adaptivemall.com/colcarseat1.html Kayda had this seat. It didn’t provide her any support and allowed her head to tip back too far.

Gorilla Car Seat http://www.showeryourbaby.com/snsegospneca.html It appears that this seat is no longer made. I believe it was a favorite for many of the families.	Special Tomato MPS Car Seat: http://www.adaptivemall.com/sptompscarse.html This seat is brand new and looks like it might be a good option for children with hydranencephaly

Britax Traveller Plus http://www.adaptivemall.com/brtrpl.html Families like this seat.

Guidelines For Safely Transporting Wheelchair Users
http://www.wheelchairnet.org/WCN_WCU/Departments/Docs/Snell.html
by Mary Ann Snell, OT(C)

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: 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