Care Giving Tips
Care Giving Tips
There is a wealth of literature available in print and online about care giving for children who have special needs. Rather than try to recreate the work of many experts, what we hope to do on this page is periodically provide a link to a well-written article or web page about a particular aspect of care giving.
We know that the tips will not always apply to everyone’s situation at a specific time, but hopefully, over time we will accumulate a list of resources that will fill the needs of many families. If there are topics of interest that you would like us to investigate and post, please don’t hesitate to send your request to the Foundation office at email@example.com.
On the following pages, we have also posted a compilation of advice, tips, and experiences provided by parents, researchers, and doctors. They show options that may be helpful. Many of the items were published in the National Niemann-Pick Disease Foundation Newsletter or came from discussions on the NNPDF Mailing List. These pages are for information only – no medical advice is intended. You should consult with your doctor before beginning or ending any treatment. Even the most common medications and supplements can have side effects and drug interactions that are dangerous.
Responses to General Questions about Issues related to NPD:
- What Is A Seizure?
- What Is Cataplexy?
- What Is CoQ10 (coenzyme Q10)?
- What is Curcumin?
- What is Cyclodextrin?
- Seasonal Flu Information
- Access to Investigational Drugs (“Compassionate Use”)
- Considering Experimental Therapies
- Dementia in children, teenagers and young adults (Dementia booklet)
- List of Dementia Resources (Web sites and books)
- Coping with Change: Strategies for Responsive Behaviors (PowerPoint presentation)
- Glossary of Terms — Molecular Biology, Genetics, Clinical Neurology (Liscum-Patterson-Sturley)
- Talking Glossary of Genetic Terms (National Human Genome Research Institute)
- Emergency Preparedness: Filing Instructions for EMTs in Advance of an Emergency
- Pinterest Board with ideas and products to help keep children with decreased mobility or low muscle tone comfy and stimulated.
National Family Caregivers Association (and Take Care! Newsletter) www.thefamilycaregiver.org