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 firstname.lastname@example.org.
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.
First Response to a New Diagnosis –
who or what might help?
Families faced with a new diagnosis feel a wide range of emotions, but one of the strongest is the desire to help their child as much as possible. There are two things you can begin doing immediately to help your child:
- Build strong relationships with caring physicians. All forms of Niemann-Pick Disease are extremely variable in symptoms and progression. Each child may have different symptoms and unique reactions to treatment. Families can often see changes in their child before medical professionals who see them only periodically. Identify a doctor or specialist who is responsive to your concerns. The sooner symptoms are treated and side effects minimized, the better the results. (See Summer 2007 Family Support Supplement for extended discussion here).
- Begin raising funds for research. Research is essential to finding effective treatments and a cure. As one parent said, “When I first got the diagnosis, I was lost and angry. I needed some way to fight this disease. Fundraising was how I could fight back.” Review our Donors and Fundraising sections for more information about fundraising.
There is currently no cure for any of the forms of Niemann-Pick Disease, but research continues to move toward effective targeted therapies. In the meantime, prompt symptomatic and supportive treatments will help maintain a higher quality of life. Many doctors, therapists, and specialists may be involved at different stages of the disease.
Pediatrician, Internist or Family Practitioner
- Symptomatic treatment
- “Normal” illnesses
- Seizure medications
- Cataplexy medications
- Neurological assessments
- Subspecialty management of directed therapies (when available)
Physical therapist, occupational therapist, and/or
- Walking and balance
- Motor skills
- Dietary advice
- Special foods when swallowing is difficult
Swallowing therapist, Pulmonologist and/or respiratory therapist,
- Feeding tube
- Irritable Bowel/Crohn disease
- Bone mass assessments (when a wheelchair is used)
Psychologist and/or social worker
- Local, State and Federal resources
Speech therapist, Education and/or IEP specialist,
- Massage therapy
National Family Caregivers Association (and Take Care! Newsletter) www.thefamilycaregiver.org