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Care Giving Tips

Introduction

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 nnpdf@idcnet.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:

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:

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

Neurologist

Metabolic/Biochemical Geneticist

Physical therapist, occupational therapist, and/or rehabilitation therapist

Nutritionist/Dietitian

Swallowing therapist, Pulmonologist and/or respiratory therapist, Gastroenterologist

Orthopedist/Orthotist

Psychologist and/or social worker

Speech therapist, Education and/or IEP specialist, Supportive treatment

National Family Caregivers Association  (and Take Care! Newsletter)   www.thefamilycaregiver.org

[June 30, 2010 mem]

The National Niemann-Pick Disease Foundation (NNPDF) does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. This site is an educational service of the National Niemann-Pick Disease Foundation and is not meant to provide diagnostic or treatment advice. Information contained or suggested on this Web site does not constitute medical advice. For all information related to care, medication or treatment, the NNPDF recommends consulting a physician to determine if information presented is applicable. Please review these additional cautions about medical information provided on the Internet.