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Care Giving Tips
INTRODUCTION
There is a wealth of literature available in print and on line about caregiving 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 or directly to our Coordinator of Education, Referral and Advocacy at catherine.walshvockley@chp.edu.
At the following linked 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.
ITEM #1: 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 at http://www.nnpdf.org/familyservices_04.html)
* Begin raising funds for research. As one parent said, "When I first got the diagnosis, I was lost and angry. I needed some way to fight this disease. Fund raising was how I could fight back." Review our Donor Information section from the main menu bar on the home page for more information about fund raising.
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 mean time, prompt symptomatic and supportive treatments do maintain a higher quality of life. Many doctors, therapists, and specialists may be involved at different stages of the disease. Cate Walsh-Vockley, National NP Coordinator, can provide guidance to you and your doctors about possible treatment options.
Pediatrician, Internist or Family Practitioner
• Symptomatic treatment
• "Normal" illnesses
Neurologist
• Seizure medications
• Cataplexy medications
• Neurological assessments
Metabolic/Biochemical Geneticist
• Subspecialty management of directed therapies (when available)
Physical therapist, occupational therapist, and/or rehabilitation therapist
• Walking and balance
• Motor skills
• Posturing
Nutritionist/Dietitian
• Dietary advice
• Special foods when swallowing is difficult
• Supplements
Swallowing therapist
Pulmonologist and/or respiratory therapist
Gastroenterologist
• Feeding tube
• Irritable Bowel/Crohn disease
Orthopedist/Orthotist
• Bone mass assessments (when a wheelchair is used)
• Bracing
Psychologist and/or social worker
• Dementia
• Local, State and Federal resources
Speech therapist
Education and/or IEP specialist
Supportive treatment
• Feldenkrais
• Massage therapy
• Other
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