How Can I Help My Child?

(Parent to Parent)

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. Niemann-Pick Disease is extremely variable in its symptoms and progression. Each child has different symptoms and unique reactions to treatment. Families can often see changes in their child before medical professionals. If a doctor or specialist is not responsive to your concerns, find one who is responsive. The quicker that symptoms are treated and side effects eliminated, the better the results.
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 donations page for more information about fund raising.

There is no cure for Niemann-Pick but aggressive 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.

Internist or family practitioner
- Symptomatic treatment
- "Normal" illnesses
Neurologist
- Seizure medications
- Cataplexy medications
- Neurological assessments
Physical therapist, occupational therapist, and/or rehabilitation therapist
- Walking and balance
- Motor skills
- Posturing
Nutritionist
- Dietary advice
- Special foods when swallowing is difficult
- Supplements

Swallowing therapist
Pulmonologist and/or respiratory therapist
Geneticist
Gastroenterologist
- Feeding tube
Osteopath
- Bone mass assessments (when a wheelchair is used)
Psychologist and/or social worker
- Dementia
Speech therapist
Education and/or IEP specialist
Supportive treatment
- Feldenkrais
- Massage therapy

These following pages are a compilation of advice, tips, and experiences provided by parents, researchers, and doctors. They show options which 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.

What is a seizure?

What is cataplexy?

What is CoQ10 (coenzyme 10)?

Should my child have a feeding tube?

Why is my child having respiratory problems?

Why is my child stiff and inflexible?

What can I do about rashes?

How do my other children feel?

What about my child's education?

Do you have an experience that you would like to share? Send us your comments.

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