NNPDF Parent to Parent: Rashes

What can I do about my child's rashes?

From NNPDF Newsletter articles and family interviews.
This page is not intended as medical advice.
Consult with your physician before undertaking any treatment or therapy.

Rashes among children with Niemann-Pick Type C can be difficult to treat. Reports from families indicate the most common types of rash are: those caused by excessive moisture (in the diaper area or related to a g-tube or trach opening) and those caused by excessive dryness of the skin. Rashes on the face, torso, and limbs have been described as looking like eczma, chicken pox, cholesterol pockets, and hair follicle bumps. Rashes may also be an allergic reaction to foods or ingredients in certain products.

Rashes caused by excessive moisture are generally temporary and will disappear once the area is kept dry. Rashes due to dry skin or allergies may continue a long time. Treatments that eliminate itching and discomfort should be used when the underlying cause of the rash cannot be treated.

There is no medical evidence that the rashes are directly caused by NPC. However, the medications, therapies, and supportive aids used in treating Niemann-Pick Type C may trigger rashes. Families who have faced this problem have suggested the following:

Over the counter or home treatments.

Boudreaux's Butt Paste works in the diaper area and where there is constant moisture. Available at WalMart, Target, or your local drug store (or visit the website). Parents have reported excellent results in handling difficult moisture related rashes.
Homemade Butt Paste. Mix 1 oz of Clotrimazole Cream (USP 1%), 1 oz tube of Hydrocortisone Cream (USP 1%), and 1 oz tube of Zinc Oxide Ointment with 3 to 4 shakes of Stomahesive Protective Power to thicken.
Oxygen to dry the diaper area or leave the diaper off for extended periods (if that is possible).
Aloe Vestra
Cornstarch or Potato Starch. The Potato Starch is said to work better than the Cornstarch.
Maalox, for moist areas
Eucerin, for dry skin
Lubiderm, for dry skin

Prescription treatments

Bactroban, an antibiotic
Nystop, nystatin powder
Mycelex
Steroid cream

For allergies or extreme sensitivities

Vita-mint toothpaste
Alba Botanica, body lotion (original unscented bottle)
Dr. Bronner's baby wash soap

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