“When our child was born, and we were trying various creams and lotions, the best guidance I remember receiving was from a NICU nurse, to try products that come in a “tub” as they will be more moisturizing than a standard lotion.” FIRST Parent, Camilla Strickler

Applying creams, multiple times a day, can be a bit challenging with a fussy infant. But soon you will find a routine that works for both you and your child. You will want to set up a convenient, colorful, and well-lit area in your home. At first, you may need to coat your baby at every feeding and/or diaper change. With time, though, you will learn by experience what your child’s skin needs. Remember, everybody’s skin, whether they are affected with ichthyosis or not, is a little different.

Warm and soothing - Babies will often react better to warmed cream or lotion, as opposed to cold lotion. Try rubbing a scoop full between your hands before applying the cream or lotion on your baby.  Or, try putting the tightly closed container in the warm bath water while you bathe him or her; the lotion will be warm when the bath is done.  Next, moisturize the rest of the child’s body.

“We placed our infant on a heating pad to help with the warm and soothing experience.  We were very careful to select a heating pad that didn’t get too hot.” – FIRST Parent, Camilla Strickler

Gentle massage - Rub the lotion or cream in well, gently massaging your baby as you go. This can be a nice time for telling stories, singing songs, or just talking to your baby. It is a special way to bond and special time alone with your child.

Keep skin soft, supple and well lubricated - Some of the most effective agents to remove larger scales include alpha-hydroxy acids, such as lactic or glycolic acid. However, alph-hydroxy acids can sting and that they need to be kept away from open wounds, cuts or cracks, and may not be ideal for infants. Some products containing these ingredients are available by prescription, although many over-the-counter products contain them as well. Remember, though, sometimes it is better not to try to remove the scale from skin that is more flakey than scaley, but just to keep the skin supple and well lubricated.  Glycerin, urea, and propylene glycol are other effective ingredients that attract water (called humectants) and work well on severely dry skin. Glycerin alone can be purchased from any pharmacy; you can add it to your favorite lotion to help the skin stay moist longer.  Skin barrier repair formulas containing ceramides or cholesterol may also improve scaling.

Ask your dermatologists about active ingredients - Use your dermatologist’s guidance, but at the same time begin learning the active ingredients in the creams and lotions you use. Although there is a dizzying array of topical products available for purchase over the counter, most, you will find, are composed of a relatively small number of key ingredients. At the same time, prices vary considerably, even among remarkably similar products,

Apply creams immediately after bathing - Often, a heavier cream, which forms a barrier, is helpful to seal in moisture once you have applied. Again, these are most effective when applied immediately 2 to 4 minutes after getting out of a bath.  Many heavier creams, or occlusives, contain a petrolatum or mineral oil base.  Lotions, although easiest to apply, are often relatively ineffective at holding moisture in the skin.

Keep it Positive, Fun – In addition to bonding with your baby, cream time should be a pleasant and positive experience.  Music, bubbles, funny faces, talking with a warm tone all can add to the experience.  Since the cream time will be a life-long routine, it’s extra important to make this a pleasant experience as an infant and during the formative years.

Know the risks & work with dermatologist to establish treatment - Some products (particularly the alpha-hydroxy acid lotions and creams) may cause stinging or mild irritation especially in small children, so it is wise to discuss their use with your dermatologist. Avoid applying these to areas where the skin is cracked or raw.  Please also keep in mind, there is a theoretical risk of systemic (internal) lactic acidosis (accumulation of lactic acid in the blood above normal levels), particularly in infants. Again, work closely with your dermatologist in determining your child’s treatment regimen and sure to develop a plan that works for the whole family.

Tele-ichthyosis - Since ichthyosis is a rare condition, sometimes your healthcare practitioner will need guidance from ichthyosis medical experts. Remember that FIRST has a Tele-ichthyosis portal, where medical staff can upload questions and photos and an ichthyosis expert will respond as soon as possible. If it is an urgent matter please call the FIRST office and we will reach out to a member of FIRST's MSAB.

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The information on these pages has been provided through the generosity of the Ace in the Hole Foundation.

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors nor Foundation staff and officials and sponsoring foundations endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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