Ichthyosis is different from person to person. Two people with the same type of ichthyosis may have different expressions of the condition and response to the similar treatments may vary as well. What works well for one person may not work well for another. For example, a lotion that works wonderfully for someone may be ineffective or harmful for your child. Consult with your dermatologist and pediatrician for updated information. Also make a good connection with local pharmacist who will keep you informed about new products, place special orders or offer discounts. In course of time, you will be a master of taking care of yourself or your child. You can also develop homemade lotion recipe by consulting with doctors & patient support groups.

(Create sections for each activity.

Must have items :

1. Before Shower.

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Why its important.

What steps to take, important steps to be bold and big

What options are there local and home made

What to do if any side effects are there

Need more info : reach out to :

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2. During Shower

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Why its important.

What steps to take, important steps to be bold and big

What options are there local and home made ( links, names of some products, who should not use it , any special instructions

What to do if any side effects are there

Need more info : reach out to :

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3. After Shower
4. During the day
5. Winter care
6. Summer care
7. For child care
8. For Adults
9. Clothing tips
10. Special condition and take tips

Sports, special things to avoid in meals etc.

11. Travelling tips and things to carry.

Medicines, lotions, clothes, special first aid things etc .

• Products containing glycerine, urea, alpha-hydroxy acid, ceramide, vitamin E, petroleum jelly, paraffin (light liquid or white soft), olive oil (plain or extra virgin), coconut oil, jojoba oil, mustard oil seem to help individuals with ichthyosis. Some people get relief from pure lanolin, which is easier to spread when mixed with water. Some products containing these ingredients are available by prescription, although many over-the-counter products contain them as well. You can also place special orders to a good pharmacist nearby. You can make your own moisture mixture: Petroleum Jelly + Urea 10%- 20% + Soft Paraffin + Glycerin (small amount)
• Applying lotion and creams to wet skin works better than putting them on dry skin. The lotion traps the moisture. Putting glycerin on wet skin prior to applying lotion also works good as the lotion stays longer.
• Try adding a few ounces of pure glycerin or vegetable glycerin to your cream or lotion, and the skin will stay moist longer. Glycerin bought by the gallon is less expensive than smaller bottles.
• After you buy a new cream or lotion, give it a reasonable trial. Sometimes a product needs to be used for two or three weeks before results are noticeable. It is safe to test the cream or lotion on a limited area of skin, like an arm or a leg. If it’s effective, doesn’t cause the skin to blister, itch, peel, or dry out then apply on whole body.
• Alpha-hydroxy acid products may sting or cause mild irritation in small children, so it is wise to talk to doctors prior application. Avoid applying these to areas where the skin is raw. Petroleum jelly works good on cracked skin.
• Avoid heavily perfumed products as those can cause skin irritation. Instead, a few drops of an essential oil to a cream can do wonders for the smell.
• In cold seasons, you can put warmed cream or lotion on your child’s skin. Try rubbing a scoop full between your hands before applying the cream or lotion 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.
• A pumice stone rubbed lightly on thickened skin may help loosen crust. Try this when the skin is wet and soft. You can also use natural loofah sponge which is cheap & effective. Soak the loofah in water to soften & use for scrubbing after you buy it from market. Shower gloves are also available in body shops.
• To remove scales on the scalp, apply your favorite lotion and occlude with a shower cap or plastic wrap to bed. A morning shampoo, massage and brushing with fine toothed comb may help. You can use mild strength shampoo, baby shampoo or pears/dove body wash to wash hair once or twice in a week. You can use a nourishing conditioner after hair wash. After washing & soaking hair with towel when the scalp is moist, spray glycerin & rose water on head. Scalp will stay moisturized. Try to look for hair care brands with high levels of natural ingredients. Avoid drying products, and products containing non water-soluble ingredients such as silicones. These can build up scales & shield off moisture even more. Sulfate free shampoos are better option in that case.
• Be careful not to braid or twist the hair too tight, to avoid disrupting the hair growth.
• Body odor can be a problem for people with ichthyosis. It happens when bacteria is trapped in the dead layers of skin. Regular bathing is helpful. Adding two teaspoons of bleach or vinegar to one gallon of bath water may help.
• Bacterial infections can be a problem for some people with ichthyosis. Some individuals suggest adding two TEASPOONS of Clorox to one gallon of bath water. Carefully measure each gallon of water as you fill your tub and then mark the tub so that you can always fill with the same amount. For example, add 30 teaspoons of Clorox to 15 gallons of water.
• More baths are better. Water helps make dry skin easier to remove and makes people with ichthyosis more comfortable. Moisturizing soap- DOVE, NIVEA, PEARS, OLAY, GOAT’S MILK SOAP are commonly used & available in market. Everyday use of soap will make the skin rough so better to use every alternate day or twice/thrice in a week. Some people find salt, besan, oatmeal, baking soda baths soothing. Be sure to apply lotion or cream immediately after gently pat the skin with towel. Don’t rub the skin with towel as rubbing will remove all the moisture & lotions will be not soaked effectively. You can find sugar scrub, apricot/walnut scrub, charcoal scrub products in supermarket to scrub off the scales while bathing. Some types of ichthyosis respond better to the steam in a comfortably warm shower than to complete immersion in a bath.
• If you have problems with yeast infections in the groin area or feet, wear cotton underwear and cotton socks. Have your dermatologist prescribe the appropriate prescription medication for yeast or fungal infections. These problems need medical attention.
• Thick scale can sometimes harbor so much infection, causing bad odors, that an oral antibiotic may be needed. Some people remain on low doses of antibiotics for long periods to control infection.
• If you need to apply bandages, ask your pharmacist about some of the newest no-stick types.
• Retinoids, a prescription oral medication, have provided some patients with dramatic improvement. These drugs need to be closely monitored by your doctor as there are serious side effects.
• Ear canals can be a problem when they become clogged with skin and wax. Check your child’s hearing routinely by an ear, nose and throat specialist for ways to properly clean the ears.
• If you have mild or severe cases of ectropion, apply Vaseline couple of times around the eye so that the eyelids becomes soft & eyes can be closed easily. Artificial tears, ocular lubricants & topical retinoids are also used to lubricate the eyes adequately but should be used after consulting with an eye specialist.
• Natural fibers, such as wool or cotton, tend to wick moisture away from the body. You might consider cotton blends for clothing worn next to the skin. Some people with ichthyosis find rayon and other synthetics to be very irritating.
• Air conditioning and heating can be very drying, especially for small children. Fresh air, fans and humidifiers may prove to be more comfortable.
• Children and adults who cannot tolerate heat can try cooling suits and devices.
• Itching is a common problem. The best way to reduce itching is to maintain a daily routine of bathing along with moisturizing. Avoid scratching directly with fingernails as it will make skin raw & there is a chance of infection. Rub with the flat surface of fingers instead of that. You can wear cotton hand gloves also while sleeping.
• Sunshine can work wonders for ichthyosis, but too much sun is dangerous. Always use a good sunscreen on the exposed part of the body 30 minutes before going outdoors. To ensure maximum protection, repeat the application every 2 hours after continuous exposure to the sun, after swimming, physical exercise. A good sunscreen has some criteria – broad spectrum protection (protects against UVA and UVB rays), SPF 30 or higher, water resistant, hypoallergenic & non-comedogenic.
• Some cosmetics can conceal skin problems such as excessive redness. Check with your local department store for special cosmetics.
• Diet has huge impact on skin. Make sure to eat clean nutritious balanced diet everyday. Drink plenty of water (minimum 2 litre/ 8-10 glasses), avoid junk foods & carbonated beverages, alcohol & smoking.
• Stress has adverse effects on skin. It aggravates skin problems. Impacts of stress can be reduced by certain techniques – adequate sleep (7-8 hrs), regular physical exercises, swimming, cycling, breathing exercises, yoga, meditation, indulging in hobbies, joining support groups or taking help from a professional therapist.
• A thorough physical checkup should be done at least once in a year which includes – Complete Blood Count with Differential, Metabolic functions of liver & kidney (blood sugar, electrolytes, albumin), Thyroid function test, Iron profile, Lipid profile, Specific Nutrient such as Calcium & Vitamin-D level in blood. Imaging tests like ultrasonography, bone scan, X-ray can be done if the physician advises.
• Home Remedies:

1. Hair Care: Soak a towel in a bowl of hot water for few minutes. Then squeeze the towel to remove water, hold both ends of the towel & wrap the hot towel around the head & leave it for 10 minutes. You can also apply warm oil on hair & scalp then do the hot towel treatment. It opens the pores on scalp & thereby helps reducing the scales & itching. Quality of hair also improves.
2. Skin Care: Take half teaspoonful of sugar, add few drops of milk/coconut oil/curd & mix. Apply the mixture on damp skin of face, neck & body & leave it for few minutes, then rub slowly & gently so that the scales come off. Then wash with normal water. You can rub a little grated potato with curd on skin to remove the scales too.

Sandalwood powder, besan (pulse powder), rice flour, multani mitti are also beneficial when applied as a paste.

Another trick is to take 2 egg whites, whisk it with olive oil, pour in a bottle & store in refrigerator (the mixture lasts for 1 week if refrigerate). Apply this mixture everyday night on skin before sleeping. Wash skin with water in the next morning when you wake up. This reduces wrinkles & fine lines.

BATHING

Why bathing is essential?

In Ichthyosis the body’s ability to produce the outermost layer of skin, the stratum corneum, is defective. So there is traffic jam of cells on the skin’s surface which causes scaly skin.

The goal in treating the primary symptoms of ichthyosis is promoting exfoliation (normal shedding) of the skin’s outermost layer. Bathing is important to the shedding process. It not only cleanses skin of dirt and other external debris, it completes the natural process of desquamation, sweeping away dead epidermal cells.

For some form of ichthyosis affected people, frequent bathing is extremely important, as it is not only the best way, but the most natural way to remove dry scales and skin, and most importantly, more frequent bathing can ease the distress of ichthyosis, making day to day life much more comfortable.

Following bathing recipes can be used in a tub filled with one-third of water & soak the skin for 30 mins to an hour, as per your need. These baths should be followed by application of an emollient.

• Salt Bath : The aim is to produce 3% solution which is less than the amount of sodium chloride in the ocean. This equals 1/4 pound per gallon of water – or 5 lbs in 20 gallons or 7.5 pounds in 30 gallons. Less salt may work for some, if you soak for at least an hour. This is safe to use every day. You can add pool salt to your pool too.
• Baking Soda Bath: The aim is to have a pH of 7.9. The amount of baking soda to add may vary with the quality (pH) of your tap water. In most cases, adding one-third cup to a tub one-third full with water will raise the pH to 7.9. You can test the water after the baking soda is dissolved with pH indicator paper. You must soak for 45 minutes to one hour before starting to gently slough scale with a washcloth, loofah or other gentle mechanical desquamator. Baking soda baths can be used up to several times a week.
• Antimicrobial Bleach Bath: Measure the amount of water usually put in the tub. Add 10ml (2 teaspoons) of household bleach per gallon – i.e., about 1 cup in a half-full tub (40-50 gallons). Soak for a minimum of 15 minutes – longer if you want to remove more scale. Bleach baths once or twice a week should be adequate to reduce odor and the frequency of infections; daily for one week may be necessary for someone currently infected. Undiluted household bleach is quite irritating so be careful how you handle it.
• Post Bath Emollient: It is important to use an emollient just after bathing. If you have taken an alkaline bath (by using baking soda or bleach) it is a good idea to restore the natural acid pH of the outer layer of skin by using an emollient with a slightly acid pH, such as Lac-Hydrin or AmLactin.

(Ref: Leonard M. Milstone, MD,Yale University )

Pros & Cons of Bleach Baths

Many patients with ichthyosis, despite their best attempts at personal hygiene, become colonized by an overgrowth of bacteria, yeasts, or fungi which results in an unpleasant odor. When these same microbes try to reside on normal skin, they encounter a much thinner, and much more acidic stratum corneum. The pH of normal skin (pH 5.0 – 5.5) resists the growth of many microbes, while selectively encourages colonization by the microbes that normally occupy the niche of the stratum corneum. In contrast to the low pH of normal skin, the pH of ichthyotic stratum corneum rises to pH 6- 7 due to excess scale, inflammation, and a defective barrier. This elevated pH and the thickened stratum corneum favor the overgrowth of many microbes, including not only those that populate normal stratum corneum, but also pathogenic microbes, such as Staphlococcus aureus. In that case, bleach bath helps to:

• Decrease Odor – Bleach baths reduce the amount of odoriferous colonization by potentially pathogenic microbes on the skin surface.
• Decrease Infection – Bleach baths can decrease the risk of infection.

However, there is a second consequence of the elevated pH of ichthyotic skin, and the even more elevated pH of bleach. There are enzymes in the stratum corneum that are more active at an elevated pH, and whose activity can have two important consequences:

• Separation of Cells – First, some of these enzymes degrade the connections that hold the cells of the stratum corneum together, causing these cells to separate from each other, and eventually to be shed from the skin surface. Obviously, for someone who has too thick a stratum corneum, bleach baths could prove to be an advantage. It should be noted, however, that there are no experimental or clinical data proving that bleach promotes desquamation.
• Inflammation – Second, some of the enzymes that are more active at higher pH can provoke inflammation, because they activate and release pro-inflammatory cytokines, proteins that normally are stored inside stratum corneum cells and shed harmlessly. Currently, there are no studies that address whether the slightly alkaline pH of bleach baths increases inflammation in those who have inflamed skin. Surprisingly, there is one study showing that dilute bleach has the ability to reduce inflammation in an animal model of inflamed (not ichthyotic) skin. So in sum, we still have questions about the impact that bleach baths have on inflammation in our patients.

Most of us would agree that, taken together, the benefits of bleach baths in reducing microbial overgrowth, odor and infections far outweigh the uncertainties arising from its slightly alkaline pH. Yet none of us would see any advantage to prolonged exposure to the abnormally high pH of dilute bleach baths for patients with ichthyosis. Instead, it would seem prudent to follow one’s bleach bath with a generous application of a slightly acidic emollient, such as Lac-Hydrin or AmLactin, to help restore the skin’s natural acid mantle.

(Ref: Leonard M. Milstone, MD ,Yale University and Peter M. Elias, MD, UC San Francisco)

Travel Tips for Bathing

Traveling with children who have ichthyosis is challenging particularly when it comes to bathing.

• Bring along a blow up baby tub. It’s easy to pack and you don’t need to use the hotel tub.
• Bring a big Rubbermaid container to pack things, and then use it as a tub as well when you are at your destination.
• Cleaning sponges and bleach wipes could also do the trick for a bath.
• Bring antibacterial wipes with you when you travel. You can use them for cleaning stations and bathtubs.
• Consider switching to showers when traveling and resign yourself to the fact that kids may look a little “rough around the edges” without their same bath routines.

(tips shared by patients for coping with their ichthyosis)

EXFOLIATION

Exfoliation is the act of removing the outer scales from the skin. For those individuals with hyperkeratotic ichthyosis (i.e. thickened skin) exfoliation can make you more comfortable doing day to day activities. And those with CIE, harlequin, or epidermolytic ichthyosis will find exfoliation most beneficial. However, exfoliation, while removing the scale, often brings out the underlying erythema or redness. So you may trade the scale for the redness. This is not an issue if the scale is very bothersome, but it is important to keep in mind if you do not want to be red. In other cases, such as Netherton syndrome, the skin barrier is impaired, and the skin should not be further exfoliated. Exfoliation will only lead to increased sensitivity and irritation in this case.

Tips for Exfoliation:

• After soaking in a tub for an hour or longer, use a wash cloth, pumice stone or loofah brush to gently remove the outer layer.
• After bathing, try using glycerin mixed with petroleum jelly or cream/lotion containing ammonium lactate 10% or 12% (Amylac, Lacsoft), glycolic acid (Glyco-A 6% or 12%), salicylic acid (Salicylix 6% or 12%), paraffin (Cetraben, Aquasoft), urea (Eucerin 10%, Revitaderm 20%), Mixed preparation e.g Moisturex to help soften and exfoliate the outer layer.
• For those with thick scale under their eyes, topical tazarotene (Tazret) or tretinoin cream (Retino-A 0.025% or 0.05%) can loosen the scales and allow their eyelids to close more fully.

(Ref: Dr. John Browning, Chief of Dermatology at Children’s Hospital of San Antonio)

** If the skin is sensitive, or has some areas of open skin, some of the above mentioned products will sting. Consult with your doctor before using any of these products on an infant or child.

• Use baking soda and make a paste which would be considered a mild abrasive to aid in loosening the dead skin.
• Add Vaseline Bath Beads or apple cider vinegar to the bath water to help in softening up the skin before exfoliating.
• You can try sugar scrub, sea salt or rock salt scrub which are available in body shops.
• Moisturizing soaps like dove, olay, nivea, pears etc. can be used to scrub the loose skin off gently with palms or a wash cloth. Soaps rob skin of essential oils, so should be used occasionally. You will learn with experience how much to scrub. Moderation is the key. If too much skin is removed, there will be tender (sometimes very red or even raw) skin beneath. It is especially important not to overdo scrubbing off the scale in babies. If your child is sensitive to soaps, try baking soda or oatmeal bath additives which you will get in grocery store or drugstore. If your baby has raw areas on it’s skin, put petroleum jelly on that area before bath. This will reduce the pain when comes in contact with the bath water. After shower, pat dry the body with towel to keep the skin moist. Immediately apply cream or lotion mixed with glycerin to trap that moisture while you are still in bathroom. How often should you give your child a bath depends on the condition of the skin and the weather. If you live in a climate with dry, cold weather or too hot, you may have to give your child more frequent baths. Ichthyosis becomes worse in dry season. Steam of comfortably warm shower helps to clean skin & remove toxins from the body.
• Let a loofah sponge soak in water for a few days before using, they will eventually soften up.
• When exfoliating areas such as knees, elbows and feet, if it starts to hurt, stop, and continue the next day.
• The salty ocean does wonders for the skin, and works as a natural exfoliant.
• Hydrotherapy, whereby the water and air is circulated throughout the tub, may also be a beneficial way to soften and exfoliate skin.

(tips shared by patients for coping with their ichthyosis)

Dry & itchy scaly scalp is a common problem for ichthyosis affected people. If the scalp care isn’t done properly, it will be the suitable place for rapid growth of microorganisms.

The recommended way to treat scalp scales is to coat the scalp with your favorite lotion or oil to soften the scale, cover with a shower cap or plastic wrap and go to sleep; shampoo in the morning and brush or comb scales out after shampooing. Use a fine-toothed comb to pull up scales. A dog’s flea and tick comb is very fine, or use one made to remove head lice nits.

For children – wrap head in a bandana instead of a shower cap, or cover shower cap with a soft hat that ties under the chin to keep it from sliding around.

Products that may work are Zinc pyrithione, ketoconazole, salicylic acid, tar containing shampoos which are commonly used to remove scalp scale. Consult with your dermatologist before trying them.

• Nizoral Shampoo with 2% ketonazole.
• T-Sal Extra Strength Shampoo, by Neutrogena
• Pantene Anti-dandruff Shampoo
• Selsun Blue Shampoo
• Seborin Anti-dandruff Shampoo
• Mineral oil

** If the scalp is sensitive, or has some areas of open skin, some of these products will sting. Consult with your doctor before using any of these products on an infant or child.