Date: 11/11/2020

Teen Tips, Tricks & Advice from FIRST Adult Members

EL  Try Neutrogena T Sal. Lather up for 5 min and use scalp brush. Super thick lather and leaves hair luxurious.

BCS Could she use heavier products at night and then a heavy cream like Deep Comfort by Clinique? Pricey but a little goes a long way. CeraVe would be a second choice especially if it is layered over something like Jergens lotion for dry skin. Aqua Glycolic did wonders for my child. Once a week I would put Aqua glycolic all over my daughter’s scalp and cover it with plastic wrap. After a few hours, the scale would come out

EL Cerave SA Cream or Dermal Therapy have ceramides and urea, so they are very therapeutic and silky feeling with great absorption. If she's not already using vegetable glycerin mix after shower or bath, definitely use before lotions and creams.

AM Glycerin on wet skin, it’s a hair making miracle. My skin stopped growing and it’s moisturized for 3 days. I have tried everything in my life.

LS For the face creams and wash I love - Mederma AG (formerly Aqua Glycolic) and Dorothy’s Skin Oil (it absorbs well). If she’s into makeup the IT cosmetics CC line is moisturizing but not too heavy. I have tons of fine hair and I like the L’Oreal EverPure line for daily and Neutrogena T-sal when needed. Dry shampoo can help as well. I have IV some might work differently on her. It is a great cc cream. It’s what I’ve used for years

DD yes same for me. I put the Dorthy’s Skin Oil under it and that makes it even better. I use the Mederma AG daily on my face and that keeps the dryness under control.

LS  my legs and feet are the worst. Always have been. During the summer when I can swim more and get some sun they are better. Winter is 🤢

DD yes same. Do you have a MicrodermaMitt? That’s great for legs and feet. Also if you can get Salex RX which is a 6% salicylic acid cream that helps too.

ZW I have lamellar icthyosis and since I was a baby my family was introduced to vegetable glycerin. We have always added it about 50/50 to a body lotion. Now as an adult and depending how weather is or how dry i feel I adjust my glycerin. I mix it with Vaseline Intensive Care cream for extreme dry skin. I also use MONAT 2 in 1 shampoo/conditioner or the intensive repair shampoo and conditioner (please read negative reviews online). It has done wonders for my skin and scalp, no itching and less flaking, plus I have had hair growth and thicker hair for over four years now. I also use Replenish masque and Rejuveniqe Oil for on my scalp after shower and bath and leave on until the next shower or bath and I haven't looked back or used any other hair products since.

LS se Norwex cloths and they are good. Just started. I rotate creams.

DD have those too. For me I like the Microdermamitt better for a good scrub.

LS I saw a review of IT CC Cream and she compared it to Maybelline Dream Urban Cover. Less expensive for a teen to try. I actually like it, I was doubtful of Maybelline brand but they've come a long way.

JKP I have used Ponds Face Cream for years and it works great for me.

LK  Coconut oil helps

JB mine is fine too. Dove stay in conditioner works for me. I have EH.

CB I have lamellar so I don't know if these suggestions will work for you. But I've found that Tree To Tub Soapberry for hair is gentle to my scalp and hair. Also, Earth’s Cure products are great. I like three products-- the mineral cleanser, the nano-peptide moisturizer (day), and the retinol cream (night). They come for a combo price and last a long time. As to things specific for ichthyosis I use Neostrata Resurface and a compounded prescription cream called acetylcysteine/urea versacream 10/5%. I use the NeoStrata cream as a scalp treatment

AG I have started using two new products that are great. Head and Shoulders Supreme Nourish and Smooth shampoo and Kristen Ess Daily Scalp Mask. Both available at Target

RS Affected adult here, symptoms similar to palmoplantar EI. I transitioned away from the goopier stuff as a teenager, too (for lots of reasons). I generally am trying to let my affected kids chart out their own path on skin care, and their own preferences. There is a balance and great deal of personal preference on this stuff. As an adult, there are times when I've taken 3 showers in one day, most-notably when I had public appearances in the evening

Scale removal can help with discomfort (and dryness) on the scalp. I occasionally use T-Sal, and that does really dry things out. Don't use it every day. When I wash my hair multiple times during the day, I find that my biggest problem is with the texture and body of my hair (and not my scalp), but my degree of scale may be different. I've found that a good conditioner and then rubbing argan oil into my hair, after I get out of the shower.

EL Get recommendations for derm dealing with ichthyosis. Maybe a trial with one of the immunotherapy drugs would be helpful. Get a better quality of life.

AL Try adding oils to the scalp like almond or olive oil, then she can wash it in the morning as usual.

DG I have "mild" CIE as well. Wow! Washing hair more than once a day is a lot! Scalp is just skin, so for me, when it was in finally in balance, it made all the difference. Some products are thick and cause build up. Some are harsh and strip everything. So when I began exfoliating regularly, and getting the scale down to normal maintenance, it really helped (I broke the cycle of heaping thick oily or silicone based "moisturizers" on that seem to glue the scales together. I stopped using the super harsh stuff). I use Eufora products and they are really effective but aloe-based--so really gentle and don't cause build up. They have a scalp spray that I use daily (when I remember) and then their thickening shampoo and conditioner are wonderful. Their hydrating line is also great. Clear the follicle of scale and you may regrow hair. I buy everything on Amazon

For face - same. Keep things in check. Regular exfoliation means less build up---the moisturizers you use can actually penetrate. When you have a ton of scale, putting anything on top will stay on top. I like Mircodermamitt to manually scrub my face with water, or just water, and then apply a saliclyic acid or other Alpha hydroxy (I like Paula's Choice 2% BHA (liquid) and Neostrata Bionic Face Cream (thick and feels almost like Vaseline) I do one of those three things probably five times a week. I use a homemade face oil blend at least once a day. It absorbs quickly enough that I could put make up or sunscreen on over it. 


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