Skin Tips

(Originally posted on May 5th 2013- IAM: Ichthyosis Mommy Tips)

Although I say "skin tips" this section is more of what I do for skin care. All of these "tips" are what works for us which may not be the case for everyone. This page is written in my opinion. 

Be sure to CHECK WITH YOUR DOCTOR before trying something new or something you are unsure of!

-Baking Soda in the bath
     We have always used baking soda in the tub water. Our dermatologist told us that the higher the PH of the water the better it is for your skin. He related it to sea water as many of his patients have told him that their skin feels so much better after being at the beach. Typical tap water is around a PH of 5 and sea water is around a PH of 8. We use 1 tablespoon per gallon of water and I notice a big difference in Evan's skin when we do not use it (dries out/is flakier much faster). Baking soda is also know to help with desquamation, the aiding of shedding skin.

     Ok, I know this is a no brainer but I have found Aquaphor to be the best emollient for Evan. I know different products work differently for everyone but it seems to last the longest. Lotions are not effective for Evan's skin so we literally need "straight up" petroleum. But Aquaphor has more than just petroleum to moisten the skin. Regular vaseline will work but it does not seem to last as long and find myself reapplying often. Also, we receive a free case of Aquaphor 4 times a year which covers almost half of what he needs right now. When Evan is older he will be able to decide what works best for him and what product feels best on his skin. I look forward to the future when Evan can incorporate some natural products to his regimen if possible. As much as Aqauphor is literally saving Evan's life I can't help but wonder how the use and exposure to the toxins of petroleum will affect him over time.

We apply Aquaphor immediately following his bath from head to toe. Anywhere there is skin, there is Aquaphor. We reapply head to toe, 5-6 times per day or as needed. 

     This is something that everyone with Ichthyosis has to do. But what works for us, which may not for all, is the use of "cheap washcloths" (18 pack- Walmart $4) for exfoliation. We have tried many different exfoliating products (gloves, pumice stones, loof etc) but they all seem too sharp for Evan's skin. High quality wash clothes are too soft and do not work well for us. Skin to skin rubbing is also a gentle way to exfoliate especially when scrubbing with washcloths becomes intolerable.

     This is something that is absolutely NOT advised by our doctor. But it is something that we can't help and does help exfoliate Evan's skin. After coming to know Evan's skin better than the back of my hand, I know what I can or cannot pick. One of Evan's biggest problems is that his skin is growing so fast his body can't keep up with the shedding process. So anything I can help remove, that is not going to hurt him, will only help him. My husband is much more brave and does push the boundaries sometimes. But if we don't keep up with scale removal it will only get thicker and thicker and thicker...

-Bleach bath

      We give Evan a bath with a splash of bleach in it, at least once a week or after really messy diapers! Since Evan's skin lack the proteins need to fight off infection we need to "sanitize" his skin to be sure harmful bacteria is killed and washed away. Since Evan is prone to infection being clean is very important. We use about 1 teaspoon per 3 gallons of water. BUT BE SURE TO GET THE EXACT MEASUREMENT FROM YOUR DOCTOR.

-Hibiclens (antimicrobial soap)
     This is a must in our home and I'm sure in many homes. I only use this soap when I see something sucpicous on Evan's skin where a possible infection might be brewing. I will also use this soap on a fissured area or a cut to make sure harmful bacteria is killed and washed away. I try not to over use it as I want it to be most beneficial when appropriate.

-Cut hair short
     I know this is tough for girls but for Evan it is the easiest way to get the scales off of his head. Even though he does not have much hair at all, we shave what he does have so we don't pull on his hair as we try to remove scales.

-Avoid retinoids
     I know this is very hard to do especially with very scaly forms of Ichthyosis. Since I have been very fortunate to stay home with Evan, I have been able to do some intense skin care. I am the type of person that likes to avoid harmful prescriptions that have very harmful side effects. Luckily, Evan did not take oral retinoids at birth (when many HI babies do) because it make him very sick. We have Tazorac, a topical retinoid, which we rarely use. We try very hard with A LOT of 'elbow grease' to remove scales so perscriptions do not need to be used. But I am very glad they are available for when we might need them. I know it is very helpful for some but Evan will have to make that decision on his own when he is old enough.

     I still do not have a good grasp on this "tip" but usually, I will apply lots of Aquaphor to the area Evan is scratching. Any time he is caught doing this I immediately stop him but also check for a hair or fuzz which is usually the culprit 50% of the time.

-Cool down options
    This is something I still don't have a strong grasp on but I try to work it out.
    -Spray bottles are a necessity in the summer. I do not go anywhere without it.
    -Wet socks and a wet hat seem to help keep the body cool especially when outside.
    -Wet washcloths work well and help cool down.
    -I will freeze wet washcloths and let Ev play with it when he gets hot.
    -Old (clean) frozen teething rings to play with or rest on his body when in the car seat or stroller.
    -Ice packs are helpful in the car seat (covered in a blanket). Ev always heats up on a normal day by sitting in his seat so keeping his back cool is helpful.
    -Portable/handheld soft blade fans are great since they are not harmful when touched and can be held by young children without the worry of getting a cut. 
    -Baby pools or baby water tables are great cool down activities.
    -Cooling vests are used for many affected by Ichthyosis and we have yet to purchase one as I was hoping to get a size that would last the longest.
    -Cold Aquaphor- I still need to try this!
    -Obviously air conditioned rooms are a necessity rather than luxury for us in the summer.

***It is most important to avoid the summer heat between the hours of 10 am- 4 pm. Stay out of the sun, make sure you have the proper cool down procedures in place and stay hydrated.***

Ear Care:

***Never put or stick anything into your child's ear without speaking or consulting with and experienced medical professional***


Skin builds up inside of Evan's ear canals and the "nooks and crannies" of his ears just as fast as the skin on his body. I clean out his ears not only make sure he is comfortable but to improve his hearing. He regularly sees an ENT for office cleanings and goes into the OR 1-2 times a year for a deep cleaning of his canals. I DID NOT start cleaning the entrance of his canals until after I consulted with his ENT.

Other tips:

-Keep an "emergency" kit in your car
     You never know when you might get a flat tire, get into a fender bender or forget the diaper bag. Always make sure your phone is charged up and keep a small container of necessities in the car if the need arises. Items I include are : a few diapers, tube of Aquaphor, baby wipes, bacitracin, mini first-aid kit,  unopened bottle of water, snack, a change of clothes, small blanket, hat, hand sanitizer, clorox to-go wipes (NOT for skin), spray bottle and emergency ice packs. This kit changes with the season and will include a winter blanket, warm packs or a sweater. You don't need to go overboard (though I tend to!) but you can never be too prepared, especially for children like ours.

-Keep some necessitates in your purse
     This is the purpose of a purse right? I always keep a small tube of Aqauphor, hand sanitizer, paci wipes and a snack in my bag. Half of this list would be in my purse anyways just for me! I usually don't bring the diaper bag into the store if it's a quick trip but may end up needing something while we shop.

-Car starter
    Who doesn't want a car starter??? I do not have one but would absolutely love one! Not to use it as a luxury item but as a lifesaver. One of the most frightening tasks is being out in the summer heat. I do my best to avoid the "hottest hours" but sometimes it is inevitable. And even on a cool summer morning the car still heats up quick. Ideally, if I had a starter, I can start the car form the store's window and have it cool down before we head out into the heat. As overheating is one of Evan's most dangerous risks, a car starter can be very beneficial especially in the summer.

-Car seat cover
     Aquaphor gets everywhere. And one of the hardest things to clean is the car seat. Though most car seats upholstery can be taken off and washed, it is a hassle and has to be planned out perfectly. Some car seats are "spot clean only" which is a nightmare when dealing with Aqauphor stains. Lucky most baby product companies have created covers which can easily be wiped down. In the winter, cleaning Aquapor is not as much of a concern as Evan is bundled up. But in the summer, in short sleeves and shorts, those legs and arms smearing Aquaphor everywhere creating breeding grounds for bacteria, Yuck!

- Lots of clean stuffed animals
     Stuffed animals are breeding grounds for bacteria. After one swipe of an Aquaphored face or hand leaves a reservoir of germs to cling to. Having an abundance of clean bears, dogs and bunnies to cuddle is a necessity for us. Luckily, Evan is not attached to one specific animal which makes it easier. If that is the case with your child, stock up on that special stuffed animal to have clean ones on hand!

-Baby wipes
     I use the all natural wipes as anything with alcohol can be drying or painful to Evan. The natural wipes are great because not only do I use it when changing him but they can be used to wipes his hands and face after a snack or meal. I keep a package in my car, obviously the diaper bag, and at my fingertips at home.

     These are perfect for those public outings when you need a quick sanitizing. When I travel with Evan I used these on the plane to wipe down the arm rests, windows and tray as I knew he would be touching it (and I can't imagine the amount of bacteria that can collect up on these surfaces). I try to avoid changing Evan in public but when I have no choice I use lots of wipes to clean the baby station and anything he may possibly touch (then put down the diaper pad and blanket). The Clorox-to-go packs are convenient and small enough to fit in your purse.


Our MicroSilk Tub

I find it ironic that over 3 years I will still put Evan in his blue baby tub, especially since we have an amazing, "skin healing" tub in our bathroom. I think that I have been set in my ways & routines but since Evan wasn't able to sit up independently until recently, the baby tub has been "easy". I would much prefer Evan to have a bath in our MicroSilk tub. I have to say that it is more work to clean out and prepare since it is a full size tub rather than a 3 gallon infant tub but the benefits from it are undeniable.

A MicroSilk tub is similar to a jet tub but does not force strong air through the jets. The special design emits millions and millions of oxygen rich bubbles which are so tiny they can get into your pores for deep cleaning. For Evan, these little bubbles get underneath his scales and gently exfoliate without the harsh rubbing. We still put in some effort to exfoliate, usually with our hands rather than a wash cloth. We do not nearly put in the effort we would with a traditional bath. Not only does this type of tub help with exfoliation, we have not felt the need to use baking soda in these baths. We will usually put in a splash of bleach for a piece of mind. Even though something looks clean and I just cleaned it doesnt mean it is clean. You can never be too safe with cleanliness and HI.

I can only wonder if these little bubbles are able to make it into his tight pores and give his skin oxygen.  We notice after a MicroSilk, prior to an immediate Aquaphor application, that his skin is very soft. With Ichthyosis his pores are extremely tight, preventing sweat from even breaking through. Removing the scales and allowing oxygen to aid his skin could only be a benefit. You can tell when Evan has had a MicroSilk bath because his skin looks fantastic, not scaly for the majority of the day (again with continuous Aquaphor applications). And at night it is honestly hard to give him a "good" 2nd bath since the morning MicroSilk had such amazing results. Though no matter what, with Ichthyosis, It NEVER hurts to soak!

The water of every bath Evan takes looks as if you shook a snow globe. But the amount of skin left over in the MircoSilk tub is almost unbelievable. It is obvious this type of tub is beneficial for scale removal. We have to use a (clean) fish net to scoop out the skin.  I'm honestly worried about what skin and Aquaphor residue are doing to our plumbing.

I hope you are not eating! And this is a 5"x 3" fish net. 

I'd say the size, width, depth, weight comparison would be a candy bar.. Baby Ruth!

The craziest part is that this is not nearly all of the skin in the tub. And it's not the most I have ever scooped out either. Keep in mind that Evan is only 21 pounds & the size/length of an 18 month old. I can't imagine how much more skin will be left over when he's 10!

I just wish someone with Ichthyosis who is older (or can at least talk) would take a couple long MicroSilks and give me their input! Any takers??

1 comment:

  1. Wonderful, Wonderful, Wonderful! I am in love with your family, and Evan is just precious! Thank God for modern inventions that help special needs people......your info about the tub was fascinating. I also appreciate the dedication you and your family have to making Evan's life as comfortable, enriching and blessed as possible. God bless you all! My favorite pic is of Evan and the dog in their capes! Hilarious! The reading in the tub pic while puppy stands watch is adorable, too!