Infant Ichthyosis Care Routine Video ~ 5 months old

In the video, I suggest having aquaphor compounded with hydrocortisone.  We do not use this all over anymore because I'm not comfortable with using steroid creams any more than necessary.  Medicaid will cover medically necessary lotions.  Our private insurance will only cover certain Rx lotions. 

Routine   

    Don't be afraid to experiment: We started out doing puralube/lotions at every diaper change (every two hours).  We only bathed about once a week.  At around 7 months old, we began using mimyx & that allowed us to space out lotioning a bit & then we increased bathing which also helped the condition of Ethan's skin.  There are many people who report that infrequent bathing works best for them & we know someone who stays in the bath for 6 or more hours a day (we don't have time to stay in the tub that long;))  You'll need to find out what works for your child & what works with your lifestyle.   

    Keep a "routine sheet": This is important especially if you and/or your significant other are the main caretakers.  If there were an emergency, someone else needs to know how to care for your child's skin.  I try to update our sheets with any major change.  I keep it on the computer, so it is easy to edit.

    Our current routine:

                    A Sample Day:  we do have to vary our times based on what therapy/appointments we have on a given day, but we use the same time intervals between lotions/bathing.  Lotions do very little without a bath first.  Ethan's is at its tightest first thing in the morning & in the late afternoon (both times are the longest without a bath, but we are doing as much as we feasibly can even though he sometimes requests and extra bath when he is getting tight).  Our schedule looks overwhelming, but it is such a part of our daily routine now that it is just incorporated in our lives without much thought.

                    7AM wake up, use bathroom, eat breakfast, allegra, multivitamin, dha supplement, set out lotions & clothing

                    8AM 45 min- 1 hr bath- lukewarm, soak (plays, eats a snack, mouth stretching & exercises using nuk brush per OT/ST), use hands/washcloth to remove loose skin/scales (I use about the same gentle pressure I would on my own skin, but this removes a great deal of fine scales) use hylira in hair

                    9AM-9:30 puralube in eyes, mimyx all over except under chin & around genitals/inner thighs, sween 24 all over except under chin & around genitals (apply lotion using myofacial release massage to reduce tightness per OT) aquaphor healing on feet

                    11AM puralube in eyes, sween 24 on hands/face & itchy locations & then eat lunch

                    12 PM 30 min bath, puralube, sween 24

                    1PM nap, if we are lucky;)

                    2PM puralube, sween 24 on hands/face & itchy locations & eat snack, allegra if needed

                    4PM puralube, sween 24 on hands/face & itchy locations

                    5:30PM dinner

                    6:30-7:30PM bath, same regimen as the AM bath

                    7:30-8 PM puralube, mimyx all over except under chin & around genitals/inner thighs, eucerin ointment & aquaphor healing all over except under chin & around genitals (apply lotion using myofacial release massage to reduce tightness)

                    8PM stories/atarax/ear drops MWF & bed (strongly suggest kumfy cotton sleepers to reduce scratching 'til bloody)

 Lotions/Ointments

        Scalp:  Now that Ethan is older & has more hair, we comb his hair with a flea comb to help the scales that are floating in his hair come out if he isn't resistant to it (if it hurts, we don't).  We also like to use Hylira (Rx).  It doesn't make Ethan's hair greasy, but seems to moisturize better than most lotions we've tried on the scalp (it's also helped moisturize his hair & keep breakage down).  It seems like the scales prevent lotion from being absorbed very well.  I'm personally not comfortable with forcible removal of scalp scale, as it causes a good deal of discomfort and leaves broken skin in our experience. 

        Face/Body:  First layer= mimyx (Rx)  Second layer=eucerin (otc)  third layer=aquaphor healing or sween 24 (both otc)  You may have to special order the sween 24, but it is worth it!  It is not greasy like most lotions.

        Diaper Area: Currently: Diaper area is left alone.  If extremely irritated, we use TMC.  Previously:Acid Mantle (otc) usually.  Sometimes nystatin or other antifungal.

    Bathing

        We currently bathe at least three times a day (for an hour at a time @ 95-98 degrees F) & use Aquaphor Baby Wash (otc) on an as needed basis.  For washing his hair, we use Vanicream's Free & Clear line.  It doesn't seem to irritate his scalp or make it any drier as long as we only use it every once in a while.