Hi everyone,

My son Myles has what the doctors think is Lamellar.Myles was born with a Collodion membrane on covering his skin.
He is 3 months today.

What my husband and I would like to know how often you all cream your babies? and how often do you give them a bath?
Myles scalp is still peeling and he still has two little original Collodion skin patched above his eyes, did anyone else experience this?

Your response is greatly appreciated.
Thanks
Tara, Rene and Myles

HI MY NAME IS KRISTINA MY SON JEFFREY HAD ICH BUT THEY THOUGHT IT WAS X-LINKED KIND. HE ACULLY PASSED AWAY 7 MOS AGO HE WAS 10 WAS BUT IT WAS NOTHING TO DO WITH THE SKIN DISORDER IT WAS SIDS BUT WE USED TO BATH TWICE A DAY A LIL ONE IN THE MOURNING AND LOTION AFTER AND IN BETWEEN WITH AQUAPHOR BUT THERE ARE MANY OTHER THING THAT OTHERS ON HERE USE AND KNOW MUCH MORE THAN ME. THIS SITE IS WONDERFUL WELL I HOPE EVERYTHING GOES GOOD
KRISTINA

Tara,
When our daughter (who has ARCI, which used to be called LI/CIE and now are kind of lumped together) was little, I put Aquaphor on her twice a day and Cetaphil lotion every time I changed her diaper. That was overkill, but her skin was so dry I thought that was what she needed! Now that she is 2, I Aquaphor her twice a day, give her a bath at night, and put Cetaphil on her once mid-morning and once after nap in the afternoon.

When Cade was a baby we used only Aquaphor and did it multiple times a day (originally the NICU told us every three hours which was insane. The derm agreed that every three hours was really much too often and said 2-3 times a day would be good.) Aquaphor alone didn't cut it for us. We changed his routine and by the time Leah was born we had a pretty good handle on things. When Leah was a newborn we lotioned her in the morning with Curel Ultra Healing, once more in the afternoon, and covered her with Aquaphor at night...along with spot lotions during the day primarily on her face. Now that even more time has passed we have an even better routine which is Curel Ultra Healing in the morning topped with Cetaphil Cream, spot lotions during the day...primarily their faces, and Curel Ultra Healing at night topped with Aquaphor. This works well for us. Cade and Leah get a bath a couple of times a week. For us, too many baths really dries out their skin.
Lisa

Hi Tara,
My mom went through a lot of trial and error products trying to see what worked best for my lamellar ich. as a baby and as a young child. Though I like what I use I'm still waiting for the better products to come along that help my skin even more. For me the more I bathe the better I feel so I bathe once a day and lotion a few times a day. Bathing in oatmeal bath or salt baths are good. But, you really need to use much more than what is usually recommended to get some results. Bath oils can be helpful too. Immediately out of the bath use your favorite creams and gently comb out any dry scalp pieces you can without getting carried away and leaving his head in pain which is easy to do because you just want to get rid of all of it. Most of us with ich have figured out that getting rid of all the scalp flakes is somewhat impossible and really leaves you in pain, sometimes a lot of pain. I use over the counter products that I favor a lot like Olay wash with shea butter and St. Ives Mineral Therapy (19 oz bottle) mixed with glycerin (about 6 or more ounces-and the glycerin is sooo crucial to my skin). But, I have heard a few mothers say Curel Ultra Healing or Cetaphil Cream is good on their children and it may work great for Myles. Also using a water bottle with your favorite water and oil mixture; first you shake the bottle to mix the oil in the water and then you spray his skin and gently pat dry with a towel and immediately apply moisturizers. This can help the skin soak up the lotions and reap the benefits kind of like coming out of a fresh shower. Where you live can make a huge difference too. Good luck and best wishes to you, Rene, and Myles. God bless!

Karen (wva)

Hi Tara,

My name is Teri and my son, Wyatt is 4 months he was born on June 22, and it sounds like we are in the same boat. Does it seem like the older he gets the worse hes scaling? If I hear anything new I let you know.

Teri