Some info about topical steroid withdrawal

this video shows what Chase and Chance went through:

https://www.youtube.com/watch?v=ifKoHdIt22Y

Other blogs like mine:

http://warriorgirlbeatstopicalsteroid.blogspot.com/2014/05/warrior-girl-having-fun-in-sun.html

http://misskittydefeatseczema.blogspot.com/

http://klinestopicalsteroidhell.blogspot.com/

http://mylittleredwarrior.wordpress.com/

This is Chase today Sept.12, 2014
I really hope one day he will heal. The nights are still unbearable and the boys still scream if I attempt to put anything on their skin. I know that if they were older, they would be a little more reasonable, but I also know that their skin hurts. The last thing I tried to try to help clean Chase's face was saline solution. He screamed loud enough that I was surprised the neighbors didn't knock on our door. Normally, I just leave him looking this way, with scabs and yellow ooze, because it just comes right back. 
About two weeks ago I tried pure Irish seaweed. Chase didn't think the brownish greenish bathwater would be soothing. He screamed before he even entered the water. I got him in it for about 5 minutes, but I won't be attempting that again for a month if not longer. 

This is how he spends most of his days and nights- playing games on the ipad.

Someone on ITSAN mentioned these Chattanooga ice packs. I looked them up and bought a few on Amazon. One medium sized one fits perfectly on his legs.

He doesn't let us wrap his face often because I usually used to do it  damp in order to loosen up the crusts. This time I just did some dry bandages to dry up the ooze. He did let me clean around his eye area.   

He doesn't look so bad in this pic, because I had slathered Vaniply over his face and it loosened up crusts. I caught him before he started to ooze.

His 5th birthday party early this month.

Chance, my 2 yr old, likes the bandages. I usually put them on after a scratch fest and it calms him.

Chase's feet for the last month- weirdly the toes are unaffected

Chance's feet- his toes are affected

More pics of the kids today

we are trying to truck along and I want to take as many pics as possible because I want to look back someday and see how far we've come...

Chase has crusted ooze and raw cheeks, chin, upper lip and I guess pretty much whole face. I am very nervous putting this out there for all to see. But if it weren't for itsan folks, I wouldn't do it. I've seen others blogs and this is what prompted me to do this. I may not accept comments though, because I don't want to read about what I am not doing right by someone who does not understand exactly what I'm going through.
In these pics, the two yr old has a puffy face. His face is normally more slender and he's got eyelids..not like in these pics. The girl is my only daughter who has perfect skin. Thank God! Really, I feel heart palpitations as I write this. Its hard to look at these pics..even for me and I see him all day.

We were up watching Netflix in the middle of the night because of the scratching. Chance could not stop and was drawing blood. I keep checking his fingernails for fungus. Chase woke up an hour later and so I fell asleep sitting up on couch with the two kids slumped over beside me on the couch. Its almost night again and I hope to sleep a little bit better tonight. We will see.
I'm really beginning to realize that Chase's face skin is super thin. It crusts over...forms thin scabs and then at night he fiercely rubs his face on the sheets and everything comes off and he wakes up to a glossy, ooze covered raw face.
Itsan forums have helped me so much in dealing with this. I felt so alone and guilty for staying home so much. Now I'm trying to deal with things day by day and not try to wait for this to pass too quickly. I want it to, but I have to remember, so I won't get disappointed.

no change yet, but even though they look like this, they still play

They sleep but they scratch while sleeping and the little one breastfeeds still. I know its one of the only things that comforts him when he is crazy itching.
He just turned 2. Chase will turn 5 by the end of this month.
Heres some pics...
All of these taken today July 8, 2014

Im soooo tired and I just want to post these photos to share.
Hi Itsan Family...here is my 4th child. He is 4 1/2 yrs old.

This is Chase when we were using topical steroids, mainly protopic

This is Chase since we stopped steroids and protopic and this is what he looked like every time we would stop a 7 day course of steroids or Protopic

This is him today, and above was last week 5/28/14

This is Chance my 5th child.

He has dry skin all around and he scratches his legs fiercely.

His face is dry but not anywhere near as much as his brother's.

He is almost 2 and he is still breastfed. I don't eat dairy and try to limit wheat.