The quest for true healing begins...

Hi, my name is Tricia and I am mom to three children, one of whom is Katie.

Around mid-May 2014, I happened upon a support group for topical steroid addiction (TSA) and topical steroid withdrawal (TSW) on Facebook.  From there, I found a link to ITSAN.org which stands for International Topical Steroid Awareness Network, which is a nonprofit group whose "mission is to support individuals during Topical Steroid Addiction and Withdrawal (Red Skin Syndrome), fostering physician and patient education for prevention and treatment and raising awareness."

Here is my first post that I made to this support group, which gives some background information on Katie's history and what she has been going through lately.

My daughter is 12 years old and has suffered from eczema since she was a toddler.  It started out as two quarter-sized spots on the insides of her elbows and has gradually gotten a little worse each year.  But this year has been the worst year ever by far.  She has been on and off topical steroids (TS) since she was a toddler, although the last few years, she has been especially uncooperative with letting us apply anything to her skin (even any kind of moisturizer).  She is by far my most challenging child temperamentally, although reading all of the posts on a support page has really helped me understand her feelings a great deal more.  

This year she has been having weekly coal tar and light (UVB I think) treatments at the dermatologist's office for two or three months, but we stopped a couple of weeks ago because they were very expensive, even after insurance, and we didn't see any noticeable difference.  She has been on oral prednisone a time or two, but it only helps for a little while and it eventually comes back even worse, it seems.  She has had it all over her entire body, with the sole (no pun intended) exception of the bottom of her feet.  

She has had allergy testing this year, and the week off all antihistamines was miserable for her.  We never even knew before this year that she also suffered from my nasal allergies.  We bought some antihistamine on the way home and she had noticeable improvement within 30 minutes.  She currently takes Atarax (hydroxyzine) 50 mg twice a day and Zyrtec 10 mg (generic cetirizine) twice a day, as instructed by the allergy doctor.

I have family members in the medical profession, and at least one of them is very concerned that my daughter will have scarring and permanent disfigurement due to this year's eczema being so bad.  She really thinks we need to consider some form of oral or injectable immunosuppressants.  Even though I am a pharmacist, I tend to be a bit more natural-minded, and I am very concerned about the side effects of such treatments to my daughter.

Also, her scalp has been very very flaky & itchy and we have never had any problems with it before this year.  Even her eyebrows are noticeably thinner this year due to all the scratching.  Her hair used to be so straight & smooth & this year it is extremely frizzy due to the constant scratching & picking at her scalp.  We asked the dermatologist for something for her scalp that wouldn't burn and he prescribed betamethasone lotion, of which I think the second ingredient is some form of alcohol & it stung her even when applied to a non-affected area of her skin!  If you have scalp issues, what do you use to treat them?  What do you use to wash your face, body & hair?

What do you do to help teach your child to stop picking at scabby areas, which is only making them worse?  And what do you use to moisturize that doesn't burn or sting and isn't terribly greasy or sticky?  We usually use Aquaphor (when I can get her to let me apply anything) because it is one of the few she has tried that doesn't sting.  She doesn't especially like it because it is greasy and makes her feel sticky.  It's also really hard to wash off my hands afterward.  She also is okay (sometimes) with Cerave, but I prefer to try things that are more natural and with fewer chemical ingredients.  Last night we tried coconut oil for the first time and she really seemed to like it.  She said it smelled good and seemed to absorb quickly (so the greasiness went away faster).  It didn't sting and wasn't sticky.  I liked that it was much easier to wash off my hands. 

That was the end of my first post.  I have watched both the videos on itsan.org (which I highly recommend you watch if you want to be educated when it comes to encouraging Katie throughout this battle).  I have read many blogs & posts from others who have been through this and come through with great looking skin at the end, although the struggle was long & difficult.  Katie is aware that this won't be easy, but she is also informed & really wants to take this path toward healing & healthy skin.  I love her and want to do what I can to support & encourage her in any way I can, even if that means getting up in the night with her multiple times (just what I need to remind me of why I really didn't want or need to have another baby at my age, LOL!)

She or I will be posting pictures and stories along the way for anyone who wishes to follow us on her journey.  We truly believe there is a light at the end of this tunnel and it will all be worth it in the end.  If you pray, continued prayers are much coveted & appreciated.

Here are a few pictures we took on May 13, 2014.  These were taken after about a week off of topical steroids.  Unfortunately, the typical path of TSW is that it will get worse before it gets better, and the road to recovery is long, although we are praying for quick healing with minimal pain & suffering.

And here is a link to a whole gallery of before & after pictures of others who have traveled this narrow & difficult path.

http://www.itsan.org/Gallery.php

If you are following us, I recommend buckling your seatbelt & holding tight as it is bound to be a bumpy ride (although we pray it is as smooth as possible, of course)!

I should also add that not everyone who uses topical steroids necessarily ends up with TSW, but you never can tell if you are one who will be affected in this way, and there are so many people out there who wish they had never begun using them, ourselves included.