Monday, November 30, 2015

Two Months TSW

Since my last TSW update, my son's symptoms peaked and then have shown improvement! 

Week 5 TSW...
Sunday was pretty rough... His face and neck were visibly broken out with red splotches and he was super itchy. It was a struggle to make it through worship services and we decided he had reached the point of needing to stay home in the future. Monday night he had a terrible time sleeping and was thrashing all over the place, flailing about and whimpering. He was absolutely miserable and incredibly itchy. It was a long, rough night. 

By Tuesday, HIS FACE AND NECK LOOKED NORMAL! His torso was showing improvement. His legs were consistently staying 99% dry instead of oozy. 

On Wednesday his continued to show improvement in appearance with less redness and LESS ITCHINESS! He stopped taking Benadryl!! 

Unfortunately we already had scheduled an appointment with a dermatologist. Before booking the appointment we were very positively assured that this doctor had treated TSW before and knew all about it. I was VERY CLEAR that I'd only come if he offers non-steroidal treatment. Well... he sent us home with a prescription for none other than hydrocortisone ointment! Can you believe it?  What a waste of my day, two hours drive time, and $170. 

The dermatologist was also very positive that our entire experience up till now was caused by a raging eczema infection (not TSW) that needed treated with a double to triple long round of antiobiotics (14-21 days!!!). He completely disregarded that the skin and itch had seemed to take a turn for the better, and guaranteed me that our son would land in the hospital within two weeks without the long dose of antibiotics. 

We really questioned the infection diagnosis and wanted a second opinion, so I booked an appointment with his allergist for Friday. In the mean time his skin continued to improve. (Hallelujah!) 

The allergist told us that he definitely did NOT have an infection, and did NOT need antibiotics!! She was absolutely sure of this (just as the dermatologist was absolutely sure of the opposite). She did send us home with a long medication list which included a stronger prescription dose of topical steroid. At this point I was just so glad he didn't have an infection that I didn't take offense to the topical steroid prescription. (She knows that we don't want to use topical steroids anymore but told me it would still be written in her recommendations.)

I have to crack up at Briana's video about "the doctor visit..."

Considering his recent turn for the better, the confirmation that he did not have an infection, and the lack of consensus between these two specialists, we decided to give our current regimen a little more time to see if his body would continue healing itself. From the allergist's recommendations we also began using Ranitidine (a stomach medicine with antihistamine effects), bleach baths (to prevent infection), and eczema gloves (a major upgrade from wearing socks on his hands). 

Weeks 6-7 TSW...

Remember how the dermatologist absolutely ASSURED me that our son had a raging infection requiring up to 21 days of antibiotics? Since he said "I'd hate to see what he looks like two weeks from now without these antibiotics," I'd like to let you take a look for yourself. These pictures were taken exactly two weeks after that appointment (with NO antibiotics, since our allergist confirmed he didn't need them)... 

This is the best he's looked since going off topical steroids, and it's a beautiful sight to me! He just needed more time. His legs still had a ways to go, but were considerably improved. 

The improvement between last month and this month is a night and day difference. During weeks 6-7, he seemed to arrive at a plateau. He maintained his mostly-healed state, with his upper body looking great and legs looking OK, but he was still somewhat itchy. At some point during these weeks we stopped needing to wrap him in tubifast bandages! Our life began to somewhat resemble almost normal again. We finally had hope for the first time that the worst may be behind us. 

Weeks 8-9

He's held steady for several weeks now. His upper body has remained in a mostly clear state, with just a couple subtle rashes coming and going in his elbows. 

The fronts of his legs are nearly normal again...

and the backs of his legs are holding their improved state, though it's not entirely clear yet. They vary from day to day but seem to be back to a more normal, manageable eczema state rather than the extreme redness, rawness, skin weakness & oozing he experienced during TSW. (He hasn't had those symptoms since week 5!!)  

It would seem that his cycling is following the pattern I read about in Dr. Rapaport's findings... the flares reached their "peak in severity" and have now begun "to lessen in severity and duration. The 'good times' (interflare phases) become longer... The distant areas do not manifest rash anymore, only the original long-term steroid-treated sites recur but with milder eruptions." 

At the recommendation of a naturopathic doctor we visited in week 4, we've been on a whole-food, anti-inflammatory diet. We've done no sugar, no food dye, no grains, and no processed food. I'm not sure how much diet comes in to play for him but as long as he was improving we didn't want to dramatically change anything. We're just now starting to re-introduce  non-gluten grains in small portions, and keeping up lots of fruits, veggies and lean meats. 

Our allergist recommended trying an elimination diet for tree nuts, peanuts, eggs, milk, and wheat. We've done the wheat, we just need to monitor his reaction when reintroducing it. Afterwards we can try the others, in case any of them trigger his remaining eczema. However I think it's safe to say at this point that eliminating the topical steroids was a MAJOR step in the right direction for him. Instead of continuing to require more and more steroids, his body is regaining its ability to heal naturally. Even though the withdrawal was AWFUL, the results are worth it! 

Only time will tell what the future holds, but at least now it's looking brighter. :) 


  1. This is such a huge relief... an answer to many prayers for him... and after being with him this past weekend, we (his grandparents) noticed him being so much more comfortable overall. He wasn't scratching or itching or wiggling out of his skin. Instead he was calmer and able to articulate himself in teaching me new games we played together and sat calmly. It made my heart so happy :):)

  2. Can you please post an upadate, my son is going through the same...

  3. Thank you Tracy; I just started my own TSW path. Your recipes for butter are just the kind of thing I need, and your detailed description of your son's recovery give me great hope. I only used topical hydrocortisone for a total of three weeks, prescribed for a red pepper/mango skin rash on my face, and got a lovely case of RSS from it. No more steroids.