Written Wednesday, June 18, 2014
One year, two days ago, I applied L’s final application of topical steroids. For the next day, we visited Dr. Rapaport and received confirmation of my internet diagnosis of L’s now steroid induced eczema. Although this wasn’t great news, it was better news than the allergist’s persisting diagnosis of worsening eczema and allergies with increasingly stronger doses of steroids that weren’t working. A steroid induced eczema diagnosis was better because it meant HOPE for healing, rather than the worsening symptoms we’d experienced over the previous year.
The past year hasn’t been easy. The past month and a half has been the hardest yet. Not for L – for me, his mom. You see, when you start on this journey, you see the best case scenarios and you hope that will be the road for your child. Because it’s pretty terrifying to take the leap of faith that this is the correct diagnosis since most of the dermatology and allergy world refuses to believe in OR ACKNOWLEDGE steroid induced eczema. So you look at the best case scenarios and you envision your child being one of them. Because that’s what you have to do to start the journey. Then you get to 11 months, 11.5 months, 11 months, 3 weeks, and 5 days… and you realize your child is not yet healed. And you get overwhelmed. Overwhelmed with the sadness, grief, fear, and anger that this journey isn’t over yet.
Don’t get me wrong – I can see L is close. I consider him to be 85% healed. Everywhere is GREAT except the following areas. 1. It really is an inconveniently itchy neck sometimes that is hardly worth mentioning except I see this skin continue to cycle through red, swelling, itching, flaking, new, repeat cycle. 2. Next best are the hands/wrists that are sometimes healed completely, then swollen, itching, and one infection on the index finger of the left hand that subsided, and is now back, so has me worried. 3. Working our way down, the next place is the itchy groin and red/flaking/irritated butt crack. It has really only cleared three times the past year. That’s just how insiduous this TSW is: we never applied creams to his sensitive areas! But since the skin is one organ, the toxins find the easiest way to exit the body. I am going to change the wipes we use, as I’m concerned they are irritating the area and it will probably have a better chance of healing without whatever chemicals are in the wipes. 4. Next comes the back of knees. Shortly after my first post, the thick scabby areas completely resolved. The redness has remained, but it now cycles with a pink new skin before itching causes it to get irritated again. He gets some scabs and thick swollen buildup, but it subsides and cycles, as the other parts do. 5. The final places are the feet. Top of feet and ankles. They are by far the worst. Even these, though, after having a solid ring of lichnefied (thick) swollen skin around the top of the foot and broken, scabbed skin on the top of the foot and the ankle, are improving. The lichnified skin’s swelling and thickness has decreased considerably and only 25% of the original spot gets scabs any more. The tops of the feet, before covered 100% in scabs or ooze or blood or rawness, are now maybe 50% covered on any given day. And there is now healthy skin where there was none before. The ankles’ thick scabs are replaced with broken cracked skin that binds together in a more normal healing fashion. Other than skin, which I can’t believe I can write 500 words about(!), he was able to enjoy playing WITH the WATER hose for about 4-5 minutes before having to stop because it finally stung. This is a HUGE improvement. Oh, and he’s been taking his clothes off and getting LOTS of sunshine during the days and doing fine with the sun and being outside, even when it’s hot.
So you see… LOTS of progress. So why am I so down and feeling so defeated and questioning whether we’re doing what’s right? I think it’s because the progress is just So. Damn. Slow. and Inconsistent. As I’ve seen over and over again in the forums and my own son, and counseled those coming through behind us, Topical Steroid Withdrawal is not linear progress. It’s not like you a) start feeling a cold come on, b) have it peak in 3-5 days, and c) feel it resolve over the next 3-5 days, d) feel perfectly and function as a normal human until e) you get sick again 1-5 months later. NO, healing TSW is not linear.
After the last post, L continued to get better, through a trip to the East Coast, until we were home for five days – it was a three week healing cycle – and that wasn’t to perfect skin – it was to the best he’s had in years, but not perfect. Then it started to flare, slow but sure, and cycle back down to worse skin again, not as bad as it’s ever been, but bad nonetheless – the thick scabby lichnification came back, the red came back, the flaking came back. The knees which had decreased in size of affected skin grew to cover a larger area again. The itching, while better, isn’t over. L is down to 1-2 itchfests during the day now – another HUGE improvement – and usually only triggered by getting hot. But the nights are still rotten. He can get to sleep *normally*, but once awakened to itch, takes 1-3 hours to get back to sleep (only itching for 10-30 minutes now rather than the HOURS it was while still on steroids and in the 1st 6 months TSW). Then, once he’s asleep, he’s more itchy until about 5 or 6 am when the cortisol levels start to naturally rise again. So L and I are on this super funky sleep schedule of 9-11 or 12 PM, awake to itch till 2AM, then sleep fitfully till 5 or 6AM, and sleep deeply finally until 10-11AM. We’re getting the correct number of hours of sleep, but the quality is rotten. And sleep will cycle with the flares, gradually improving and then gradually worsening. Even with the improvement, our sleep is NEVER what one would consider normal sleep. I’ll take newborn sleep patterns/deprivation over this sleep pattern/deprivation ANY day of the week.
So TSW is a roller coaster. I get that. But I want to get off. I want my son to get off. I want both of us to have this beautiful, blissful, exuberant just getting off the greatest ride ever high. But it feels more like we’re going to do this slow burnout to where we won’t ever really know when the last great climb was. And that’s just obnoxious.
Some wise people have helped me to remember how far we’ve come. His grandparents, our friends, and L himself. Today he wanted to show the babysitter the new skin almost immediately when she came in. He gets very excited when he can get his socks off because it means there is more healed skin underneath, and he got a twofer today – both socks off at the same time! When I told my parents of our year anniversary, my dad expressed surprise and excitement that a) we made it this far and b) L’s improvement, as they were here to help between weeks 4-6 and months 4 and 5, and saw us at 6 and 8, and have vivid memories of the 4-6 week and 4 and 5 month skin and itching. A dear friend who is like family to us wrote to me, “You are doing an awesome job that is so hard!!!!!!!!!!!!! When you have won, you will wonder how you did it, and you did it because giving up was not an option. But take time to do something fun and celebrate small victories and know that you are doing the right thing.” Perspective is what all these people (and others) gave me. We’ve come a long way, baby (now 4yo boy!) L!
So, in honor of a one year anniversary, we got L his favorite dessert – gluten, dairy, soy, NUT, egg free “Cinnapie” – cinnamon and icing covered pizza crust – de-lish – and lit a candle for him to blow out. We are going to purchase one of the outdoor firepits for the backyard to extend our days – as long as we’re not sleeping, we might as well enjoy the wonderful summer evenings and stars and roast marshmallows all summer long. And yes, I did indulge in a glass of champagne. Because we have to celebrate the little steps that are really quite large on a journey as long as this. Happy and healthy healing to our fellow TSW Warriors out there.