23 month update… moisturizing the feet experiment

Due to some amazing private messages with some long term mamas dealing with TSW for their kiddos, I worked through some of my and my son’s resistance to bathing/moisturizing.  The PTSD for both of us around bathing/moisturizing due to National Jewish Health is quite significant and going to be difficult to finally overcome.

I decided that something needed to be done for his feet which just continued to struggle. We came up with all sorts of ideas. Bathing never happened, but my son let me put olive oil and melissa oil on his feet consistently. I started April 25. I used zinc once, then stayed with just oil for a week. I only did the left foot the first 10 days. I then added the right when we saw so much progress with the left. I also added zinc/tallow balm from Stephanie’s shop (https://www.etsy.com/shop/TheHomeApothecary?ref=listing-shop-header-item-count)​, on top of the oil mixture in the evening at this point. And added socks during the day for part of the day. We’ve been doing this routine now for three weeks and the results speak for themselves. The bathing hasn’t happened yet, but he was able to get his feet wet in the saltwater briefly twice when in CA last week and have minimal stinging, so we are getting close.

I feel quite confident that this is still TSW (as a visit to Dr. Rapaport affirmed two months ago as well) – see the elephanty quality and the very clear red demarcation around the base of the foot. And, even with the *better* looking skin, he is still quite itchy. He has elephant skin on the front of his knees and the back of his knees look quite similar to his feet.

After discovering that our home uvb unit was 75% less efficient than the hospital unit, (thanks, Dad!), we upped the dose significantly, tripling it over the course of 6 weeks.  We have reached therapeutic dose for his face, and continue to increase it for the rest of his body.

Keep the faith everyone.  And don’t be afraid to try and stick with something on one body part for a period of time before deciding it doesn’t work.  My problem up till now is I’d get overeager and do both at the same time.  Problem is, you can’t tell a flare from a reaction when you do it that way.

23 months, one day today.  We did our first boys/mom vacation without Dad last week, as Dad had a work trip.  So we went to San Diego and enjoyed the BEACH and a few other tourist things – a train ride up the coast to Oceanside, a ferry ride to Coronado Island, the Midway and the Maritime Sailing Museum.  All possible because enough sleeping was happening that I could function even while taking care of L in the middle of the night occasionally.  Itch was relatively minimal.  We are trying to live life even in the midst of this phase of our lives.  What a fun time we had!

IMG_4546

Notice the sand on his feet!

IMG_4708

Short sleeves and shorts!

IMG_4658

In the rain and wind wearing socks in his shoes and jeans/jacket!

IMG_4504

April 25, 2015 – left foot before doing anything new

IMG_4498

April 25, 2015 – left foot before doing anything new

IMG_4520

May 10, 2015 left foot, 15 days of oil intervention

IMG_4528

May 10, 2015 left foot, 15 days of oil intervention

IMG_4749

May 18, 2015 left foot- 23 days oil treatment

IMG_4750

May 18, 2015 left foot- 23 days oil treatment

IMG_4527

May 10, 2015 – right foot before doing anything new (uvb starting work more here already because it was worse than the left foot on 4/25/15)

IMG_4744

May 18, 2015 right foot, notice the elephant skin, but the lack of significant lichnification and huge scars now

Total Steroid Load

Total Steroid Load

What no one ever talks about for children or adults, but seems especially important in my mind for children, with their less developed immune systems and lower body weight, is Total Steroid Load.  This idea was solidified as a real phenomenon and risk when this article was posted in our groups: http://www.msn.com/en-us/news/us/study-indicates-use-of-nasal-steroids-can-stunt-growth-in-children/ar-AA8Ao4Z. As this article explains, Total Steroid Load is the load placed on the body by all of the different steroids which are prescribed to a person for a variety of conditions.  In this case, it is hypothesized and now being researched that Maci increased her risk of steroid side effects by not only using a steroid nasal spray, but also by using inhaled steroids.

If we were just talking topical steroids (used according to the manufacturers’ directions), it may be something that kids’ bodies are able to handle.  But the Total Steroid Load prescribed by doctors for my son starting at about 6 months old till 3years, 3months was:

* a couple doses of oral dexamethasone for croup;

* a shot of some steroid (can’t remember which) for croup;

* steroid inhaler every time he got a respiratory virus first prescribed at 8 months old;

* two doses of iv steroid for dental surgery 8/2011 and 8/2012;

* and also topical steroids started 4/2011, administered for maximum 7 days at a time, then taking a 2-8 week break before using again… until 1/2013;

It was at this point (3/2013) my son showed signs of Topical Steroid Addiction and subsequent Topical Steroid Withdrawal or Red Skin Syndrom.  Doctors failed to recognize this and instead then prescribed:

* topical steroids head to toe after a bath and under wet wraps up to 3x daily 3/13-6/13 (a completely off label prescription practice with alarming increased side effect issues that were not disclosed to me or my husband).

My son is FAR from the exception in such an apparently heavy Total Steroid Load.  Rather, he is the rule.  Because most kids with eczema start the “atopic march” to allergies and asthma.  Doctors didn’t add up all the steroids which were prescribed for my son.  I was concerned about his dropping percentiles of height and weight, but no one else was.  I was concerned about skin thinning, but no one else was; instead proclaiming something along the lines of “out of control eczema is worse than some skin thinning”.  What kind of reasoning is this?!  To blatantly ignore listed side effects and cumulative impacts?!

Besides those side effects listed above, which his body is healing from, we get the highly questionable “privilege” of learning to be positive in the face of adversity while my son goes through a painful topical steroid withdrawal as his entire body learns to re-function on its own without intervention of hormones from an outside source of a drug.  It has been 22 months so far and counting.  He’s better (90% cured was the assessment at his last doctor’s visit), but not 100% yet.

I was excited to read of Maci’s TEAM in this article referenced above and am reaching out to the doctor helping them set up this non-profit to discuss Topical Steroid Withdrawal with him.  But I’m also mystified that this non-profit, in addition to ITSAN, has to exist at all.  They exist solely because of prescription drug inserts being ignored and parents having to be persistent in insisting that something else is going on because of the drugs, not the disease.  My son has been through NUMEROUS bouts of croup and other respiratory viruses and even anaphylaxis since stopping steroids.  And how many times has he needed steroids to “survive”?  ZERO times!  While it may not be the case in every conceivable situation, in each situation that he has been in his doctors have been able to find a way to address the situation without steroids.      

Steroids are powerful  drugs.  Every doctor I’ve met who isn’t a dermatologist acknowledges this and the risks of steroids.  So, for the parent or adult considering a steroid shot or a dose of steroid, or a cream, or a nasal spray or inhaler, please READ the drug insert.  Talk with your doctor to ensure that you are using it (if it is an over-the-counter steroid) or that s/he is prescribing it as the drug insert states and is considering the total steroid load.  These drugs are meant as life-saving drugs for acute illnesses, not as long term medications.

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 3,000 times in 2014. If it were a cable car, it would take about 50 trips to carry that many people.

Click here to see the complete report.

I guessed only a couple hundred people read this blog last year.  My husband’s first guess was 25 and he only increased by 25 increments till he got to 100, then 50 to 500 and gave up!  Anyways, I will work on an update soon as we crossed the 18 month mark and our son is steadily improving.  Soooo much better!  Hooray and Happy New Year to everyone! Thank you for reading!

Healing Topical Steroid Withdrawal More Challenging than an Expedition to the North Pole…

Deems me, after reading this article: http://www.denverpost.com/Sports/ci_26096487/Eric-Larsen-of-Boulder-defeats-his-own-will-on-way-to-North-Pole.

I read this article initially with interest in the amazing strength and courage it took these two explorers to head out in cold, desolate weather and location that I would never want to attempt. But it’s okay to live vicariously through others’ experiences.  Then, as a I read, the words the explorers used to describe their journey resonated with all the emotion and doubt and perseverance I read about daily on our Topical Steroid Withdrawal support group forums. This puts TSW into perspective in my mind:   TSW is more challenging…. much, much more challenging from all – physically, mentally, and emotionally – perspectives. 

The highlights: 

“Larsen sounded dejected in his late April satellite phone update, telling followers to “take the hardest thing you can possibly imagine and do that for 40 days, then make it twice as hard and keep going.”

Hmmm… Topical Steroid Withdrawal.  40 days?  Seriously.  IF ONLY it were only 40 days of the hardest thing you can possibly imagine times two.  Try nine months or eighteen months or two or three years, Mr. Larsen.  I don’t think he’d start his journey… do you?  Congratulations to ALL of us for even starting this journey.

“I tell people I cry my way to the North Pole,” said Larsen, describing a monotonous grind that saps spirit and body. “It’s such a struggle with optimism. It’s one of the most difficult expeditions on the planet that no one knows about.”

YES.  We cry, scream, rant… then cheer, cajole, make deals with ourselves, celebrate little successes that are huge.  OPTIMISM… such a medium size word for an idea that keeps all people healing from the terrible havoc wreaked on the body from steroids going in their darkest hours.  The pictures on the healed page we sometimes visit several times a day… and if we don’t physically visit them, we visit those pictures over and over and over again in our mind’s eye.  The doctors… a mere fraction acknowledge our pain and suffering and healing.  Not having the support of those people who are supposed to be helping us heal further hurts the optimism and doubt cycle.  Family and friends and acquaintances who get tired of not seeing us better just sort of drop out of our lives… or worse, leave in a storm of judgment.  People know our plight… they just choose to ignore it when it gets too messy and long to endure with us.

north pole 2

Desolation of the North Pole – Courtesy of Google Images

“It is a pinnacle. I will continue to receive e-mails about the North Pole expedition even if no one is successful for the next five years,” Aggens said. “The information we send out pretty much says if you want to do this expedition, think again. This is reserved for people with significant previous experience and fully understand what they are getting involved in, and even those guys have a high rate of failure. It is the hardest expedition on the planet, hands down.”

Wow.  The dermatologist support in this community is infinitesimally small so far. The doctors who do support us face ridicule and derision from their peers when they “dare” publish something detailing the known side effects they are seeing more of daily.  And yet, here we are in our community, with over 5,000 people who a) have finished or b) are in the midst of or c) starting this incredible journey that takes amazing strength of physical, emotional, and mental endurance for years.  And with 1% more joining daily despite the known rigors of the journey. AND, we will all get there.  Varying amounts of time, joy, and heartache, but we will get there.

“Personally, I would have given up if it wasn’t for Ryan,” Larsen said. “If he would have said, ‘You know what: I’m not feeling this,’ I would have said, ‘We are out.’ What do I have to gain for being here again?'”

First of all, we would all be still going down the path of more and more steroids or immunosuppressants and worsening and failing health had it not been for a pioneering, fledgling organization named the International Topical Steroid Awareness Network (www.itsan.org).  Thank you, ITSAN.  Second, without support of our new worldwide friends going through the same thing, we would not have the determination and faith to start or continue this journey in the midst of it – thank you to each and every person in our various support groups.  Third, our close family and friends who stick by us through thick and thin of this life changing experience. Thank you for your steadfast support.  And finally, for those of us with supportive medical (western and alternative!) providers by our side – thank you for caring, listening, and offering whatever help you can.

“Those nagging doubts persist through every expedition. It’s part of the quest, suppressing urges to quit. For Larsen, burying doubt becomes easier when the mission is bigger than himself.”

“It’s part of the quest, suppressing urges to quit.”  Powerful statement, that is.  That is truly what over half of Topical Steroid Withdrawal healing is – the ability to suppress the urge to a) call a doctor and ask for the “magic creams” again and succumb or b) avoid the “magic cream or pills” when the doctors insist they are the only thing to improve your condition.  At this point you are faced with trusting the doctor who has supposedly been trained to know or putting your faith in all the pictures and stories you read about people whose skin lives mirror your own and keep that faith.  Eventually everyone maintains the faith.  It may take them a couple of starts after running into bears in the woods or shifting ice, but eventually, they persevere and keep their eye on the ending they expect their life to be.

“Burying the doubt becomes easier when the mission is bigger than himself.”  What are you doing to create a mission for TSW that is bigger than you in this moment?  If you are early on in this journey, maybe you can only imagine this right now.  If you are a little further on, or in between flares, is there something you can do that fits with your personality or abilities?  See this post for another way to make this bigger than you:   https://healingtopicalsteroidwithdrawal.wordpress.com/2014/09/02/empowering-ourselves-through-volunteer-work/.

north pole landscape

North Pole – Photo courtesy of National Geographic

“This expedition is a good platform to talk about important things, and we all need to be reminded that the world is an amazing place and we all have the ability to go out and discover it on whatever level we choose,” he said. “We just need to do it.”

Topical Steroid Withdrawal is a great platform to talk about important things… especially the amazing power of the human body to heal itself from outside imposed hazards.  Every single person needs to be reminded to try and give natural healing like diet, exercise, sleep, and supplements a little more time to work… because they ultimately will make the body more powerful if you give the body and brain the power to heal itself.  Drugs, on the other hand, used to mask symptoms till they maybe go away, or maybe require another drug, eventually cause the body issues it must adapt to.  Years of this chronic adaptation to outside forcing can eventually cause dis-ease in the body.   Healing Topical Steroid Withdrawal is a slow, arduous, soul-wrenching, optimism challenge and journey, but the results are worth it.

A quote good for all TSWers by Amy B. Scher (found by someone in the forum recently!): “Armed with my positive attitude and inherent stubborn nature, I keep my mind focused and my life moving forward. I stop to rest, pout and even cry sometimes, but always, I get back up. Life is giving me this challenge and I will plow through it, out of breath with my heart racing if I have to.” 

Lastly, but certainly not least, this post is dedicated to all people healing from TSW or caring for spouses, kids or parents healing from TSW.  Most especially my fellow TSW Moms and Kids.  My husband, oldest son, and yes, even to me… who have done this journey together with the purpose, each and every day, to get the youngest member of our family to a fabulous state of health.  And my youngest son healing from TSW… my hero, who has taught me so much through this journey.

Empowering Ourselves through Volunteer Work

The past 7 weeks have been hard (originally wrote this August 11). But a light at the end of the tunnel started occurring after a BodyTalk session July 30. A long flare turned the corner. Sleep started happening a little bit again – which had gotten pretty outrageous – L was unable to sleep till sometimes, 5, 6, or 7:30AM! Then he had an anaphylactic reaction to milk on Monday, August 5, which ironically seems to have sped up his healing process at a remarkable, warp speed rate (in comparison to normal TSW healing rates!). He is fine now, I’ll do a blog post on that another time.

Today’s post is to encourage anyone going through TSW to find a way to get the word out about TSW. You see, last year, another caregiver mom, Jill, and I attended the Food Allergy Research and Education (FARE) walk that is held in Denver (and other US cities) every year for food allergy families. I knew of the walk and felt it was beneficial for an ITSAN presence due to it being majorly sponsored by National Jewish Health, who everyone in the US thinks of for eczema, food allergy, and asthma treatment. Here’s us with our informational signs and cards we handed out to people.

Jillian and I at the Food Allergy Walk in Denver, CO 2013, educating food allergy families on the dangers of Topical Steroids.

Jill and I at the Food Allergy Walk in Denver, CO 2013, educating food allergy families on the dangers of Topical Steroids.

This year, with L coming out of a long flare after the one year mark, and then the surprise first time anaphylaxis resulting in not one, but two, epi pen treatments, two ambulance rides – one to the ER and one to the Pediatric ICU for the night – and losing my partner in advocacy to the great city of Chicago, I didn’t know if I had it in me to attend the walk this year. I finally decided I needed to – first to support the great cause (I make a donation to FARE in exchange for getting the table) due to our circumstances this week (the Auvi-Q epinephrine injector saved my son’s life and I found out about it at last year’s walk), and second to not lose a year of awareness for anyone in the Denver area dealing with eczema and looking for answers. I therefore completed my paperwork at 11:48PM Friday night before the walk starting at 8AM the next morning.

When I arrived, at 8:15AM, 15 minutes late since I am still a tired mom who had an itchy TSW kiddo wake up and need me before I left, I got my table. As I’m trying to secure the signs from blowing over, a petite 50ish woman stops and says, “Thank God. You’re here. Finally…[big sigh]” I clarified with a confused, “What?” or something like that. She answered, “I’ve been waiting. My husband died from that stuff. First the skin stuff, then when that didn’t work anymore, prednisone, prednisone, prednisone! All the time. He just kept getting worse, his whole body, his kidneys – they quit and he died.“ “Oh, my, I’m so sorry” I express with deepest appreciation and concern for her story and her husband. She continues, “I’m just so glad you’re here. I’ve been waiting for the day someone tells people about these drugs.”  

Coincidence? I think not. I think that the Universe decided to give me a sign that all the tired and heartachy feelings of late had a purpose. To get me to this walk to get the word out. I know that I met a 40-ish man who he and his wife read the posters and he knows he’s dealing with Steroid Induced Eczema and finally has a cure after living for 8 years on prednisone for a… wait for it… RASH on his FOREARM that… is NOT cleared on topical steroids or oral prednisone! I know that I met a young man who saw that Topical Steroid Addiction/Steroid Induced Eczema is what his step father is dealing with and was going to pass on the information. I know that there were three families with young children who now suspect TSA. I know that I educated at least 100 more families about the risks of topical steroids. I know that a pediatrician for an office in the 5th largest city in Colorado stopped and got the ITSAN information and was going to do more research. I know that another doctor received our information and she talks with food allergy (and thus probably eczema) families all the time. I know that an allergist for a large allergy and dermatology clinic in the area was pissed I was there, yet, said, “Yes, steroid sensitivity, I know all about it” when his friend was chatting it up with me and asked the allergist if he knew what I was talking about.

So this lady’s devastating story of the loss of her husband due to initial topical steroid usage for a rash that continued to get worse and worse and worse was scary to say the least and a travesty on the part of the medical profession that they couldn’t see that the drugs were causing the problem.  And might have been my now 4 year old amazing son had we not discovered ITSAN when we did.  I see children daily whose parents choose National Jewish Health or other doctors who state they will “taper” these drugs for our children, but in the meantime prescribe in what is called an “off-label” prescription practice – under wet wraps, over 20% of the body, more than 1-3x/day, for more than the recommended 2 weeks’ usage. What is truly a problem is that the doctors never inform these parents that these practices increase the child’s risk for serious, adverse, possibly debilitating or life threatening reactions.  And then when the drugs quit working, their doctor’s only response is to switch to oral steroids, or steroid injections, or immunosuppressants used for cancer or organ transplant patients, because obviously, their child is “one of the worst cases the doctor has ever seen”.  

I know that I was meant to be at that food allergy walk, as exhausted and overwhelmed as I was.  My being there made a difference for many.  Not the least of which was for my own mental and spiritual well-being. Making the best of the 14.5 month journey our family continues in supporting our youngest son. Benefiting others so that they may avoid this journey and find one that is a healthier option earlier on.
*********************************************************************************************
So… What are you doing to spread the word about the risks of Steroid Induced Eczema? Some people are writing blogs, for instance: http://beyondtheitch.wordpress.com/; others are posting YouTube videos: https://www.youtube.com/watch?v=bAflPJV-wrI ; some are starting Facebook groups: https://www.facebook.com/groups/848237715204154/; some are drawing artwork and sharing online: http://kimherbst.tumblr.com/post/95604236519/new-personal-piece-that-shows-how-ive-been and http://kbrechtel.tumblr.com/post/86835896978; some are posting the new IMIA symbol in a school mural: https://www.facebook.com/ITSANMIA/photos/pcb.715010991901374/715010671901406/?type=1&theater (see the heart and hands picture); some have started the ITSAN Moms In Action group: https://www.facebook.com/ITSANMIA and http://www.itsan.org/get-involved/itsan-moms-in-action/. (Just a small sampling from the TSW community of people’s efforts to document their TSW journeys.) If you are an 18+ month TSW vet: Please go post your story at ITSAN and check in to offer some words of wisdom or hope!  You are our inspiration and hope for the future!  For other ideas, you can look here: http://www.itsan.org/get-involved/volunteer/. Additionally, you can message me if you are interested in helping the IMIA Moms to complete some of their many, many projects that are being created to help families deal with doctors, schools, other caregivers, and child protective services. It truly is empowering to know that you are helping to prevent more of this from happening.

Feel free to copy, paste, and share this image!  One of IMIA's first accomplishments!

Feel free to copy, paste, and share this image! One of IMIA’s first accomplishments!

One Year Anniversary! YAHOO!!! And Contemplative…

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.

Image

Ankle – 1 year progress

Image

Tops of feet – 1 year TSW

Image

Back of knee – 1 year progress

Image

Neck – 1 year progress – can see the irritation in the folds and the slight pink and flakes around neck and up chin to face

Finally playing in the hose occasionally!

Finally playing in the hose occasionally!

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.

Image

Climbing at Mt. Falcon Open Space – 1 year anniversary and Father’s Day trip – able to now spend about an hour outside before getting itchy

Image

Cinnapie with Anniversary candle still there. Big brother, who has developed patience and compassion beyond his 7 years in the background.

Startling FDA Memos Found

I’m reposting this from my friend in the UK.  Interesting finds about the dangers that the FDA KNOWS about topical steroids and HPA Axis Suppression – from as little as ONE course of treatment!   Please read!

http://topicalsteroidwithdrawal.blogspot.co.uk/2014/05/interesting-report-from-fda-about.html

 

Our Story – from the beginning

L’s skin and body became addicted to topical steroids used to treat his eczema and he has been going through withdrawal since June 17, 2013.  He is healing daily and will ultimately be completely healed, but steroid addiction is common and often undiagnosed.  The condition is called Steroid Induced Eczema, Red Skin Syndrome, or Topical Steroid Addiction/Withdrawal. 

Both boys had eczema as babies.  J outgrew his eczema by two years old.  L’s never resolved despite removing allergens from his diet, using creams, baths, humidifiers, natural clothing, soap, etc.  The expert dermatologist and allergist we took him to just kept putting him on different types of topical corticosteroids.  Most know of these topical steroids – hydrocortisone is an over the counter one used by most of us at one point or another.   Although I questioned repeatedly the safety of using these long term, I was reassured by the expert allergist that this was no problem.  We ALWAYS used them according to directions given – use for no more than x days (depending on the steroid this was 3, 7, or 14 days), then take a break of a minimum equal amount of time (often the breaks were for much longer than the minimum).  L’s eczema continued to get worse.  Last Christmas, 2012, the skin on the tops of his feet was so thin and fragile that the slightest rub caused a hole in the skin, so I took him off the steroid creams completely since they were no longer working and skin thinning was a documented side effect.  Little did I know what was to come. 

L looked great initially and then slowly but surely refused all creams and lotions he’d traditionally been okay with, refused baths because they stung, and became covered by a whole body rash.  By March 12, 2013, he was swollen, red, and flaking/peeling like he was a sunburn victim whose skin was peeling.  He was itching head to toe uncontrollably.  He was so swollen he looked like he’d been stung by a hive of bees.  After seeing our pediatrician, we took him to the triage unit at one of the leading hospitals for allergy/eczema in the US which, we thought luckily, was here in Denver, where our allergist (who is considered an expert) was, and was told that he had bad eczema.  We were directed to reinstitute baths and steroid creams – this time one type of steroid cream for his scalp, one for his face, and one for the rest of his body, and cover him for two hours three times/day in wet wraps after the 3x/day baths.  Despite the screaming from the baths stinging his skin, his skin and sleep improved within a few days, and we thought all was well, despite the questions that remained as to the cause of his terrible “eczema”. 

 

Within a month of instituting the new protocol, I began noticing that whenever we tried stopping the face and scalp steroid creams as we were instructed to, his face would start to swell and get red again.  I was informed that this was his eczema returning and instructed to start using the steroids again.  This also happened on his body, but the immediacy and severity of the reaction was less intense than the face.  Per the expert allergist’s direction, we were doing one to three baths daily, then applying either steroid or moisturizing creams, and applying wet wraps, depending on the condition of the skin on each part of his body.   We were exhausted.  Taking care of his skin took a minimum two hours a day to deal with. 

Image4 weeks prior to stopping steroids – The face swelling started within 24-48 hours of stopping the steroids. Read More…

Follow

Get every new post delivered to your Inbox.