Beginners Guide to TSW

I’m writing this guide to help the many who are starting their TSW journeys.  I’m writing this because you won’t get much help from the medical community or even alternative medicine practitioners.  I’m writing this purely to help.  I am not affiliated with any of the products I recommend.

I’ve read blogs and watched videos from people who healed quickly and are giving out advice but they had only a short period of T.S. (topical steroid) usage.  Well, no wonder, right?  I’ll give a short back story so you can know that we have dealt with severe TSW.

My son used hydrocortisone for a couple years and then fluocinonide for about a year.  During this time his health deteriorated.  He developed asthma and had multiple rounds of pneumonia.  He always had dark circles around his eyes.  When we asked his dermatologist about it she prescribed protopic to rub onto his eyelids. (insert forehead slap here!)

After a month on oral prednisone in an attempt to clear up very serious pneumonia, Gabe developed full scale red skin syndrome.  At that point he was getting red rashes on his torso and they would go away if we applied the fluocinonide.  Right before we discovered topical steroid addiction we were applying the super potent steroids AND protopic and sealing it up with plastic wrap in a desperate attempt to get his skin under control.

Gabe was exposed to a lot of steroids and went through an extreme withdrawal. When we discovered TSW (or RSS or TSA) we knew we had found the answer but had no idea what to expect or how bad it’d get.

In these two pics you can see how he looked in the first week.  His skin turned bright red, obviously.  You can see on his neck in the second pic how bad the oozing was.  It was running off like water.  I’d go to pick him up and his clothes would be practically drenched.

This is normal TSW and happens because the steroids work by shutting down the blood vessels close to the skin.  It calms the bodies own immune response and seemingly fixes the problem.  But when you’ve used for a long time and you suddenly stop, those blood vessels flood with nitric oxide.  You get bright red, angry, hot, oozing skin. Though people of color never get red skin, their skin gets several shades darker.

At this point we brought him back to the dermatologist.  It was a mistake.  Don’t expect much help from your derm at all.  They wanted to hospitalize him and slather him head to toe in steroids with a steroid drip to treat his “infected eczema”.  We stormed out.

We were able to find a much more sympathetic dermatologist who wrote us a school note for why Gabe couldn’t go to school.  Even she wouldn’t come out and admit it was TSW.  She wrote it as “severe eczema”.

You need to find doctors you can work with but don’t expect any miraculous breakthroughs or much help.  The dermatologists do largely know about TSW but either they don’t care or they hide behind a thick wall of denial.  They aren’t about to completely overhaul the way they practice and admit that their care has made so many people not only worse but desperately ill.

If you’re a parent of a child going through TSW it’s important that you establish that you are seeking medical attention for your child.  Make it clear that you aren’t refusing treatment, just steroids.  Ask that steroids be listed as an allergy on their chart.  Call their school and do everything you can to work with them.  You need to cover your butt because there are nutjobs who troll support groups and report parents to CPS.  You may even face a lack of understanding in your own family.  You need to have this proof that you are getting your child the help they need medically because the last thing you need is CPS opening an investigation.

Speaking of nutjobs…avoid the Dr. Aron people.  Not all of them are like this but there are a select rabid few who troll the recovery groups and try to deter people from the true path to healing.  The Dr. Aron method is not magical by any means.  It’s a quick fix and it doesn’t address the underlying problem- the addiction to the steroids themselves!  Many of them are stuck applying a concoction of steroid and antibiotic lotion 5-6 times a day.

When you do see your doctor you can ask for prescriptions to help you through this TSW hell.  Hydroxyzine (atarax) can be helpful to get some actual sleep.  We use it once in awhile because daily use was making our son incredibly irritable and depressed.  Like most drugs, it can be helpful but it has side effects.  We have a bottle of tramadol as well, for days when the pain is just too much.  Many use gapapentin or lyrica for nerve pain.  It is also helpful to have a script on hand for antibiotics in case of a sudden staph infection.

Depending on your usage and history you may need to take an extended leave or even quit your job.  My son required so much care that I quit my part time job to take care of him.  If you’re single, you may need to move back home.  Do whatever you can to enlist help and support to help you get through this.  My son missed months of school.  We did a homebound program where a teacher from his school came out and spent an hour a day with him so he wouldn’t fall too far behind.  It was necessary because he basically spent months in this chair unable to walk. 20170518_221523

You’re going to be utterly exhausted and afflicted with terrible insomnia.  The T.S. didn’t just affect your skin.  They were your supply of cortisol and adrenaline so your body simply stopped making it’s own.  It’ll bounce back but it’ll take many months.  In the mean time you’ll probably watch every episode of every show on Netflix in the wee hours of the morning.

Just about everything you experience is “normal”  Swollen lymph nodes, chills, edema, crust, ooze…all normal.  My son swelled up and was constipated for the first time in his life the first week of withdrawal.

What you need to familiarize yourself with is signs of infection.  Google “impetigo” and “eczema herpeticum” and get very familiar with how it presents so you can catch it early if (or when) it happens.

Virtually all TSW people have a major staph (staphylococcus) overgrowth problem.  The steroids actually enable the staph to grow out of control and further colonize your skin.  The best bet in beating it is building up your immune system, not tearing it down.  Steroids are a quick band aid, and actually make the problem so much worse in the end.  Same with immunosuppressants.  You need to get healthy so you can actually heal and stop covering up the problem.  Many people do bleach baths (a 1/4 to 1/2 cup regular bleach in full tub) to reduce the staph on their skin.  We also used liviaone probiotic spray off of amazon.  The good germs help coral the bad ones.  I wash my hands carefully after treating Gabe or I get staph bumps.  I wipe down commonly touched surfaces with Lysol wipes and I clean his tub with bleach pretty frequently.  Nothing else kills staph.  Believe me I’ve gotten infections to prove it.

Regarding immunosuppresants or “immunos” this option should be an absolute last resort.  I’ve read many blogs of people who used immunos and it made their symptoms much better until they stop using them and they are virtually back to square one and need to start withdrawing all over again.

20170705_114604The absolute best thing you can do is support your health, not undermine it.  Especially since your immune function is already very compromised.  At one point my son contracted the measles from being around a toddler who had recently had her MMR shot.  That was four days of sheer hell.  So be aware that you are immuno-compromised and that risk is there.  For heavens sake don’t get any vaccinations.

After you go through the bright red skin phase you’ll go through different phases.  It’s helpful to take pictures so you can document your progress.  I took pictures of my son at his worst.  For evidence in case we ever file a lawsuit for the harm inflicted on him by negligent doctors and also to encourage us that he was making progress.

At his worst his legs were actually purple.  He looked like a victim of radiation poisoning.  20170707_204127The areas that were hit the worst were the ones that had received the most T.S. over the years.  But it really affected his entire body.  From the swelling and bacterial infections he lost virtually every single finger and toe nail.  In this picture you can see that chunks of skin were rubbing off while the skin underneath was still too raw.

In TSW it’s like you’re a snake and you shed your skin every single day.  There’s just going to be skin everywhere.  We still (8 months in) vacuum nearly every day.  I wash his blankets every day.

We use $5 fleece blankets from Walmart.  He sleeps on top of one with another one covering him.  Then in the morning I can easily roll them up (to contain the crust) and toss it in the washer.  It’s so much easier than stripping off sheets and all his bedding every day.

Speaking of laundry, switching to a free and clear detergent is helpful.  I wash my sons clothes and blankets in a natural powdered detergent and use white vinegar as a rinsing aid instead of fabric softener.  Vinegar helps deodorize and soften fabric, as well as getting all the soap residue out.

“TSWers” argue big time about the importance of diet and even what diet is best.  My thought is that the body needs the building blocks of a nourishing diet to properly heal.  This is not a time to go on a ridiculous diet.  You need extra protein.  You need a lot of healthy fat.  Avocados, grass-fed butter, bone broth, fish, nuts, etc. you need a balanced diet with the amino acids from complete sources of protein.  You also need antioxidants from fresh produce.

Because your adrenal glands are already completely slaughtered from the steroids you want to avoid further stressing them with sugar, alcohol and caffeine.  I’m willing to bet virtually all TSW people also have candida overgrowth from antibiotics and a weakened immune system.  The candida is a nasty yeast that lives on and in you and it feeds on sugar.  We noticed that our son got instantly itchy after eating sweet treats.  We cut way back and he felt much better.  We noticed his anxiety levels went down as well. Sugar feeds the yeast and it also depresses your immune system.  So it’s extremely wise to limit it, even in the form of juice and fruit if you believe you have candida overgrowth.

Probiotics can also be very helpful in healing your gut and aiding in your healing.  Other supplements we have found very helpful with Gabe have been astaxanthin (a super antioxidant), powdered super greens, vitamin D3, and CBD oil.

I see a lot of questions about CBD.  CBD is cannabinoid oil and it’s the medicinal part of the marijuana plant.  It won’t get you “high” and it’s legal in most states.  It helps with inflammation, anxiety, pain and insomnia.  It was extremely helpful in the first few months for us.  Gabe would be exhausted and in so much pain until I gave him a few drops of his CBD and he would be able to get a few hours of peaceful sleep in.  Or he’d be able to get up and move around a bit.  I ordered mine here https://www.anandaapothecary.com/shop/cbd-formulas/

We’ve just lately found Maxasorb BioActive Vitamin B12 Cream to be very helpful.  I apply a few pumps all over his body after his bath and he perks right up.  His skin is also less red since we started using it.  It has also never stung or irritated his skin.

Just this week we tried alkaline water for the first time.  I heard about it on the ITSAN support group and decided to try it.  It’s already made a world of difference for him.  He has much more energy and much less itching.  I highly recommend it.  I found our first bottle at Target and ordered a case of Essentia brand water off of amazon.

We have also done warm baths with either dead sea or Epsom salt nearly every day.  We do salt because it cleans the wounds and is very healing for stressed adrenal glands.  One trick we’ve found to get around the water stinging is applying cocoa butter right before he gets in.  When the skin is very dry even water stings.  The cocoa butter acts as a buffer until the skin can get used to the water.  The bath was great because for Gabe it was, for a long time, the only escape from feeling pain and itchiness.

I like cocoa butter as a moisturizer because it is very gentle.  It is a saturated fat so it is unlikely to go rancid.  It also has a warm, chocolately scent that can be useful in covering up that oozey smell.  I order my cocoa butter off of amazon.  It comes in a big brick.  I put in in a glass container and melt it as needed with a hair dryer in my bathroom.  It only takes a minute to melt what I need.

We’ve spent lots of money on eczema creams and potions and it’s pretty much a waste.  We used a lot of Vaseline and aquaphor early on but realized it was making him itchier and drier.

Your skin will go through a lot of changes and you need to find what works in each stage of TSW.  Generally, using products with less ingredients is better.  You can even rub something as simple as olive oil on your skin.  Whatever you use it can be helpful to add essential oils, which can act as a natural antiseptic with healing properties.  Thyme, lavender, tea tree, frankincense, and clove are all very good.  I buy my essential oils from plant therapy or ananda apothecary.  You just need to make sure that they are properly diluted. When my son is very upset I put a few drops of lavender in his bath, mixed with his bath salt.  I also put a drop of aura cacias “pillow potion” on his pillow at night.  They don’t work miracles but they do help.

Early on we also used a lot of zinc cream.  Zinc is very protective and can offer some relief to very raw skin.  We liked sudocrem (bought from Walmart online) but you can grab a good diaper rash cream and it’ll do the same thing.

Some people advocate for moisture withdrawal.  We haven’t tried it with our son, because it would be too painful and difficult.  It seems to be helpful in the later stages in teaching your skin to make it’s own oils again.

Getting through those first months is so tough but you can take comfort in knowing that so many warriors have gone before you.  At our low points I probably read the success stories on https://itsan.org/rss-images/ ten times.  My son and I also enjoyed Briana Banos funny and educational videos on youtube.

The best advice is to take it one day at a time.  No one knows how long your healing process will take but you can do so much to make it better and shorter!

At this point my son is getting more and more clear.  He is back at school for half days.  He is starting to get back to normal life.  He’s gone from this terrible “before” to this “after” in just six months. 18010182_10158675908895074_4895123062797969444_ngabebabeHe still has a way to go but we know he is well on his way to being truly healed…and tough as it is, you’re on a journey to being completely healed as well.  Thank you for reading and God bless you.

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Spring, Sadness, Hope

I watched this video yesterday and broke down crying.  It pulled on my heart strings because I know exactly how each of the moms feel.  You struggle privately and have to put on a brave face for your kiddo.

Going through TSW is incredibly isolating because it isn’t a well known condition.  People have never heard of it.  Whenever I post updates or pictures I always get people saying things like, “OMG!  That’s an allergic reaction!”  or “coconut oil took care of my small patch of eczema!”  Insert head-slap here.

Also not particularly helpful is reaching out to the mother of a sick child….trying to sell them something as a MLM distributer.  We’ve tried every lotion on the planet at this point, I’m sure yours isn’t going to be the magic bullet that will end his suffering.  But….um thanks for offering??

Or posting progress pictures.  I always point out that’s he still has a long way to go.  But still people “be like” Hallelujah!  He’s finally healed!!  Um…slow down.  He’s still very much suffering and going through this.  I just like to post pictures when there is any progress to encourage myself and let everyone else know how he is doing.

Speaking of that, he has come a long way.  When you deal with something like this it is easy to fall into hopelessness because it just goes on….and on.  He’ll make major progress and then flare again.  Our hopes will rise, then get squelched.  But I know every single day we weather brings us one day closer to him being healed.

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This was about 1 1/2 months ago.  Yep, RSS is that horrific.
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That’s him now.  Not healed but making progress!

At the moment he is flaring on his face pretty badly.  He doesn’t want to leave the house, because he is so embarrassed.  He’s lost weight off of his already very skinny little body.  In spite of seemingly eating 24/7 he is very thin and his clothes hang off of him.

I also believe he is healing on the inside too.  His organs became steroid dependent as well.  Every morning he has a hard time getting going.  We need to carry him out of bed, get him breakfast, and then bathe him.  I still need to wash all his bedding every single day.  Because every night it gets bloody and crusty and covered in his dead skin.

We are hitting this thing from every possible angle.  Probiotics, vitamins, homeopathy, bone broth, garlic, sea salt….just every thing we can do to help him.

That’s been our focus and it’s really brought us all together.  I feel closer to my husband than ever.  I thank God for our solid marriage.  He has been my partner in this 100% and is so quick to sacrifice for his family.

Most days we are doing pretty good considering.  When you’re going through a long term crisis everything else get’s backburnered.  We barely celebrated Easter.  We haven’t really been able to go to church in ages because it takes so long to get Gabe going in the morning.  I was ok with that until I drove past a cross with ribbons billowing in the wind the Monday after Easter.  I felt an unexpected tidal wave of sadness at not being able to celebrate my favorite holiday the way I would have liked.  It threw me into a bit of a depression for the rest of the week.

But I know that next year will be totally different.  Next year we will go all out for Easter.  Next year we will properly celebrate our Anniversary.

We know that our faith has carried us through this and also all the many prayers offered up for Gabe.  Thank you everyone for your continued support and prayers!!

Rebirth

It’s a bit gloomy here (spring is always dicey in Minnesota!) but there are undeniable signs of spring.  I can hear birds chirping right now and the sun is trying to peek out.  I have been so happy because I love spring so much.  The winter here is long, cold and dark.  It isn’t even just the weather though, it’s that spring is such a symbol of new life and rebirth.

Spring always brings fresh life spiritually as well.  I love Easter and all that it represents.  Ten years ago it was spring when I finally let God in and had the most joyful season of jubilee that I will forever be marked by.

My life is a bit crazier than usual at the moment.  I am in a full-time caregiver role to my son who is navigating red skin syndrome.  He is mostly bedridden.  His hands, wrists and legs are the hardest hit.  So much so that walking or even writing with a pencil is difficult, and at times impossible.   He is also struggling with insomnia so he is often very tired and cranky.

I know it is so imperative that I stay positive and joyful as his caregiver.  Positivity is HUGE in healing.  https://www.psychologytoday.com/blog/owning-pink/201112/can-positive-thinking-help-you-heal  I need to create an atmosphere of positivity to help Gabe cope with his pain and frustration.  Also, I need to stay positive to cope with being thrust into a very intensive caregiver role.

I had been really struggling.  Big time.  I was just succumbing to the negativity in my circumstances.  It wasn’t just everything Gabe was going through.  We all got sick for a ridiculous amount of time, two rounds of back to back flu.  Plus my youngest acting out to get more attention (can’t blame her).  Plus family drama.  It was just a lot to deal with.  And when I feel like that I inevitably start getting angry with God.

God is good and loving and generous and all that.  But there are seasons where he really wants to mature us.  He wants us to seek his face, seek HIM, and not all the wonderful blessings he bestows.  We all get our “Job” moments.

I feel like I’ve gotten more than my fair share….but then I realize God had also bestowed such underserved favor and blessing on me as well.  I have SO much to be thankful for.  SO much.

I decided to really embrace joy and walk in trust and joy has been bubbling over.  I have been ecstatic.  I’ve been really happy.  Really.  It’s proof that we can be joyful and thrive in our faith even when circumstances are beyond difficult.

“Rejoice in the Lord always: and again I say, Rejoice.” Phil 4:4

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Gabe is doing pretty good at the moment.  I discovered a new very promising therapy for him, cannabinoid oil.  I had been applying it to his skin without much improvement but then I decided to give him a drop internally.  Wowza!  He showed a huge improvement.  He was happy and walking around and playing, which is kind of a miracle at this point.

Unfortunately I had already used most of the bottle on his skin so I ordered some more this morning.  If this process has taught me anything it is that we should look to natural cures and therapies that work with the body instead of against it.  Many people take steroids (which shut down the bodies inflammatory response) then when that stops working they get immunosuppressant drugs which shut down their immune system.  We were perscribed such immune-destroying drugs but I’m so glad we didn’t use them.

In closing, please know that there is a God in Heaven who loves you.  He created you.  He uses both the good and the hard things to get your attention, to make you look upward.

“No, in all these things we are more than conquerors through him who loved us.” Romans 8:37

 

 

Getting through this Season

I wanted to write another update on Gabe, because I haven’t for awhile and people ask how he is doing frequently.

It’s 6 weeks in and he is still in the hardest stage.  People keep asking, “is he better yet?!”  No, he isn’t.  It’s a long, painful process and it just takes time.  No, it isn’t an allergy.  No, it isn’t eczema.  There is no magic bullet.  His body has to withdraw from the powerful steroid creams.  That is a painful and difficult and long process. 20170322_133757

The withdrawal started on his torso and neck but has worked it’s way down to his legs and arms.  His neck and torso do look a lot better at this point.  His legs look awful.  They are by far the worst hit, because they received most of the steroids over the years.  They are so dark they are almost purple.  Every night we have to wrap his legs in bandages so he doesn’t shred them.  Every night those bandages are soaked in blood and ooze. 20170322_134059

Because of the rough shape his legs are in, and the toil the withdrawal is taking on his overall health, he can’t walk at this point.  Well, not more than a few steps here or there.  We carry him around the house.  We are almost housebound.

We’ve been dealing with not only this but two rounds of the flu.  Plus, a certain neglected 4 year old decided to stop going #2 on the toilet for a week.  It was a week of negotiating and cleaning poo out of her clothes and off of carpet, walls, the ceiling (JK)… and on top of that I’ve been dealing with hurt over a lack of support through this, from the people I’ve supported in the past.

Plus most days we are exhausted because Gabe isn’t sleeping super great and needs treatment or just support through the night.

They say when it rains it pours.  It can get hard to stay positive and I’ve done my fair share of crying alone in my closet.

Hurt and disappointment seep in and have a way of hardening the heart towards God.  I woke up a couple days ago with the thought resounding in my mind, “you have an enemy and it isn’t God.”

God doesn’t cause the pain or hardship however he allows it.  Pain can be a powerful impetus for change.  I know I have quite a few “weeds” in my life that God wants to prune away.

 “But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.  We are hard pressed on every side, but not crushed; perplexed, but not in despair;  persecuted, but not abandoned; struck down, but not destroyed.” 2 Cor. 4:7-9  joy-comes-in-the-morning

Yes it hurts, and it’s hard.  But we know that we will get through this.  We know that God is for us.  We know that there will be a rainbow after this storm.