Update and TSW Treatment

Gabe started topical steroid withdrawal in mid-February of this year so he is 4 months in.

The bright red skin of the first two months has faded and now it just looks like he has horrible eczema/was in a car crash.  The areas that still look really awful are where we applied steroids the most and longest- wrists, feet, ankles and legs.  His face is flaring though we never really applied steroids and he never had eczema there.

His energy levels are still maybe 35% of what they used to be.  He still spends a lot of time sitting in his favorite spot, the recliner.  He is able to be active and enjoy some quality of life thanks to some supplements we do everyday.

Right now what is really helping him is astaxanthin.  It’s a super potent antioxidant that is reportedly 6,000 times more powerful than vitamin C!!  I carry him out of bed in the morning and after breakfast he chomps up a 12 mg capsule of astaxanthin and within 10 minutes he is feeling 80% better and is able to get up and run around and be a normal kid.  His mouth is perpetually stained orange but it works!!  Astaxanthin is a naturally occurring antioxidant found in red algae (and sea food).  It’s what makes flamingoes pink!

We still give him CBD oil (yes, from marijuana) when his pain and anxiety levels are very high.  We give him 3-4 drops and he holds it in his mouth for 30 seconds before swallowing.  It really helps him and the benefits go behind pain relief.

We also give him detox baths every other day.  Epsom salts, dead sea salts, lavender oil and sometimes a bit of bentonite clay.  He likes the water very hot and even though it usually stings at first, he never wants to get out.  It’s the only place he doesn’t feel pain or itchiness.

Gabe also take probiotics and drinks a lot of kombucha.  He is constantly asking for fruit so we try to stay stocked up.

His sleep is still a nightly struggle.  So 1-2 times a week we give him 10 mg of hydroxinine to help him get some uninterrupted sleep.  We get a break and he gets to sleep through the night without shredding up his skin.

I just ordered liviaone topical probiotic spray and I am pretty excited to try it out.  I really think it will help Gabe heal because of so much of what he’s been through (similar to most people with eczema/TSW) destroy good bacteria on the skin- the steroids, the antibiotics, and bleach baths…. that I really feel he will be able to heal much more quickly with the introduction of healthy bacteria to his skin.

What I’ve tried that hasn’t been successful-

A high grade sodium bicarbonate (baking soda).  There is a lot of buzz about safe soda helping people heal very quickly on the TSW pages.  Problem is, this stuff is super expensive and hard to get.  I tried what seemed to be a similar alternative but without success.  I haven’t ruled out safe soda but it’d be painful to spend $60+ on a small contained of baking soda.

Essential oils.  I’m a huge user of them.  I’ve used them near daily for the past four years.  I just can’t put them on Gabe because his skin is so sensitive that they make him worse.  A couple drops in the tub is ok, applied topically just seems to be too much.

Homeopathy.  Granted we went right in the beginning and we were exhausted and overwhelmed.  We left with like 20 supplements all with complex directions.  Half of them were pills that he couldn’t even swallow.  It was basically a waste of $500.  It probably would have worked better later on in his treatment and if it was more simplistic and doable.

 

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.

This was about 1 1/2 months ago.  Yep, RSS is that horrific.

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

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. 

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. 

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 

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.

 

 

One Day at a Time

This has rapidly become a “TSW” (topical steroid withdrawal) blog.  I know, I know.  Just shy of three weeks ago we were thrust into this world we weren’t aware of.

Now I look back and I can see that at least 90% of Gabe’s “eczema” we’ve been treating for ages was, in fact, actually symptoms of damage and addiction from the creams we were using.  How horrible is that?

It is vindicating to me, in a way; as a more natural-minded type of person.  I never wanted to use steroids anyways.  I did when I felt like it was the only option.  Now I know there are so many natural ways to treat eczema.

It’s a difficult process to go through any sort of withdrawal.  Though topical steroid withdrawal is particularly brutal.  Many adults going through this have gotten to lows where they are suicidal.  Because the pain is that bad.  The itch is bone deep.  You can go days without more than a few hours of sleep. Your skin looks absolutely horrific to the point where you don’t want to leave your house.

I feel like we have been extremely fortunate in that Gabe is still sleeping relatively well.  He is doing very well emotionally.  He seemed ok to me but I wanted to make sure and I was asking him questions about how he was doing “on the inside” with all of this.  He didn’t know what I meant so I said, “does going through all of this make you feel sad?”  He looked at me like I had asked him an inane question, “of course not, why would it?”  He has had a good deal of pain and discomfort but he has taken it in a stride.  He is handling everything so well.

We’ve been doing everything we can to help his body heal.  He was on antibiotics because his skin had gotten “staphy” at one point early on.  He’s been drinking a lot of kombucha to help build up his good bacteria.  I’ve also made a couple pots of super healing soup.  The combo of bone broth, veggies, and spices is so good for him…and it tastes good too!

We did get great news from the dermatologist we saw last week.  She has swabbed Gabe to check for pathogenic bacteria.  I was actually shocked when it came back negative.  She said Gabe had normal skin flora and that the Doctor said she thought our regime is working well, and to keep it up.  That is huge because the main risk now would be from a serious secondary infection (from staph or step) until his skin is in better shape.

We were doing two baths a day when he was in really rough shape.  Now we just do one, at night, with warm water, sea salt, ACV, and lavender oil (we avoid soap cause it dries him out).  After his bath I put on coconut oil, Egyptian magic, clove oil (just two drops, heavily diluted) and silver gel as needed.  Our magic potion ingredients- 

I’ve read that there isn’t much you can do to speed up the process of withdrawal.  But I don’t think that’s true.  I’ve scoured so many blogs and articles and I really think that you can aid the process of healing along in many ways.

A huge way to hasten recovery is with positivity.  I’m a faith person so I believe 100% in the power of prayer.  I know Gabe has so many people praying for him and that has carried us through to this point.  I also believe that our faith has kept us positive and joyful, even during our worst moments.  We are looking for and celebrating every sign of improvement.  We are looking on the bright side.  We are practicing thankfulness.

He is showing improvement.  I don’t want to jump the gun, because I know that recovery is cyclical, but we are happy, nonetheless.

This was his back about ten days ago- 

This was him today- 

His neck and torso were initially the worst spots.  Now they are looking much less red and inflamed.  Though it seems to be working it’s way out, down to his legs and up to his face and his hands.  His legs are almost purplish as the blood vessels are very dilated.

“One day at a time” has been my mantra and that is how we will continue to handle this.  We will do everything we can but ultimately trust that we are doing the right thing and that God is sovereignly guiding this process.

The good that has come has been that we have drawn closer together as a family.  We now finally know the cause of Gabe’s ever-worsening “eczema” and more importantly, we know what to do.

Strength in Joy

This process of Gabe going through topical steroid withdrawal has been the hardest thing my husband and I have ever gone through.  A difficult and painful road, and made so much worse by the fact that the medical community refuses to acknowledge the scope of the problem (or even that it exists).

Trying to explain to Gabe’s school was difficult, what do you say?  My child can’t come to school because his skin is raw, peeling off, and he can barely move?   Is it his eczema?  No…. it’s steroid induced red skin syndrome.  Just try explaining that succintly.

The first fews days we were in total crisis mode.  Gabe was in very rough shape.  Now, thankfully, things have calmed down quite a bit though Gabe still deals with a lot of pain and suffering.  We still have to coax him into the bath because his skin is so raw it is sensitive to the slightest touch.  He wakes up in a literal pile of dead skin, as his skin is shedding faster than we can keep up with.  He still needs helps getting out of bed and getting into the tub.

But, like I said before- we have hope.  This condition is as simple (though agonizing) as letting the body heal from the steroids.

I pulled this picture from the ITSAN website….

This little girl recovered.  Gabe will too.

In the midst of this storm though I have had an almost irrational joy and optimism.  I think this is what it feels like when God goes through the fire with you.  The flames are real but so is His peace.  He never lets go.  Even when we doubt and fear and blame him.

“This day is holy to our Lord. Do not grieve, for the joy of the Lord is your strength.” Nehemiah 8:10