Crown of Life

I’ve been in that familiar place again, battling discouragement.

My son has been battling for so long.  First eczema.  Then topical steroid withdrawal.  Now residual skin infections and rashes that don’t seem to budge for nothing.

God only knows the pain we’ve experienced.  I say “we” because there is no pain like watching your baby suffer.  God only knows the tears.  The cries.  The sheer wretchedness.

The battle rages on.

I was reminded recently that sometimes there aren’t any words.  Or at least, words that should be spoken.  I was talking to a family member about trying to find God’s purpose in suffering and was barely even able to speak my piece before being barraged with a tidal wave of insensitive, unwanted advice.  When someone has been through a trial like that, really- they just want to be heard.  I know it is in our human nature to try to give a quick answer (when there isn’t one) and sometimes trite words of wisdom do far more harm than good.  I’ve had to wrestle through anger and just sheer weariness.  So please, if you know someone going through a tough trial; just be there for them.  Don’t pretend like you know what they are going through or dish out advice.  Just listen.

“Rejoice with those who rejoice, weep with those who weep.” Romans 12:15

I try to be gracious because, really, sometimes we just have no idea.  I know I can look back on some things I said and did that were horribly insensitive, just because I simply didn’t know.  Walking through heartache, especially an extended season where there’s no end in sight, has a way of bringing humility that can’t be gained any other way.

What God has been speaking to me lately has been about the crown of victory.

“I am coming soon. Hold on to what you have, so that no one will take your crown.” Revelation 3:11

If you are a believer, you have an incredible inheritance.  You are already seated in Heavenly places.  You have a crown and you are royalty.  God wants you to become an overcomer.  If we didn’t have battles to fight, Goliaths to overcome- our stories wouldn’t be very interesting, would they?  We have a crown on our heads but a sword in our hands.  There are battles to be fought, giants to be defeated. 93cc36ecef5a2ed8211337bd08e96c82

Keep your chin up.  Keep fighting.

“You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book….Therefore we do not lose heart. Though our outer self is wasting away, yet our inner self is being renewed day by day. For our light and temporary affliction is producing for us an eternal glory that far outweighs our troubles.”  Psalm 56:8, 2 Cor. 4:17

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Gluten and Eczema

Awhile back I started my three kids on a gluten free diet.  For two main reasons- my 23 and Me test showed that my celiac disease is definitely genetic.  Plus, two of my kids struggle with A.D.D. issues and the other has horrible eczema/TSW.  There is a very strong link between gluten sensitivity and both conditions.

There was a lot of complaining for sure!  Especially my eldest, who said he’d rather deal with potential effects of eating gluten than cut out his favorite foods.  He’s slowly coming around.  He’s big on science and I took time to explain how gluten causes inflammation in virtually everyone, but that some people are genetically more susceptible.  Because celiac runs in our family, that would definitely include him.  Plus the gluten free offerings have gotten so much better and varied in the last few years.  When I first went gluten free the gluten free pasta was disgusting.  Now there are brands so good you can hardly tell or miss the gluten!

I definitely got part of my answer when I let my kids “cheat” about 10 days ago.  My middle son, Gabe, had a huge piece of pizza and some regular cookies.  The next day almost his entire body was covered in a rash that lasted for four days.

I’ve noticed my oldest is much more calmer and focused.  Now if I could just find a way to treat surly-teenager-itis!!

I think my youngest is having less meltdowns.  I say I “think” because it’s really hard to measure objectively.  I did notice on Easter, after eating way more sugar than usual, she was crying and emotional all night long.  *sigh*  What you feed your kids really does have a huge impact on emotional and mental (as well as physical, of course) well-being.

Another thing I realized is that when I switched my son’s laundry detergent it lead to a huge backslide in his healing.  I didn’t even think much of it at the time.  He was getting so much better so when his natural powdered detergent ran out, I just ran out and got some standard free and clear detergent.  He’s been getting worse ever since.  I bought some more of his old detergent and washed all his clothes and bedding.  Hopefully that will help! MSGR_PHOTO_FOR_UPLOAD_1522792350087.jpg_1522792352001

When you’re battling eczema it’s almost always a sign that your immune system is malfunctioning.  It’s not uncommon for you to have random allergic reactions.  A couple days ago I had taken Gabe and his friend to a movie.  We were all having a lot of fun but she playfully rubbed a stuffed bear toy she had gotten from a claw machine on his face.  On the way home his eyes started swelling up.  They turned bright red and rash-ey.  Much Benadryl and a bath later and he was still miserable.  The bear was probably “cheap, china junk” and covered in flame retardants, dust, and formaldehyde.

With eczema it’s not just a skin disorder.  It’s internal before it is ever external.  It’s so important to look after your gut health and avoid inflammatory foods that would make leaky gut worse.  Vitamin D is probably the best single thing to treat eczema and any auto-immune condition.  We take a form that also has vitamin K2 to improve absorbability.  We also use Now brand vitamin D cream on Gabe.  It doesn’t irritate his skin and it helps keeps his levels up.

Fish is also great too.  Because our guy is so little he reacts quickly to food and treatments.  For instance, yesterday he was “crashing” (getting itchy all over and tired) when I gave him some fish oil and he ate some baked tilapia.  He perked right up and had a few more good hours in the day (as opposed to spending the rest of the day immobile).  Our western diets are way too high in inflammatory omega 6 fatty acids.  Think cheap vegetables oils.  We need some omega 6, but it needs to be balanced with omega 3s to keep our inflammatory responses healthy and appropriate.  The standard American diet has 16 times more omega 6’s than omega 3’s.  Omega 6 and Inflammation

To combat his you should throw out all your vegetable oils.  Corn, soy, peanut, canola, rapeseed….it’s all terrible.  Cook with butter, coconut oil, and at low temps with olive oil.  Try to eat fish at least once a week- especially wild-caught salmon, which is great because it is very high in inflammation-crushing omega 3s and it gets it’s pink color from astaxanthin- a potent antioxidant.

Of course fruits and veggies are so important too.  We try to buy organic in bulk, at least for the most heavily sprayed produce.

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to the veggies!

 

Just making these changes, and taking our son off of all steroids, eliminated his asthma/chronic pneumonia.  He still has a way to go but we aren’t going to quit until he is 100% healed!

 

 

A Year

The one year anniversary of my son starting topical steroid withdrawal passed pretty quietly ten days ago.  I wanted to write a triumphant blog commemorating the occasion but I didn’t have it in me.

Some of the memories and feelings are still raw.  Today I unfollowed my ITSAN support group.  The daily barrage of suffering is too much.  Our experience has gotten considerably better but the memories of the months of unmitigated suffering are still fresh and the daily reminders aren’t something I want to deal with.

Life is moving on.  Gabe is back in school and mostly functioning like a “normal” kid.  He is currently in the process of testing for the districts highly gifted program.  I could stress out about how little sleep he got last night and how it will affect his testing today, but I know it’s in God’s very capable hands.

One thing I pray is that God would give Gabe a double recompense of blessing for the horrible trials he’s had to endure.  I pray that Gabe would grow up in the presence of God and fulfill everything God created him to be and do.

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My Sweet Boy

The awesome thing about serving God is that HE can take the horrible things you have to go through and turn it around and make it work out not only for your good but for the good of everyone watching your story unfold.

“He brought me up out of the pit of destruction, out of the miry clay, And He set my feet upon a rock…Many will see and fear the LORD and put their trust in him.”  Psalm 40:2-3 

The Devil does his damndest to destroy us and thwart the plan of God for our lives.  But God uses those things and it’s those things that actually prepare us to step into our calling.  Devil be damned.

“You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” Genesis 50:20 

Through all of this I have been boldly bringing my prayers and requests before the throne of grace.  But one verse I have been meditating on lately is this stark warning from Psalm 106- “And he gave them their request; but sent leanness into their soul.”

It’s ok to ask.  We all want breakthroughs.  I want my baby healed.  I want to be a published author.  I want certain loved ones filled with the Holy Spirit.  But I don’t want those things at the expense of my spiritual hunger for God.  Sometimes we demand to get our way, and do get it.  But the end result is a leanness in our soul.  How terrible.

“Lord, help us to always seek your face and not just your hand.  Help us to be ever aware that there is nothing that compares to the riches of knowing and being known by you.  Help us to pursue you more than we pursue anything else, even the good things and hopes you have placed in our hearts.  We love you and trust your plan, even when it includes suffering. Amen” 

 

Change

If you’ve read my blog over this past year you’ll know my son, Gabriel, went through a really awful withdrawal from topical steroids.  It was so bed he was basically on bedrest for months.  Basically he had gotten addicted to very strong steroids and it made “eczema” spread all over his body and affected his entire system.  I really don’t want to post pictures but google “topical steroid withdrawal” and you’ll get this gist of how horrific and debilitating this condition is.

But now 11 months in and he is so much better.  

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My Little Goof

He’s not 100% yet but he’s come leaps and bounds from where he was.  So much so that we got a call from his school principal saying “Gabe’s looking great!  So… we really want him back in full school days.”  I told her it’d be a rough adjustment but we’d try.

Yesterday morning when I woke him up early it was so tough.  Because his adrenal glands were so messed up from the steroid usage, he has struggled horribly with insomnia.  We’ve (up till now) let him sleep in because he sleeps so poorly at night and for whatever reason slept better during morning hours.

But he has been making major strides so my husband and I agreed it might actually be helpful to try to force his body back into a more regular sleep schedule.  The first morning was rough but he actually did sleep a lot better last night and woke up much easier this morning.

It’s a huge step for him and milestone.  He still has a ways to go before he is 100% healed but we are so thankful for the progress he has made. 11825

A lot of times in life the path to healing is bumpy and hard.  There are times we need to push out of our comfort zones to reach the next level.  Change is hard but often necessary.

As Gabe’s loving parents there have been times where we comforted him and carried him (ha literally) but on this journey we’ve increasingly pushed him out of his comfort zone.  As he’s gotten better we’ve adjusted his treatment accordingly.  As he grew wings we’ve metaphorically pushed him out of the nest.  Times where we knew he was capable but it was his mind that was stuck.

How many of us are perfectly capable of making necessary changes but are still stuck in old patterns?  We were too sick at one point but we’re stronger now but still being held back purely in our minds? 

“Dear Jesus, you know our hurts, our pasts, our fears.  I pray that for all of us that you’d help us to break free from restrictive and sickly thought patterns.  Help us to embrace wholeness in every area.  Help us to find our wings and courage and fresh hope and get out of our comfort zones.  For your glory.  Amen.” 

Face like Flint

I just got kicked out of an eczema support group on Facebook.

I was acting as sort of an awareness raising vigilante for the dangers and prevalence of topical steroid addiction amongst those who suffer with eczema.

Like, “LOOK!  Guys I have the answer.  You can get completely better!!  Your steroids have been causing your worsening condition all along.  Now you just need to go through this hellish withdrawal!!”

Obviously I wasn’t met with much enthusiasm.  The people who administrate the group are familiar with TSW and for whatever reason, have decided against it.  Not only that, but because of the suffering associated with it, they label it as “dangerous” and “misguided” and the people, like myself, who try to sound the alarm, are promptly booted from the group.

My reasons for wanting to warn people is simply that I wish someone had warned us before our level of dependence on steroids got as bad as it did.  We could have avoided so much pain and suffering for our son.

But the road is a hard one, no doubt.  And many try for a time, before going back to steroids and concluding that TSW doesn’t work.

I’ve gotten some unexpected feedback sharing my blog within my TSW support group.  People commending my husband and I for doing a good job.  It is great, in a sense, mostly because it’s vindication.  When we entered into this, it was going against medical advice.  It was going it alone.  It was entering into some pretty bleak and abject suffering.  We felt very defensive about our decision because while we knew we were doing the right thing, we felt a lot of heat over it.

But at this point it is finally paying off.  My son is getting better.  There is a spark of vitality and health that strengthens every single day.

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He was thrilled to get a McChicken before school~

In our case we found the answer to our prayers, to our searching, but it meant pressing through a whole lot of pain and difficulty.  “As the time approached for him to be taken up to heaven, Jesus resolutely set out for Jerusalem.” Luke 9:51  Another version says, “He set his face like flint.”  Jesus knew full well what he was getting into and he pressed into it.  He was resolute.  Because he knew the joy set before him.  He knew the end game.

 

My husband and I never wavered, not once.  We knew that God had led us to this point.  We knew Gabe had to go through this withdrawal.  We were of one mind, and there is so much power in that.  Gabe, young as he is, he understood and was 100% on board too.

We’ve gone through a pretty extreme trial, but, we all go through stuff.  We all deal with pain.  That’s why we need hope.  We need to know the end game.  We need to know our Shepherd.

Often, the only way out is through.  We have to be resolute.

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off every encumbrance and the sin that so easily entangles, and let us run with endurance the race set out for us.

Let us fix our eyes on Jesus, the pioneer and perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.” Hebrews 12:2-3

I know there are those who don’t get their healing.  At least, not here on this earth.  But we know the end game.  We know in whom we have believed.  We know this life isn’t the “be all, end all”.  It’s like a cosmic waiting room we bide our time in until we can get to the real deal.  And hardships help to wake us up to the eternal consequences and weightiness of how we live our lives here while we wait for the children of God to be revealed.” Romans 8:19

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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When You’re Going Through Hell…

…you just keep going.

It’s a bit of the unofficial motto of TSW, or Topical Steroid Withdrawal.

In the ITSAN facebook group I belong to, I frequently see people post things like, “I can’t do this anymore.”  or posts from people who have just started the process of withdrawal and they are terrified of how bad things are going to get.

It’s like waking up and discovering that you’re up to your neck in quicksand.  You either give up or begin the long and painful process of clawing your way out.

Yesterday I was thinking about the visits we had to Gabe’s dermatologist.  At first he had responded very quickly to the super potent creams.  But on follow up visits his eczema had returned and was spreading.  I remember the almost shrill tone of her voice as she told us we needed to use more cream.  We needed to apply it twice a day.  We needed to seal it in with wet wraps.  We needed to follow her instructions exactly and we weren’t and that’s why he wasn’t getting any better.

Of course now I know that those cursed creams were killing him.  His skin was the tip of the iceberg.  I am so glad we never used as much cream as she wanted us too.  I’m so glad we used the protopic (an immuno-suppressant cream) only a few times.

His health was getting worse and worse.  The steroids weren’t working anymore.  He had a weird red rash on his torso that wouldn’t go away.

My husband discovered TSW reading an eczema blog.  Everything definitely clicked.  We had answers but now we had to weather the hellish withdrawl.  We had to claw our way out of this quicksand that we had stumbled into.

Eight months later and the redness has faded.  But right now he deals with nerve pain where the nerves are healing and regenerating.

His legs aren’t a mottled purple anymore but he still oozes plasma out of too thin skin.  He still wakes up in a pile of his own dead skin every morning.

He is still very dependent on us for much of his care.

I don’t know why I am writing this other than I just need to get his story out there.  The medical establishment almost killed him.

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His entire body went through this extreme and painful withdrawal.  Thankfully, it didn’t hit all at once.  This was the first month when it started on his neck and torso.

 

I implore people, please do you own research.  Don’t blindly trust someone because they have a stethoscope around their neck.  Investigate the ingredients of anything you allow to be put on or in your body. gabebabe

It’s been a long fight, an all out bloody crawl, back to health.  But this is my beautiful boy today… healing naturally with the help of supplement and lots of TLC.

He still has a long way to go but we’re thankful for the progress we’ve made and all we’ve learned along the way.