Topical Steroid Withdrawal (nightmare)

If I could cry a thousand tears for everything Gabe has gone through, it wouldn’t be enough.

It’s been such a tough week.  Shiloh has had the flu and I came down with it a couple nights ago.  I am sick and miserable and trying to deal with what can only be described as topical steroid withdrawal hell with Gabe.

We know now that Gabe has been going through withdrawals for months.  He’s had topical steroids for years.  We’ve always used as sparingly as possible.  But last Fall he went through a health crisis.  He had pneumonia we couldn’t get rid of, even after two rounds of antibiotics.  So his primary doctor prescribed an oral steroid, prednisone.

Now we can look back and trace this red rash and bumps to that time.  The rash would come and go and we had no idea why.  I stopped using laundry detergent in his clothes.  We took him off gluten.

We took him up for prayer at church last Sunday, which happened to coincide with Tim applying some powerful steroids to some trouble area’s on his skin.  The red rash seemingly miraculously disappeared.  We thought it was the start of a healing.

At the point we decided to quit steroids in an act of faith, as Gabe did look a lot better.  Within a couple days the red rash was coming back.  Tim just happened to find some information on TSW (topical steroid withdrawal) Friday night.  He was certain that he found the answer for the rash.  I heartily agreed.

The next day, Saturday, after a week off of steroids; Gabe exploded in a red rash.  His skin started oozing, he had chills, he was exhausted…he was going through a violent withdrawal process.  One that was only just winding up.

Today he looked even worse.  His entire genital area was very swollen and painful (which we realized was due to swollen lymph nodes, another symptom).  He has literally every single symptom of Red Skin Syndrome, otherwise known as Topical Steroid Withdrawal.

We made an emergency appointment to get him seen at the U of M Masonic Children’s hospital in Minneapolis to be seen by a pediatric dermatologist.  I wasn’t very hopeful that they would be willing to help, or even acknowledge, his condition.  Tim wanted to give it a try though, and see if there was anything they could do to help.

I was right.  The doctor, a very young woman named Christina Boull, strode into the room with an air of arrogance.  She denied that Gabe had RSS.  She looked at us accusingly and said that he was having a severe eczema flare and needed to be hospitalized and be administered steroids immediately.  We tried to explain how he his eczema had been fine, very much under control (and still is) just a week prior.  And that since we had stopped putting steroids on him he had exhibited symptoms of extreme withdrawal- the chills, swollen lymph nodes, exhaustion and the bright red, oozing rash.

She was adamant that the red rash was simply poorly controlled eczema.  That she could get it under control with more steroids.

I wish we has gone in there with more information.  Like this article, begrudgingly acknowledging the existence of this very real condition https://nationaleczema.org/education-announcement-topical-corticosteroids-eczema/ or this article by a dermatologist who has helped thousands of patients through TSW http://dermatologytimes.modernmedicine.com/dermatology-times/news/modernmedicine/modern-medicine-news/topical-corticosteroid-addiction-may-be-b?page=full

We are so angry because we have been treating this withdrawal for months, not knowing that we were worsening the addiction.  We are angry because though TSW has been well documented, we were never warned.  All our doctor told us was that the steroids could cause skin thinning (which would actually be helpful in his case, according to her).  We were completely unaware of the horrible withdrawals that would leave Gabe in far worse condition than any actual eczema he dealt with.

We are angry because we feel like we are on our own dealing with this.  The doctors that helped get him into this mess are now pointing the finger at us.

We are angry because this is just the beginning.  Coming off of steroids takes months or even years to overcome.

We are angry cause our boy is in so much pain.

 

At this point, we are committed to helping him detox as safely as possible.  We will find doctors willing to work with that objective.  We will possibly have to pull him out of school, as this process can take months.  We will keep him as comfortable as possible while he heals.  We will pray that God would expedite the healing process.

The Next Step

It’s been a really crazy week.

Last Sunday we brought Gabe up for prayer in church.  When I got home from work that night Tim (my husband) was in shock that Gabe looked dramatically better. 20170213_151128 20170213_195956

Gabe has had eczema since he was three, so for 5 years we have been dealing with this.  We have been using topical steroids for years to manage his eczema, because we felt we had no other options.  While all along, his eczema continued to spread and get worse.

So After church when Gabe showed dramatic signs of healing we stopped using all his steroid creams.

In the next couple days the redness came back.  We were really discouraged, like; did God heal him or not?  What’s going on?

Friday night Tim just happened to stumble on some information about topical steroid withdrawal, or red skin syndrome (RSS) on this website http://itsan.org/ .

It was a God send because the next day (yesterday) Gabe’s skin exploded in an angry red, inflamed rash.  By nightfall his skin was oozing and he had chills. 20170218_111443

29562958This second set of pictures were taken just 4 days after the first ones.

This is not eczema.  This is topical steroid withdrawal, or red skin syndrome.  Gabe has a difficult recovery process ahead of him.  We do have a light at the end of the tunnel though.  This is shockingly common.  Many others have gone through this.

We want to share our story to raise awareness.  We anticipate that after going through withdrawals, Gabe will have a normal and happy life.

I will update as we see progress.

Thanks everyone for you prayers and concern.

For the Joy

I realize I’ve blogged a lootttt on the topic of suffering.  I write from where I’m at.  I write what is on my heart and what God speaks to me.  I write because I feel called to (and heck, I like it) and to hopefully encourage people.  I’ve written a lot on hardship and I feel like it’s a good thing because people can relate.  I certainly don’t think we should (or need to) minimize our pain.

Suffering is an undeniable part of life.  If you are walking this Earth with feet of clay you are going to have to contend with pain and difficult trials.

But I believe that suffering has an expiration date.  We are not here to suffer.  We are here to enjoy intimacy with our God and live in victory and freedom.

“For if, by the trespass of the one man, death reigned through that one man, how much more will those who receive God’s abundant provision of grace and of the gift of righteousness reign in life through the one man, Jesus Christ!” Romans 5:17

Suffering is always a means to an end.  The end being that God is glorified.

As I was getting ready for church yesterday I was thinking about the story of Lazarus.  Lazarus was a very close friend of Jesus.  Lazarus had two sisters that were very close with Jesus as well; Martha and Mary (who have their own story, but for another time).

Lazarus had gotten very sick.  A messenger ran to get Jesus.  Jesus waited 2 whole days before leaving to come see Lazarus, the text says he waited until he knew that Lazarus had died.

Martha and Mary are understandably upset.  When Jesus does show up, Martha runs out to meet him.  “Lord, if you had been here, he wouldn’t have died!”

Jesus looks deep into her eyes and makes this powerful statement, “I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?”

They were just hoping that Jesus would heal him.  Jesus had different plans.  He went to the grave, where he had been buried 4 days prior.  He comforts Mary and Martha and even weeps with them.  He knows our pain, because it’s his pain.

“Roll the stone away.”

“But Lord, there will be an awful smell…”

“Did I not tell you that if you believe, you will see the glory of God?”

So they roll the stone away and Lazarus is raised from the grave.

I got to church and what was the pastor preaching on?  The story of Lazarus and how it relates to us.  It was a God-thing.  We brought our son up to have him prayed for after the service.  This morning he looked a good 50% better with most of the redness and swelling gone and months-old wounds showing signs of dramatic improvement.  We know he got a special touch from God and we are believing that he will receive complete healing.

We serve an awesome God.  rays-of-light-shining-throug-dark-c

There is a powerful message in this story.  We may suffer, yes.  But we know that at some point Jesus is going to come into our situation and command some stones to be rolled away.  When Jesus shows up, he brings life with him.  He is our healer.  He is 100% good.  He is 100% for us.

Ultimately, for us who believe, we will be completely healed.  We don’t know the time table, but we know the one who does.  Jesus triumphed completely over death and the grave.  One day, death will be swallowed up.

In life we will always have an element of suffering.  We live in a fallen World.  I have my own share of suffering, as do you.  But I also have so much joy.

For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.” Hebrews 12:2

“And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.” 1 Peter 5:10

Suffering doesn’t get the final say.

 

Of Hope and Heroes

My thoughts for today are on the importance of hope.

I’ve blogged frequently about my son, Gabriel, and his eczema.  I actually don’t talk about it much in life, for whatever reason.  There just doesn’t seem to be a point. I think a lot of people were unaware of how serious he was until it spread up his neck.  His eyes have read rings around them and from his jaw down, he is almost completely covered in red, angry skin with areas of swelling and infected wounds and abscesses.

It’s really bad.

There is no “but”.  It just sucks.  It’s horrible.

He usually handles it so well.  Most mornings he wakes up tired and in pain and doesn’t want to go to school.  But he does so well.  I just got his report card and he is meeting or exceeding expectations in every area, in spite of his frequent exhaustion and pain.

Today everything came to a head.  He came home emotional and angry.  He was crying and screaming and kicking his closet doors.  I had to force my way into his room and I had the sense to just let him be angry.  To just be there with him.  I sat with him until he let me hold him.  I just held him until he was ok again.

I sit here with tears streaming down my face.  This is so hard.

I’ve said before there have been times where this thing brought me to the edge of myself in every way.  Times where I refused to pray anymore.  Times when I could only look at and treat his naked body with a glass or two of wine in my system.

It’s been brutal.

But I have been praying and seeking and finding God again.  He reminded me of a story, a testimony I heard many years ago.  It was a ‘strong man’ who came to the church we were attending.  His thing was feats of strength- rolling up frying pans and breaking wooden baseball bats.  He did his feats and then shared his story.  Growing up he had been chubby, asthmatic, and completely immobilized by anxiety.  The most impressive thing about this man was how unbelievably tender his heart was and how incredibly he was advancing God’s Kingdom.

I think of his story often and it gives me hope. 

Awhile ago I was talking with Gabe and the subject of the movie “Terminator” came up.  I outlined the plot and he wanted to know why the robot wanted to kill Sarah Connor.  “Well, I said he knew she was going to raise a hero.”  As I said those words I was overcome with emotion.  I saw Gabe as a future hero, that that’s why his life has been under so much attack.  I refuse to let the enemy have him.

I am going to raise a hero.

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18

My Power Source

I haven’t written in a while.  Summer is always a busy and chaotic around here!

I also switched jobs.  Now I work part time as a barista at a Target Starbucks.  Honestly, the job I’ve wanted for a long time.  I love Target and I love Starbucks!  I also love getting a discount, yay!  13626415_10154249884502429_8547029261097152568_nMy friend snapped this on my first day.

My husband’s brother and his family visited for the first time from Virginia a little over a week ago.  It was incredibly special.  We had a blast, hanging out and doing tourist-ey things with them.

Tomorrow is a big milestone for me.  I’ll be turning 30.  I’m kind of sad to leave my 20’s behind, but older = wiser, right?

I watched the movie ‘Miracles from Heaven’ a few nights ago.  At about 20 minutes in I started crying and couldn’t stop.  It just touched so many nerves for me.  The child in pain, the mom losing hope- it’s definitely been where I’ve been at for a long time.

My 7 year old son, Gabriel, has had severe eczema for years now.  It has been so tough for him.  Lately we haven’t been letting him play outside because he reacts so strongly to the allergens.  His eyes are always bright red lately.  There’s times where he can’t sleep because the itching or pain is so intense.  And all of this with daily anti-histamines and steroids and expensive lotions.  It feels like a never ending nightmare.

Watching him suffer, day after day, had really hardened my heart towards God.  Gabe had asked me, “why did God let me get eczema?” and I’m at a loss for words.

No, it isn’t as serious as what the Mother was facing in the Miracles movie.  But his condition has been devastating for him.  To the point that when we went to meet his cousins (in 90 degree heat) he cried because he wanted to wear a sweatshirt to cover up all the redness, bumps, and open sores.  He is also limited in his daily ability to just be a kid because the itching and allergies make him so miserable.

We’re still going through it.  There’s no end in site.

I think most (if not all) Christians face a make or break trial.  Something devastatingly hard, something that never seems to end, something that hits home.  Those times test what we know to be true.

God was speaking to me through that movie.  I realized I’ve been ‘under’ the trial and the devil was running roughshod through my life.  In my pain and sadness I was distancing myself from God, my power source, and leaving myself very weak and vulnerable to attacks from the enemy.

“Now if we are children, we are heirs- heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.” Romans 8:17

I have resolved to hold tighter onto Christ through this.  I believe in miracles.  Especially the quiet ones, where God uses tough circumstances to do an incredible work in us.

My sweet boy, with his Daddy….

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Dark Tunnel

Today I’ve been thinking about brokenness in life and finding glimpses of light in dark spaces.  Cheery, no?

Life is heavy.  Life is hard.  Sometimes it all, plus the unrelenting pull away from God can all be too much.

I have a child with aspergers, high-functioning autism.  It’s never easy but sometimes it is just so hard.

Another child has eczema an it is a daily struggle to keep it under control.

I have my own health issues- which means I am on a very restricted diet or  I feel awful.

I tend to get sad and withdrawn because of the weight of it all.  So often we bear our burdens alone.  No one can totally understand what we go through.  Or we get platitudes or the dreaded unsolicited advice.

Plus the pressure we feel to act like everything is ‘ok’ when it isn’t.  Suffering is just part of life.  I wish we could just let things be what they are without trying to put a positive spin on it.

But if we are real we risk being judged or having our pain minimized.  Like Job.  We are uncomfortable with suffering so we try to come up with a quick fix, an answer, a reason…when sometimes things are just broken.  Sometimes prayers just go unanswered.

If we can’t be real in our brokenness and honest is our faith even real?  Jesus was the ‘man of sorrows’.  He understands even when no one else does.

“Truly I tell you, at the renewal of all things, when the Son of Man sits on his glorious throne…” Matthew 19:28

I’ve been thinking about that a lot- that there is going to be a great renewal of all things.

Every burden lifted.  Every tear gently wiped away.  Every last broken thing gloriously made right.

In the mean time I pray that my own pain and brokenness makes me a more compassionate, merciful, caring person.

No one has it all together.  We all have private hurts, pain, and burdens.  We all need mercy.  I think pain can be like the surgeon’s knife- cutting out the pride and arrogance and leaving something a little messier and tender and Christ-like in it’s place.

“Lord, all you asked us to do was to believe and follow you.  Help us to do that in spite, or even because of, our circumstances.  Help us to love.  Help us to be beacons of grace in a harsh world.  Help us to be strong until you come to set all things right and make all things new.”

 

 

Growing Pangs

I feel like that best describes where I’ve been at spiritually and emotionally.  I want so much to be real and transparent in my life.  I want to reject the vestiges of religion that keeps me wearing a mask and living in fear.  What does Christianity mean to me?  What does Jesus mean to me?  I guess I want to feel to really be me and authentic and not even remotely perfect but someone who has a real, living faith in the One who is perfect.

I feel like so often Christians feel like they have to represent the faith well.  They have to act like everything is ok.  That they know all the answers.  I feel like we really miss the point.  God doesn’t ask us to perform, but to be. 

I guess I am still trying to find my own voice, my own balance between the grace and love and discipline and chastising.  Like you know what?  I love Jesus and he is real but my kid got into a fight this week.  I have faith but I am still waiting on some answers to prayer.  I go to church but I also enjoy wine and laughing my head off at a semi-inappropriate joke.

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that face says it all!

I’ve never had so much on my plate.  Michael, my oldest, has been acting out something terrible this year.  😦  He is very bright and they put him in a tougher program for gifted kids.  But he is really not doing well and acting very disrespectfully and angry towards staff and other kids.  In a lot of ways we just don’t know what to do.  I do know that God does miracles and life-change is his specialty.  Michael does have faith in God and I’m hoping and praying that God is going to do some transforming work in Michael’s heart.

Gabe is doing so much better.  We saw a pediatric dermatologist last week for his eczema and she got him on a new steroid cream to get the raging infection under control.  We are also doing bleach baths, wpid-20151006_164607.jpgVaseline all over his body, and wet wraps over night.  He has gotten like 60-70% better in just 5 days.  He is really happy and much less miserable.  So that is a huge relief!  We are praying that the skin stays healed when we stop using the steroids.

And my youngest, Shiloh, is such a delight to me.  She is just so happy and full of life.  She is my constant companion, my little buddy.  She definitely keeps me busy! wpid-20151006_113856.jpg

Meanwhile I am waiting to hear back about a possible auto-immune issue.  I am really just taking it easy, not doing killer workouts for now.  I think I can control about 80% of how I feel with diet.  So I am just thankful that I can do that, even if it means a very limited diet.

In my early 20’s I had tons of time to devote to reading the Bible, worship, and prayer.  Now I just don’t.  I stuggle with feeling really guilty about that.  But I am growing in finding God in my very imperfect circumstances and with my ever-imperfect self.  Still figuring it out.  Still hanging in there.  Still catching glimpses of God’s glory peaking through.