No more steroids!!

Sunday, September 1, 2013

We left the hospital with Isaiah on a Tuesday.

That night was awful and itchy.. 

To try and help the itch, we used the Cortisone 10 once through the night..

This was the only picture I took of him that week because the suffering that started made the last 2 months look like a piece of cake.

Within 48 hours of leaving the hospital, he began pouring fluid from every pore in his body. It looked like someone sprayed him with a water hose. The fluid was dripping off of his ears and running down into his eyes. It was sticky and everywhere.

He SCREAMED for the next two days - STRAIGHT - I can not even begin to put into words our feelings and our thought process during that time. My husband was working nights and it got beyond the point of me coping - I called him and he rushed home that Thursday night. We had no idea what to do or how to give Isaiah any relief.

I prayed to God to just take us all that night.

Life was not worth living for any of us, especially Isaiah. I just wanted him to be at peace and pain free. I could not take the torture anymore. I began to feel surreal, like my mind was beginning to crack under the pressure. I was wailing and crying out to the Lord, begging Him for an answer.

The next day was a Friday and we were in the pediatrician's office first thing that morning.

Before we left the house I remember holding Isaiah in front of the mirror and just weeping.. wailing.. I told God that I trusted Him for the answer but I needed it and I needed it now.. I told the Lord I could not take the unknown for another day or another sleepless, hellish night. I told Him I did not want to give up but I was on the tip of that bridge, fixing to plummet.

My mind and body were at my breaking point, and I knew it. 

I felt like I could not breathe and there was something huge sitting on my chest. 

I began to hyperventilate.

I walked back in our living room and my husband was sitting on the couch in tears. He had heard every anguished word I had spoken in that mirror. 

He had never seen or heard me at that point.. 

He had never been at that point, himself..

I had not slept in days and I honestly don't even know how I was functioning because I did not even remember the last time I had eaten.

Again, there are just no words to describe those days and nights..

When our Doctor walked in, he could not believe his eyes.
He was physically speechless for minutes..

When he opened his mouth, he said "Never in my 30 years of practice have I ever seen anything like this.."

None of us knew where to even begin, much less what to do..

I just held Isaiah's wet blistered body and cried.. 
I did not even have words to say anymore and could not say anything to those in the room.

They did a CMP and his albumin and levels were so skewed.. We went home, thinking back, I don't know how.. I guess our Doctor was in shock honestly.. The hospital stay obviously did not help and I don't think he even knew the next step to take. He told us to do everything we could to get him eating to get his blood protein up and our doctor's visits were going to start every few days or until there was an emergency.

We went home to put him straight in the tub in the sink..

That night we continued to cry out to God and my husband stumbled across this site after he typed in "steroid side effects" .. then, something clicked in my mind.. I picked up my phone and honestly I don't even remember exactly what words I typed in the search bar but I think it was "steroid cream side effects".. I came across this website/blog:

While I was digging, my husband stumbled across another site, of a man whose skin looked identical to Isaiah's. He was reading out loud about this man in "Topical Steroid Withdrawal" and how he had to move in with his fiance's parents for 8 months just so they could take care of him as he was in this withdrawal...

As I was looking through the pictures on the "Red Skin Syndrome" site, my mouth dropped open.

The topical steroids were causing all of this??
This "full body severe eczema"??

There were picture after picture of children and adults that looked just like our son. 

I had NEVER seen ANYONE who looked like him.

I sat in shock.

The steroids that the ER doctors and nurses, allergists, as well as the hospital allergist and doctors stated would be the only way our son could function and eventually clear..



I read all about the author of the blog, a sweet lady named Joey, who had used steroids for more than 20 years and she stumbled across another woman's story after she began the online search when the "eczema" that she had all of her life became totally out of control.

I found out about the non-profit organization ITSAN - the International Topical Steroid Addiction Network - and a Doctor from Beverly Hills - Doctor Rapaport, who said a lot of things that rang true with us - I watched a few videos of him speaking and was mind blown. 


To sum it up, he said 
"Stop the steroids cold turkey.. brace yourself for hell on earth and with time, YOU WILL HEAL!" 

Everything made sense after reading and listening to those precious people. Those people who had suffered or were suffering, just as we were..

Those children soaking in baths, crying out in anguish, just like our Isaiah.

And all the crazy symptoms matched.. 
the redness from head to toe, the ooze, the odd smell, the itching, flaking and the flares..

Our son was in a continuous cycle of topical steroid withdrawal and we did not even know it. We would apply the cream and the vicious cycle continued, worsening each time.

Here are pictures of others going through TSW/RSS:

"Severe full bodied eczema"


Is there even such a thing?
At this point, I do not believe so..

A topical steroid induced eczema..?

yes, absolutely..

We now feel that our son was misdiagnosed by the first allergist we saw.. At this point, I do not know what caused that original blister on his cheek, but I do know that the hell on earth experience in our home over the last 5 months is not typical "eczema"..

As I stated in the last blog, I am allergic to penicillin. 
When I go to the doctor, I am asked, "Are you allergic to any medicines..?"

"Yes, penicillin.."

No crazy looks, no unbelief, no questions asked and 


Why are steroids looked at differently? 

Just because the mass of population tolerates them well, with no crazy, tortuous side effects does not mean that there is not a group of people that can not.. 

our sweet, infant son for one.
We would soon find out that the MAJORITY of doctors, dermatologists and allergists think it is IMPOSSIBLE for steroids to have an adverse effect on people, 
and they especially do not believe the symptoms our son had in and on his body were caused from the medications..

? Why is that ?
Topical Steroid Withdrawal is a REAL iatrogenic disease 
We would also find out in two more extended hospital stays and even conversations with many around us that people thought we were ludicrous. We also read on blog after blog where those suffering from TSW/Red Skin Syndrome were looked at the same way by most in the medical field and those doctors were trying to shove steroids straight down their throats - a very real issue, worldwide. 
There are even FDA studies and published articles that describe this, but still, most doctors are turning their heads and continuing to push the scripts.

At that point though, on that Friday night, God Almighty answered my gutted prayer from earlier that morning:
through an angel and fellow sufferer named Joey, a man named Jake and an organization of people who would soon seem closer than family in so many ways and would help carry us on into that healing. 

There was HOPE.

And FINALLY, in an almost instant, the weight was coming off of my chest and I could begin to breathe again.

The suffering was not over.. no where near,
but there was light at the end of the tunnel..

and my LORD kept His word when He said,
"I will never leave you or forsake you.."

I immediately sent a text to our ped's nurse (an angel to us!) - as she and I text almost weekly - and sent her links to the information we had found.

When we arrived at the doctor's office for our next visit a few days later, I took our Doctor info on ITSAN and some of the blogs we had found. He admitted he had never heard of anything like it but flipped his laptop open right in front of us and started digging. He was very open to the possibility, thank God, and like us, just wanted concrete answers. 

We stayed afloat through prayer, tears and the testimonies of those on the ITSAN site/group and the blogs of the Red Skin Warriors until our next hospital stay the week of July 4, because Isaiah continued to loose weight and his health continued to plummet.
He had not grown any teeth at all and his hair continued to fall out.

He was not sitting up on his own and would barely eat. 

His skin was screaming for the steroids but we would not bow.

We pressed forward, praying and believing the best.

Here are pictures from the next few weeks after we stopped all steroids on May 22, 2013..



Next blog post: 

July - Second Hospital Stay


Proudly designed by Mlekoshi playground