Mr. Itchy and Mr. Scratchy

 
My daughter now sings a song as she is helping me 
with our daily gauze wrap of Isaiah:

"Itchy Monster, you're not on me! 
Itchy Monster, you're not on me!!
Itchy Monster, you're not on meeeeeee!!!
Never, never, no, never ever! Not on meeee!!" 
:) 

Isaiah gets a big kick out of that and laughs right along with Sissy now that the itchy guy is on his way out!

******

There is a wonderful book that was just published called 
"Taming the Scratchy Monster" 
(where Sissy got the idea for her hit song!)

 

It's about a child named Billy who discovers the Monster causing his itchy pain and what it takes to cause him to retreat from his tormenting forever!

The book was written and illustrated for The International Topical Steroid Addiction Network - with 100% of the book's proceeds going to ITSAN, with the goal of helping more children like Isaiah and the others suffering across the globe.

itsan.org
forum.itsan.org
 

This quote is from Kristina Ventura who's daughter, Keira, just came through TSW and has been steroid free for 2 years:

"It is a book for parents and children going through topical steroid addiction/withdrawal and even adults/parents that may want to explain to their children/other family members what they, themselves are going through. We hope the book helps children better understand what their skin may go through and to know that their 'Scratchy Monster' will eventually leave them alone."

Click here for Kristina's blog on the Scratchy Monster book

 

The book is so well written and beautifully illustrated with the most vivid colors! It is truly a pleasure to read (especially the ending and fate of that scratchy monster!). 
Isaiah, as small as he is, looked at every single page with his sister when she read it to him.

 On a funny note, just this week we ordered Isaiah two packs of onesies to replace some of his that are Vaseline dingy and this one came with it:

Sissy said this little booger has got to be the Scratchy Monster's cousin "Itchy" and Isaiah will NOT be wearing him!



I definitely see the resemblance and agree!!
 
********

Kristina is such a beautiful person and I am so thankful to get to know her through this journey of TSW. She is so pro-active when it comes to Topical Steroid Withdrawal / Red Skin Syndrome because of the torment Keira experienced. She actually just raised some serious awareness when she took our story and pics as well as many others for a meeting with a leader in the national eczema arena. 
We are all so grateful to her for that! 
This is the only way to give this very serious side effect a voice, show those that are suffering with 'severe full body eczema' that most likely that is not the case (!!!) and demand labeling from the FDA.

When we were at Emory in Atlanta in late July, I read every single page on Kristina's blog. The Ventura's TSW story ending is a wonderful one of victory, but the beginning is heartbreaking, as was ours, and so many others who are in the withdrawal process.
(If you are new here, here is the link to the first blog page of our story:
http://isaiahquinn.blogspot.com/2013_08_01_archive.html)

This is an actual quote from Kristina's blog, as I can SO RELATE with our own journey with Isaiah when we were sinking in the unknown before finding out about TSW, as she was here:

"Out went anything that could possibly be an allergy trigger - said good-bye to our dog, changed bedding to organic chemical free bedding - cleaned house top to bottom with chemical free vinegar to remove mold, chemical residues, etc, dust mite proofed everything!, tried NAET, acupuncture, and allergy sub-lingual drops.  We even joked (though not really joking) about cutting down the neighbor's highly allergenic trees across the street.  We were desperate.  We did about everything but put our daughter in a plastic bubble, though that was tempting at times.  I started keeping food logs and dairies of where we went during the day - the weather, what we touched, what we looked at - I was becoming so paranoid of what was triggering my daughter's skin day to day and if that related in any way to a bad night or a good night - there was no pattern to the madness. In early 2011, we moved in with my parents desperate for support. We were sleep deprived, exhausted and no longer knew how to cope with our daughter's unbearable itching and long traumatic nights.  In the summer of 2011 we decided to leave Contra Costa County and the house we purchased the summer before, thinking it was the house and local pollens she was allergic to." 

I have to say, we did not leave our home, although I know exactly the thought process it took for this precious family to do that.
 
Below is another link to her blog on a page titled
"A Mother's Wish"
where she posted a poem she had written on the NEA's (National Eczema Association) FB page when their family was still drifting in the misery of the unknown before the same precious angel, Joey, that we found, found her.

(There are also pics of other children in the process of Topical Steroid Withdrawal on the same page that are mind blowing.)

Click here for "A Mother's Wish"

All that is written below in italics is from Kristina's blog and it describes her role, as well as the others that participated in this awesome project.
Please visit her blog as well as ITSAN.org and prayerfully consider donating to help those find hope! 
(and also, be able to get a wonderful children's book for a donation of $35 or more in the process!)

Keira Gives Back -- ITSAN's new book, 'Taming the Scratchy Monster' now available.

I am proud to say that my daughter, Keira is giving back to the organization that helped save her skin, ITSAN, helping create a book based on her little monster who once terrorized our family. The children's book, 'Taming the Scratchy Monster' book has been published and is now available to order through http://itsan.org/Children_s_Book.html 
A year in the making, it is a beautifully illustrated book for children and parents who are going through the topical steroid withdrawal process -- written by a dear friend of mine, fellow Red Skin warrior and brilliant author, Louise Jones.  Louise did a wonderful job of capturing the withdrawal journey in such an engaging story about a young boy and annoying monster--a story line that is perfect for kids (and adults) of all ages going through topical steroid withdrawal. I think anyone who is going through TSW can appreciate the story and nuisance of 'Scratchy Monster'.  My daughter, Keira and I came up with the concept of and character 'Scratchy Monster' during my daughter's painful withdrawal two years ago, a nuisance of a monster who once terrorized our family. 
Having both experienced topical steroid addiction and withdrawal, Louise and I teamed up to bring the 'Scratchy Monster' alive in a book that could help others who are still suffering.  I found a lovely illustrator in Spain who was willing to work with me on illustrating the scenes of Louise's storyline using Keira's Scratchy Monster character. The book came together from all the hard work and dedication from three different countries, so it is an international book just like ITSAN :)
Louise's skin is almost healed and my daughter, Keira fully healed last year from topical steroid addiction. She is now living life like a 5 -year-old should be, no longer a prisoner in her own skin. The story is based on Louise's and Keira's long and trying, and yet successful journey towards healing. In the story, the protagonist, Billy, endures many harsh conditions including a dry desert, an oozy swamp and a hot volcano in his efforts to escape the 'scratchy monster'. These conditions mirror the stages the skin may go through during the withdrawal process.
Steroid-induced eczema, also known as Red Skin Syndrome or topical steroid addiction, is a side effect of topical steroid creams -- a condition in which the body becomes dependent on topical steroid creams requiring stronger and stronger creams to obtain relief. The withdrawal process is a very painful one, but was necessary in order for my daughter to heal. http://itsan.org/eczema_questions_answered.html

ITSAN (International Topical Steroid Addiction Network) is giving the book away with a minimum donation of $35.00. 100% of the proceeds from this book goes to ITSAN.org to help children like Keira, and sufferers around the world. Louise and I wanted to give back to an organization that has changed our lives forever as well as help those who are still suffering from this painful condition.

Thank you Kelly Palace for starting an organization that is making a difference in the world; an organization that is saving so many people from this skin nightmare, illuminating what has been a very dark and lonely path -- Thank you for allowing Louise and I this opportunity. ITSAN is making a difference in so many people's lives around the world. 

And thank you Louise for your brilliant writing skills! You are a talented author and your wonderful story will help so many parents and children who are still suffering.  

Please share this post with family and friends who may want to help support this cause or would like to have a better understanding of topical steroid withdrawal. Feel free to share this post on your blogs, forums, and other websites you come across to help get the word out and help raise awareness about topical steroid addiction.

Please go to Itsan.org under the tab,'children's book' and donate today to get a copy of the book.

With much love and admiration to all of you still battling the 'Scratchy Monster', never give up or lose faith that one day you will (as my daughter likes to say) 'kick Scratchy Monster in the booty' for good as my daughter did.

 
Keira holding the very first copy
of the book hot off the presses!

  Louise Jones, Author of 'Taming the Scratchy Monster', holding her first copy of the book!

For more on Louise Jones' story of withdrawal, please go to Louise's blog: http://topicalsteroidwithdrawal.blogspot.com/

Next blog post: Healing is Happening

Off to Emory Atlanta..

When we got home from the hospital stay the first week of July, Isaiah developed a fever our first night at home.

He received a half bag of albumin right as we were leaving the hospital that Saturday.. would have been a full bag, but they lost the vein in his head. Rather than he being stuck again, when they were planning to release us anyway later that day, our ped said that a half bag would suffice. He had already received 3 others during that same stay.

The fever crept up to 102 by Sunday morning but into the am hours of Monday, had climbed up to 104.2. His little body was burning up that night and I was extremely worried. 

Here we were again, had just left the hospital, showing up at the ped's office straight after. 

During the night with the fever, he developed this pimply rash on his chest and back.. started on his shoulders but within 3 days it covered him and he itched like he had never itched up to this point. His skin was super red again.

All that worried me even more. 

I did not know what was causing it.. 

..was this something he caught from the hospital?

It was a different kind of miserable for him.

Where he was at least finding peace in the baby bath before, it seemed to start making him very uncomfortable. He would barely stay for 5 minutes, where he used to soak and sleep for at least 30.

The rash continued to cover him and he stopped eating again. 

He itched day and night and it was uncontrollable.

As always, up to this point, his albumin was dropping.

He was barely urinating and having bouts of diarrhea again.

We saw our ped multiple times weekly for 2 weeks until we sat down in front of him on July 23 and he told us he was trying to make us an appointment with a GI doctor from Emory Hospital in Atlanta.   

We had exhausted our local hospital and resources and our ped wanted Isaiah scoped to see his gut function. 

At almost 8 months old he would only eat 2.5oz servings of formula and at a max only ate 4oz.

The few 4oz feedings were only eaten a handful of times.

we were in agreement that more extensive testing should be done.

We knew his little body was on the verge of shutting down again and time was running out to wait for an appointment. 

He practically stopped eating altogether and we made a decision to go ahead and drive to Atlanta since it was a 4 hour drive, to stay in a hotel for the night.. 

After our pediatrician spoke to one of the GI doctors, the plan was to go in through the ER in Scottish Rite/Emory Children's Hospital that following morning. 

That night after the drive was one I will never forget. Isaiah was in such pain and had lost so much weight, he looked like a skeleton. The rash was still all over his body after all those weeks and the itch was consuming him. He cried and moaned in misery but again, no tears - too dehydrated.

This was a picture we took of him at the hotel that night.

We barely had 30 minutes of sleep that and we were at the ER at 7am.

I rarely get sick but that night I had a low grade fever and an awful cold on top of it all. I could barely get a sentence out without blowing my nose.

When we went in, many people were trying to ask us what was going on with him, his skin, why we were there 4 hours away from home, coming in thru the ER, etc. etc..

Had to hash out 5 months of pain and suffering, as I blew my way through kleenex boxes..

When was the nightmare going to end....?

They drew blood and immediately admitted him into Ped ICU..

He was much worse than we knew.

Before we ever left our town, we had our peditrician put in Isaiah's file that ALL steriods were an ALLERGY.

Thank God he did that.. 
as crazy as it sounded to everyone we were in contact with at Emory.

The many doctors in Atlanta that we saw in the ER and the GI doctors that came in, smirked and looked puzzled when reading that and we had to explain and explain over and over again.

No one seemed to believe us, but many commented among each other that our ped in Savannah was in agreement with what we were saying and they looked puzzled about that as well.

In the ER, they still put a little red allergy band on his wrist that said 'steroids'. 

Isaiah was in renal failure and his body was shutting down like never before up to that point.

The PICU Doctor said,

"I know his skin looks awful and he is uncomfortable with that, but I am solely focusing on his internal organs at this point, as he is in worse shape on the inside.."

She was so thorough and listened to everything we said.. 

she was curious about his skin and what we had to say about TSW/RSS..

They stuck him every 4 hours for almost 32 hours and then decided to do a picc line - which he had to go into surgery for but ended up so much better for him. 

They drew all blood from it and gave all meds through it 

-- pain free.. 

I was so glad for that..

 .. once he started receiving the vitamin bags, lipids and iv antibiotic he semi-stabilized, the PICU doctor wanted to look through my phone at all the pictures we had taken up to that point. 

I even pulled up Joey's blog and she saw pictures of other kids that looked like Isaiah.

 

We had to tell multiple doctors, over and over again during that 10 day stay that we were NOT, under ANY circumstances using steroids of ANY kind.

None of the doctors or nurses had ever heard of Topical Steroid Withdrawal or Red Skin Syndrome although they said they had treated kids there in that hospital with skin that looked worse than our sons..

Treatment for those other children? 
IV steroids and topical steroids..

Wonder how many of those kids are still out there with "full bodied severe eczema" and are slathering on the steroid creams..?

We saw a dermatologist as well as an allergist the first day in PICU.

The derm didnt say much but discussed how he thought our son might have a disease called 'Netherton's syndrome' and he wanted to take a skin biopsy as well as a hair sample because people with that syndrome have 'bamboo hair'..

We knew he did not have that and everything and every disease that was mentioned, we rebuked it and placed the name of it in my Bible under the scripture that says,

"No weapon formed against you shall prosper and every tongue that rises against you in judgement, you shall condemn."

We agreed to the biopsy on his tummy and for his first haircut to be given by the derm. 

The allergist then walked through the door - super nice guy - but he did everything he possibly could to convince us to use steroids. He looked at our son and told us that he WOULD NEVER improve without steroids. I looked at him in his face and said, 

"That is NOT the God I serve.."

He thought I was crazy.. :)

It turned into an hour+ long conversation of my husband and I saying, "No, No, No, No, No we will not use steroids of any kind.. NO!"

After we adamantly refused no matter what he said, he then asked if we would use immunosuppressants. 

"No! We will not use those either.."

He then said, "You both have tied my hands.."

"Good thing!" I said, 
and my husband agreed..

Too bad we could not tie his lips and tongue as well.. :)

We did agree to antibiotic ointment and said we would try wetwraps for the first time ever.

The PICU doctor took swabs of the ooze on his limbs and they came back positive for staph.

The itchy bumps that he had for the month of July started to clear and he seemed to do well with the antibiotic and antibiotic ointment. Tried the wetwraps for a night and his temp dropped way too low. We decided to use dry gauze wraps with tape instead with bactroban mixed with vaseline and that worked well. 

The severe itching ceased for the most part. 

Praise God!

His kidney function regulated as well as his sodium and potassium. Praise the Lord!

His skin started to clear to the allergist's surprise and he finally quit bugging us about the steroids after a few days. I think people finally realized how serious we were about not using them, everyone seemed to back off as his health was improving so much.

He received albumin and lasix and more lipids and vitamins.

He looked so lively and seemed to be doing so much better.. 

They sent us to a regular room and we stayed for 6 more days.. continuing the lipids and vitamins which is what his little body needed so badly.

We were so glad things seemed to really be turning around for the better! He laughed and smiled over and over again for the first time in MONTHS! 

We were ready to go home as Isaiah had been off the IV bags for 3 days. We talked to the pediatrician and he agreed that we could head home. We only had to meet with the GI doctors and hope they would agree.

Eh..
they were not as willing..

They wanted to see Isaiah gain more weight before we left so they were refusing to let us leave. 

That was not what we wanted to hear.

We told them we were the ones who drove all the way to Atlanta for Isaiah and we would not want to leave if we did not feel he was in a comfortable place to leave.. 
We had been down this road many times.. 
We had a release on the inside to head home and everyone else except the GI docs were in agreement, but again, it was only for the weight gain, and we knew we could work on that from home.

We were away from our daughter for the first time ever and had actually missed her birthday. 
We have never done that and my heart was broken because of it.

I was so ready to get home to see her and was so relieved that Isaiah was doing so well. We had all had our fair share of hospital stays.. 

We were feeling led to go home and promised them that we would follow up with our ped the very next day. 

We were going on our 11th day and on top of it all, knew our stay was getting expensive.

The GI doctors were still refusing..

I was discouraged and tired and the tears started to fall..

I was watching Kenneth Copeland's grandson on TBN talk about patience.. of all things, that had to be the topic that day.. :)

I told the Lord I would do whatever He wanted us to do. If they came back in and still refused, I knew it was His will for us to stay and I would submit to that gladly.

I was standing at the crib as Isaiah and my husband were both sleeping and the room door opened after a light tap.

I thought it was the GI doctors again..

There was a woman who walked over to the crib and said,

"Prophet Isaiah.."

I looked up at her, tears still in my eyes and I thought to myself, "What did she just say..?"

She continued..

"What's your declaration, Man of God? ..

By His stripes, you are healed..?"

My heart jumped.. I did hear her right..

Thank You, Lord for sending this angel in our room right when I needed her!

She was our cleaning lady for the day shift and had read his name on the door as she walked in..

I could not even speak.. I just pointed to the scriptures I had posted on the head and foot of his bed.. 

She smiled and looked a bit surprised at them.. 

She started quoting more scripture and I wiped tears and began finishing her sentences..

I then told her briefly the season we had been in and how we were 4 hours away from home, hoping this was the last of the hospital stays. She said she was not even supposed to be on our floor that day, but last minute, filled in for someone else. I told her she could stay all day! She agreed that she wished she could.. :)

As we chatted, I told her how I had prayed for the healing ministry for our children and how here we were, 3 hospital stays later..

She said, "Oh, you will have that healing ministry.. 

you, your husband and your children.. 

how else would you be able to relate to those sick and suffering, unless you had been here, right where you are.."

She was so right..

..more tears fell..

We had the best conversation for the next 30 mins about the Lord and His goodness, as she, in her helps ministry, served us by cleaning up our floor, our son's bandages, our trash and refilled all of our supplies..

She not only refilled those plastic gloves and paper towels, she was helping refill my soul.. 
xoxo

...........

They tested Isaiah extensively while we were there:

blood tests, stool and urine tests, many multiple different gut tests to see if there was inflammation/leaky gut/etc and to see if he was losing albumin through stool/urine.. immunology and lymph tests and every other test they could think of for all these rare, crazy diseases were also completed. 

EVERY SINGLE TEST CAME BACK PERFECTLY NORMAL!

 Because of the gut tests being normal, they decided not to scope.

We were thrilled! 

Rejoicing.. Praising the Lord!

We knew then, after every other possible disease and syndrome was ruled out that Isaiah was definitely in TSW and we were well on our way to healing as we would soon be stepping into our 3rd month steroid free!

 

They finally agreed for release and we were on our way home..

As we were on our way out of the hospital, we stopped at the gift shop and purchased this canvas for Isaiah.

I love it..

.............

After we got home, Isaiah's health has continued to get so much better!

He has laughed and smiled everyday..
We are not where we want to be, but PRAISE GOD we are not where we were!

The crazy body temp stuff has finally stopped and we can hold him close again and cover him with blankets!

That is worth more than gold! 

Most of the seeping has stopped and his flares have been few and far between. The only places that are inflamed now are the places that topical steroid was actually applied.

He is getting better every single day!

We are still sleeping in the recliner and wrapping his limbs in gauze but I know and believe that will be short-lived.

We went to the ped last Friday and received our first 

GOOD REPORT!

His albumin had climbed, ON ITS OWN! since we were there last week and he has gained 3 lbs in 3 weeks!

He is now almost 15 lbs! Our ped is so happy and so are we!

He is eating more than he ever has, and we are starting him on an organic goat's milk formula this week.. 
continuing to press into healing with our precious son.

Life is getting back on track and I know soon, things will be back to normal in our lives..

We have missed life in general,

our family, our church family and our friends..

We give God glory for all of the blessings he has given us..

 He has us in the palm of His hands and we are defeating the enemy by the Blood of the Lamb and the word of our testimony!

Please contact me if you have any questions about Red Skin Syndrome or know someone who has severe, worsening eczema and have been using topical steroids with no improvement..

God bless you and thanks for taking the time to read our story.. we hope it reaches those who need it, as we were sinking at one time in that sea of hopelessness and the unknown..

There is HEALING and HOPE.. 
press on and NEVER GIVE UP!

xo

www.itsan.org


Next blog entry: Mr Itchy and Mr Scratchy