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