Monday, May 5, 2014

Warrior Girl having Fun in the Sun!!!

Here is Warrior girl 1.5 years ago..this was her passport picture taken in-case she was coming to the states to see Dr. Rapaport...she ended up being to ill to travel and was hospitalized right after this pictures.  (sorry for the quality of the picture) but this is a reminder of her terrible, itchy, painful past!
                                 And this is Warrior Girl today Sunny at the Beach!! Amazing!!!!!
One beautiful sun bathing beauty!!!


Warrior girls feet before and now!! Red skin gone replaced by red pretty nails!
Warrior Mama and Warrior girl got a much need vacation!!! Although warrior girl was a little itchy on their trip, she had fun playing in the sand and the sun which never would have happened last summer!  Warrior mama thinks that warrior girl got itchy on vacation because of the food they had to eat, not her usual diet at home.  Hopefully soon warrior girl can be completely itch free!!! Warrior girl is now 26.5 months off topical steroids, which she was on for 2.5 years for severe eczema.  Way to go Warrior girl!!! We love you!!!!!

Sunday, February 23, 2014

Sleeping beauty!!

Finally After more than 2 years of not sleeping through the night, Warrior girl sleeps 9 hours a night!!!
The smiley faces means she slept through the night!!

News flash, call the presses!!!
After not sleeping but a few minutes or hours at a time for the last 2 years, warrior girl is sleeping through the night!!! 8-9 hours!!!!

Her mother is so happy!  Warrior mama is not sure if she is sleeping because the itch has gotten better or because she ripped the carpet out of warrior girls bedroom...but she is sleeping and this is huge! 

The lack of sleep during topical steroid addiction withdrawal is insane......the itch takes over at night when your natural cortisone levels drop and no one gets to sleep. So for a parent you can really go crazy without sleep and it's not only for one night but for years at a time!  So, for warrior girl to be sleeping again is a huge win and means she is close to ending her withdrawal journey, hopefully!

Warrior girl reached her 2 year mark off topical steroids Feb. 26th and her skin is looking so amazing!  She is still itchy and has a few spots of rashy skin but her skin is so much better than when she started the tsa (topical steroid addiction) journey 2 years ago.  She and her mama are getting their lives back slowly but surely and thank god for that!

Let's hope that soon we will be posting that her itch is completely gone and that this withdrawal process with be a bad nightmare from their past.

Tuesday, October 15, 2013

Warrior girls story!

 Warrior Girl's story of topical steroid addiction and withdrawal Three years old

'Our story began 3.5 years ago when Warrior Girl was just 3 months old. It all started on her cheek with a little redness that I thought it was heat rash.  When the rash didn’t go away I (unfortunately) took her to the doctor who advised me it was eczema and gave me a prescription right away for topical cortisone, telling me to use it twice a day until it goes away. As a first time mom not knowing anything about eczema or steroids, I trusted the doctors and did what they told me to do. I started using the steroid on her cheek as needed, as directed, but found it wasn't helping the rash improve and actually was making her cheek worse. I stopped it right away and went back to the doctor who then prescribed a different kind of topical steroid which also seemed to make the rash worse. I went back again and consulted with yet another doctor who gave me another steroid. This one helped her for awhile.

In 2 short weeks I got 3 different prescriptions to 3 different topical steroids to try and was told to use them twice a day until the rash disappears. Per doctors' instructions, I used them on and off for 2 years because this is how long the rash persisted. There were no questions asked by the doctors I saw.  As she was getting older she started to show signs of classic eczema on usual spots behind knees, ankles, wrists, etc.  Unfortunately, at this point the steroids didn’t help much.  Warrior Girl scratched herself bloody numerous times and woke up throughout the night scratching. The rash had spread across her body, her back and tummy.

In October 2012 she was covered in a full-body red rash and relentless itching and now I suspect burning which a two-year-old is not able to describe in words.  I took her to a dermatologist who gave me another prescription for 3 different strength of  steroids, one for her face only, one for her diaper area and Derma-smoothe oil for the rest of her body. I was instructed to use it twice a day every day as I was told this was the standard protocol for managing eczema. I found that if I tried to stop for even one day she got ten times worse. She was still not sleeping through the night and was still scratching relentlessly despite me following the doctor's orders, exactly how the doctor prescribed it.  I didn't know what to do at this point and was desperate for an answer.

After 2 weeks with no improvement at all I began searching for other alternatives online and that’s when I found and my eyes were opened to the possibility that topical steroids could be causing the worsening rash.  ITSAN explained how some individuals can become addicted to steroids.  For the first time, something made sense to me as Warrior Girls's story was so similar to the others I read about, others who had healed from topical steroid addiction.  I knew in my heart that I had to completely stop all steroids right away and give this a try. All symptoms pointed to steroid addiction.

As soon as I stopped them, our nightmare began, well I suppose it continued because even before we stopped steroids, due to Warrior Girl's body reacting in a negative way to steroids, we didn't really have a quality of life. But now, it got even worse as the withdrawal for Warrior Girl was extremely painful. I had no idea what was ahead of us.  I only knew that steroids didn’t help her and I had to try something else.

She turned red, had full body oozing, pain, all night screaming, etc. We both slept a total of 2 hours a night if we were lucky. I had to quit my job to care for her.  To try and describe the withdrawal process to someone who has not been through it themselves or with a child, there are no words to adequately capture how horrible this experience is. Others do not understand.

She was bedridden for 4-5 months. We were completely housebound for 6 months. Nobody understands the pain, the sacrifice and the nightmare of going through steroid withdrawal, but they also do not understand that for some individuals who are getting worse with steroids, that complete cessation is necessary.  What most people also don't seem to understand, even doctors is that steroids ruined our life even though I was told that they would help improve the quality of my daughter's life. That was simply not true in our case...and for many others. I had to put my life on hold for 18 months.

Warrior girl has just started enjoying her life again as she is almost healed, but the healing process for me is far from over emotionally, physically, financially, the steroid withdrawal aftermath is just as painful to deal with, piecing my life back together slowly.  How do you wipe 18 months (and the years prior to that) of pure torture from your mind, knowing that the very thing you were using to try and manage the skin rash was actually making your child sicker and worse, no one wanted to listen to me. I had to fight doctors on it, the entire medical system.

No thanks to any of the doctors I took her to see, but rather thanks to education about steroid addiction, my daughter is now starting Kinder camp at three and a half years old and for the first time I cried not because she was in pain, but because she skipped off with a little friend and didn't look back. She is finally starting to live life how other children are – happy and almost care-free of her skin. She’s started kindergarten in September. 

We are slowly getting our lives back, but again, it is a process in and of itself. It’s still not over yet. We still have a little ways to go, but she is doing so much better and is doing better now than when she was using topical steroids.

I would never use steroids on her ever again and I’m very sad and angry at how the doctors prescribe steroids to babies and children like it is a cure all medicine and they say how safe it is with such confidence. It’s very sad how the doctors fail to tell us that steroid could cause addiction and ruin our lives, ruin a childhood with devastating consequences. My daughter was robbed of 3 years of her childhood.  Instead, she was suffering immensely. Even today, I am learning that doctors when told about the possibility of steroid addiction ignore parents and don't take the time to look more into it, educating themselves on this devastating side effect.  They just say the parent is wrong and imply they are crazy for stopping steroids, implying that she shouldn't listen to everything they read on the Internet. This is devastating to so many parents who know they are right and the doctors are wrong. 

As a new mother the only thing I knew about steroids is that it could possibly thin the skin. Later on I learned that should have been the least of my worries/problems as far as possible side effects from steroids. Had I only known sooner, or found ITSAN sooner we wouldn’t have had to go through the pain, the nightmare we have been through.  This ordeal has changed who I am as a mother, as a person, changed who Warrior girl is as a little girl, nearly destroyed our life.  Sadly, we are not the only ones to go through this, nor will we be the last.

I am determined to help other mothers and kids so nobody has to go through what we went through. I want to let people know that steroids are not the only option to treat eczema and they need to be very careful how to use it or and for how long. The doctors are not prescribing it properly and the treatment protocols for managing chronic skin issues need to be re-evaluated, safety re-considered in light of this side effect becoming more widely known. Everyone should know about possible addiction and long-term effect of steroid use so that they can make an educated decision about what to do for their child.  It is a crime to have lack of information ruining the lives of so many innocent children and families who think they are doing what is best for their child and told by doctors that this is best.

Doctors and the medical system at large needs to take more time with patients to try and get to the bottom of possible triggers to eczema which I am learning, people often uncover in time when they don't just suppress the immune system with steroids.  I wish I had known about this when Warrior Girl first broke out in a tiny rash on her cheek. I would've left it alone. Parents/doctors need to be educated on diet being a possible trigger for young babies and detergents in the environment like they do in other countries.  To have topical steroids as a first line of treatment on such young children without taking the time to figure out possible triggers first is criminal.  Then, not to support a parent and child going through steroid withdrawal is just inexcusable.  Had it not been for, I would have been completely alone in this nightmare. This needs to change and parents like me are not going to stop until something is done about it!'

Warrior Girl's Mama, Warrior Mama! 

To see Warrior Girls photo progress see other posts below!

Warrior Girls healing pictures at 1.5 Years off topical steroids

18 months off of topical steroids, prescribed for Eczema.

Warrior Girl traveled to British Columbia to go to a healing hot springs spa.
At 20 months off topical steroids, Warrior girl is not 100% Healed but she is getting there and starting to enjoy life again like a normal little girl!!!!

First day of school...this would not have been possible 1.5 years ago, Yeah!

The true Warrior parent, a Single mom who had to quit her job for 1.5 years to care for her beautiful daughter!  Mother of the year!!!!!

And life begins!

Meet Warrior Girl and learn how she beat topcial steroid addiction!!!

Picture on left is Warrior Girl in the hospital , picture on right is her today. Beautiful!

Her sweet little hand during the withdrawal process.

She lived in the tub for months as that was her only relief.

Poor poor baby!

The classic elephant skin that is caused by the topical steroids.

Progress takes so long, but healing does occur eventually!