censorship is not cool!!

See the picture above?  this is why we know our kids do NOT have "eczema any more...and that it is red skin...this is a picture of capillary damage which has been done by the steroids....eczema does not go white when you push on it!!!!!!!!! red skin is a vascular problem not a skin/rash problem!!!!!

 I'd like to introduce you to 2 amazing people....I will call them 'coolest mom ever' and 'brave dude', too keep them incognito!  Brave dude is one of the bravest kids I have ever met. He has been suffering and been treated for "eczema" since he was 2 months old.  His doctors used every kind of steroid they could think of on him and he is paying the price!  Brave dude has never known a life with out insane itch and consuming skin issues!  Coolest mom ever wrote brave dude's story below! 

In her story below she also addresses a Facebook parent eczema support group that has since kicked all the parents with topical steroid addiction kids out of the group.  Here we are parents of children who have been diagnosed with eczema since infancy and we get kicked out of a support group because we know that all of the steroids our children have been given over the years has made their "eczema'  a million times worse and has brought on red skin syndrome.  So, I am sharing her side of it....I do not believe anyone should be censored or kicked out of a support group just because we have a difference of opinion!  I do not wish to fight with anyone that steroids are not good for them or their child, but I know with every cell in my body steroids have ruined Kline's life....we can not get back his SECOND AND THIRD year of life spent in pure agony and isolation. and this I blame on the doctors that over prescribed my son the steroids and never once told me they could be making him worse!  The above pictures are of brave dude, and you can see why I call him brave !!!!  The withdrawal has been terrible for him....possible the worst withdrawal doctor Rapaport have ever seen and definitely the worst he has seen in a child!  Please pray for brave dude, that he heals like the wind! thank you, Loren! 

"My son started exhibiting eczema during his first month of life. We tried all kinds of cleansing routines, lotions, and avoidance of food by myself (I was breastfeeding). Seemed like whatever we did, we couldn’t get it under control. Between 2 and 2 1/2 months of age, we were prescribed our first topical steroid. I was amazed at how well it worked! Within a matter of days his skin would clear up. At nine months of age, he went into anaphylaxis- luckily my husband was with him and did mouth to mouth until medical help arrived. It was then that we also learned he had multiple food allergies (we had started introducing solids at 7 months, he wasn’t interested, so had just recently started introducing solids again). My husband and I have always felt that his eczema and allergies were probably a result of him being premature; we felt his immune system didn’t have time to solidify as much as was needed. So, we went from having severe eczema to now having it along with life threatening food allergies.

As he grew, we also learned that he also had multiple environmental allergies. I say this, because I totally get eczema, food and environmental allergies. It has dominated my son’s life. Thankfully, as he got older, he did outgrow many of his food allergies. We saw that happen between 6-8 years of age. For that I am very thankful. I am, however, saddened when I think of all that he has missed out on because of his skin and allergies.... the having to come in early from playing with the kids in the neighborhood so we could start his nightly routine of showering and moisturizing, him not being able to stay at friend’s houses because I was afraid of what kind of cleaning products they used or what kind of animals they had, not being able to have the treats passed out by others at school, to being teased by the other kids at his school... being called horrific names for something he had absolutely no control over. He didn’t ask to have eczema! Believe me, he would do anything to not have it and be like every other kid out there.

My son has been living with allergies and eczema for almost 13 years. Throughout the years, in addition to the countless allergy meds, cleansers, lotions and topical steroids, we also tried allergy shots. Twice a week for over a year, then tapering down. Sadly after two and a half years we saw absolutely no improvement in his skin or allergies, so we made the decision to stop them, again with no difference being seen, so we truly feel they didn’t help.

The one consistent thing that seemed to be happening is that no matter how diligent we were in his care, his eczema seemed to be getting worse. Visits to the dermatologist were becoming more regular with us usually walking out with a new prescription for a stronger topical steroid until we were using the strongest topical steroid out there (Ultra High, Class I Potency Group steroids). I kept asking what could be going on to make him be getting worse instead of better. Repeatedly we were told that his eczema was probably changing course as he was getting closer to the age of puberty, and unfortunately it looked like my son was going to be one of the ‘unlucky ones’ whose eczema was going to get worse instead of better. That is when the doctor then advised us to do a Kenalog shot-- an intramuscular steroid. We did, and it was amazing! My son cleared up and looked awesome! Fast forward two months and he was back to flaring again, and as has been the cycle for the past few years, the flares were spreading, covering more and more of his body. Back to the derms we would go, only to be told to use the topical steroids more frequently. When that didn’t help, the doctors suggested another steroid shot. The shot was such a traumatic experience for my son, that the doctor then suggested that we do a tapering course of prednisone. It worked quite well, however not all of the ‘eczema’ cleared up. So during the next year and a half, we were prescribed several more courses of prednisone. Although his face and arms would clear up, his rear end, the entire thing, continued to be covered in ‘eczema.’ I clearly remember walking out of the doctor’s office in January, 2012 and my son saying, “I’m probably always going to have this, aren’t I?” It killed me when I had to say, “Yes, I think you probably always will, but hopefully it will lessen as you get older.”

I give all this background information to show you that I am a parent, just like all of you, who has had to live with this beast for many, many years. I get the hell that it is... to be so careful to do absolutely everything right to try and keep your child from flaring; to crying inside when you see your child looking so horrible and miserable compared to the clear skinned child next to them; to wanting to punch the person who belittles your child’s condition by saying, ‘so what, they itch a little?’ or “at least it’s ONLY eczema,” without remotely understanding what this insane, non-stop, rip your skin apart itch is like.

One night, out of sheer desperation, I was searching the internet (like I frequently did), looking for answers about what might truly be happening with my son. Things just didn’t feel right in my gut. We were at the strongest levels of topical steroids, were now doing oral steroids, were diligent on his showering/lotioning, as well a what he came into contact with, yet things were not getting any better. I kept telling the doctors that I feel like we are continually putting a bandaid on the situation and that something more was going on. I would then be told again that unfortunately he is getting close to puberty and was going to be one of the unlucky ones. I just couldn’t accept that! One night, when searching, I came across an article written by Dr. Marvin Rapaport about Topical Corticosteroid Addiction. I was shocked when I read it as it could have been written about my son. I couldn’t sleep that night, because for once in my son’s life, I had hope that he wouldn’t have to live the way he has been for the rest of his life. There is no doubt in my mind that yes, my son did have eczema as a baby and toddler, and yes, his allergies didn’t help it, but that the eczema he has been displaying for the past several years was steroid induced eczema.

I printed out the article written by him, as well as an article written by Dr. Mototsugu Fukaya. I read them as well as took in a copy to my son’s pediatrician. We made an appointment with Dr. Rapaport, who then confirmed the diagnosis. We made the decision to stop using steroids on or in my son. I will not sugar coat it; it has been absolute hell at times. When I would second guess myself and think about using some of the steroids to lessen the flares, it was my son who refused them and told me, “No, they weren’t working before, why would they work now?” He was right. Before we stopped using steroids, I now see what actually was happening is that we would use them, he would clear up, so we would stop using them and 3-8 days later, he would start flaring (i.e. he was starting to go through withdrawals). We would ask him, “What have you ate? Where have you been? What have you touched?” thinking he must have gotten or done something to cause the flare, when in essence, he didn’t do a dang thing! I had! I had NOT given him any steroids. So, we would start the topicals back up, and sure enough, he would start clearing up.

We are currently in our fifth month of withdrawal. It has been a very rough ride, but progress is being seen. We do, however, still have a long ways to go. For those who question whether topical steroid addiction is a reality (my father included), the only thing that I have done differently in my son’s care than I have done for the past 13 years is that I have not put any corticosteroids on or in him since February 2012. Too see how his body is reacting confirms to me that he was indeed addicted to them.

I am forever grateful to Dr. Rapaport that he 1) wrote the article and brought to light the fact that people can and do become addicted to topical corticosteroids and 2) for all of the support he has offered to me, as well as the consulting with my local doctors he has done, to help get us through this process. Do I think he has all of the answers? No. I think he continues to learn more and more about the withdrawal process with each and every patient he helps and I think he is realizing that some things with this crazy process aren’t tried and true for everyone.

Do I think I am crazy or absolutely nuts because I believe my son has Red Skin Syndrome? No. Am I “evangelical” about Red Skin Syndrome & Topical Steroid Addiction? No, but I am passionate about it. I wish I had at least heard about the possibility of it years ago so I could have looked more into it. I could argue the point that some on this forum are "evangelical" about NJH, but there is no point in that. I am glad that that option is out there for parents to investigate, but don’t feel it is my right to belittle those who continually sing its praises or argue with them because I feel that what they are doing is right or wrong, just as I feel it isn’t my right to belittle anyone who sings any treatment option’s praises if I disagree with it. It is my right to take what some people (individuals- with their own thoughts and opinions) are saying regarding treatment options/therapy protocols, investigate it further and make an appropriate decision for myself and my family. Am I saddened about the comments in this post? Yes, very much so. Does it make me sad that because of one or two outspoken people from a forum that I belong to, of who I have absolutely no control over what they do and say, have turned people off from even finding out more information about this condition? Yes. But to lump all of us “RSS” people into one mindset of being crazy, abusive, completely nuts, etc. is not fair or right. There are some very outspoken parents on this eczema board as well; some who say things that I completely disagree with and find ludicrous, however to lump every member of this group under the confines of my feelings towards one or two individuals of this group, is not ethical or right. I also do not feel it is right to attack these people in public forums because their views are different than mine either. I think I am being fair in asking that people on this forum be a little more fair and judicious in what they say and to not start bashing other groups as a whole. I am an educated, professional mother who has spent countless hours, days, years trying to give my son a better life.... a life without eczema, a life without allergies, a life without pain and itching. It has been a hard road for us, just as it has been for all of you or you wouldn’t be participating in support forums. I know that I have finally found the answer for many of our problems. Will it be the answer for all of you? Probably not. Could it be the answer for some of you? Probably so. I just wish that someone had even at least told me about the possibility of this occurring years ago (even if it sounds outlandish and impossible) so I could have either researched it more and acted on it back then, or at least been aware of it so I could keep it in the back of my mind so that if/when our traditional case of eczema turned into steroid induced eczema, I could have started the withdrawals many years earlier so our recovery would have been easier and faster. These forums should be to support each other, and not belittle and name call each other, regardless of what treatment choices we each individually make.

Hope you have a great day!!!"  cool dude's mama!