Happy mother's day to all the warrior mama's out there!

If You are a mom, you know you will do anything for your baby, no matter what age!  You never stop worrying about them whether they are infants or adults.  You will never love someone as much as You love your children.  And as soon as you lay eyes on them your heart is open and so vulnerable.  You are changed for good.

When your baby is sick, you are broken. When you can not help them, you weep.  You wish for nothing but taking their pain away.  You fight for them.  You stand up for them.  And you never stop searching for a way to help them. And you pray harder than you have ever prayed in your life.

So, to all of the warrior mama's out there, happy mother's day!  You deserve a metal and you deserve a healthy baby, may that day come for you real soon!!!!  Keep fighting warrior mama's, we can do this and we can change the world!

Love to you all,

One warrior mama to another, Loren xxoooxxoxooooo

A very bad state of Flare!

(Here is a picture of kline and I in the hopital the day he was born, notice he was already haing rashes and red skin, could he have been already addicted becasue of my massive amount of clorbetasol (a high potency topical steroid) used during pregnancy and while breast feeding, is this even eczema?  Dr. Rapaport said that babies do not come out with eczema, the delelope it a few months later...hmmmmm, very interesting!) ((also, please don't mind my huge breastfeeding boobs, they were bigger than the kids head, note I said were!! ;0)  )

 This blog has been a lifesaver for me....it is cathartic and a great vent,sorry for all the cussing and rants!  And I pray it will save at least one person from our hell.

So, thank you all for listening to me and praying for us!!  It is so great appreciated and needed!

Kline's up date:

We are in week 11 of topical steroid withdrawal hell!  And auto correct if you change hell into he'll, one more time I will throw you across the room!! ;-) He is in a very bad state of flare....he is oozing most of the time From tummy, knees, elbow and nipple.  And I must say even though I love my baby with all of my heart, tickling his oozing body is really gross. The ooze is sticky and smelly and just should not be coming out of him!!!! He is not sleeping during the night at all, and I mean at all....we are up till 6 or 7am and then he sleeps till 11am or some days even 1pm.  Crazy how the itchy bastard takes over his body even more so at night. 

 Others that have suffered from red skin, say that at week 16 things start to improve some.....come on baby!  5 weeks can not pass fast enough!  He did let me put him in the bath yesterday and put vasalean on him, yeah, which seemed to help his scabs.  But everything is a fight and the first 5-10 minutes in the tub are terrible with the burning and itching! Then he will not get out, we are talking hours, because it burns and itches so much when he gets out!  Very typical for red skinners.  I pray that he will not remember any of this, but I hope it will make him a kinder person and more compassionate to others! 

Sleep well, itchy little bastard everywhere....and when I say that I am not talking about the person, I am talking about the itchy beast that takes over their bodies!

Xoxoxoxoxoxooxoxox Loren

Not all drugs are good for all people!

This is just a fact of life, some People(and my auto correct just put poodles, which is cracking me up ) and poodle's I guess too, do not do well on some drugs, may be allergic to them, or may become addicted to them while others do not.   I get that, and my doctors get that.  Since birth, I could not be on Erythromycin, I got a terr bloody rash, much like kline's red skin, and never once has a doctor questioned why I can not take that drug. I also had a terrible reaction to a pain killer called ultram, got tingly all over and started to have chest pain after being on it a week.  Yet again the doctor's have never suggested I take it again!   But, with Topical steroids, people do not view these drugs in this way, and I wonder why?  Why do people not question that my son may be having issues because of the massive amount of topical steroids he was on?  Why is this so hard to understand?  Why can't he be reacting to the topical steroids?  People get addicted to all kinds of drugs and there are centers that they can go to to help them withdrawal, and for my poor son, people and doctor's fight whether it is even a real thing.  I just do not understand this?  Maybe it is because our bodies create steroids themselves, so people don't think you can become addicted to them? But, there is a difference between the amount kline's body creates on its own and the amount we were lathering on him, as instructed by our trusted doctors and pharmacists.   I have dear red skin syndrome mama friends, that have actually be accused of child abuse because they took their kiddo's off of topical steroids in order for them to properly withdrawal and get their lives back.  Are you kidding me?  The abuse was not done by the parents, the abuse was in the lack of knowledge our doctors have.  The abuse was in the topical steroid companies hands, when they did not do proper studies to see what the long term affects could be!  The information is out there, published in medical journals about red skin/topical steroid addiction withdrawal, yet no one knows about it?  How can doctor's leave medical school with out this knowledge of a very widely used drug? If they know about thinning of skin,which is the least of our worries, how do they not know about the addiction side of it? The doc's seem to realize if you do not take them your skin will get worse, but they don't question.....could the drug be the problem? They just add more steroids and up potency. And why when we go to a doctor and tell them of red skin, they look at us like monkey's are flying out of our arse's and insist we use the very drug that is killing our babies quality of life.   We ( the parents of the red skinners) are not doing this topical steroid withdrawal for fun!  The steroids stopped working on our healthy babies and started to make them very ill.  Kline would have had to have been on massive amounts of steroids to keep up with his addiction.  His "eczema" started off very mild, just in the hot spots and every time he flared on steroids it would cover more and more of his body.  When he got sick his skin would rash all over.  There were 2 times this year that we went in and the doctor thought he had scarlet fever, even though he tested negative for strep, which in hind sight I now know was his topical steroid addiction.  And when they figured out that it was not strep, the pediatrician reamed me a new one for not pumping him with steroids and antihistamines.  They never once stepped back and asked...... hey, could it be the steroids he has taken all of his life that are causing this problem?   No, they got mean with me, made me feel bad.  So, even though my gut was telling me to stop the steroids, I pushed through kline's burning and put them on him.  Why is there such an allegiance to these drugs?   I am not anti topical steroid, I just wish that I had been warned.  I hope that others are warned, that they can cause red skin, that your skin can become addicted to them, and that it could bring you to the very worst years of your life.   Kline's life has been put on hold because of this withdrawal....he is not a kid right now, he has very few moments where he is not consumed by his itchy monster.  He used to be the life of the party and now he can't even go to any parties.   I hope that this withdrawal will go fast!!!  And I hope that kline's suffering has a purpose, I hope that this is a warning to you all, the warning kline and I never got!   Be careful with your topical steroid use. Please do not over use or use for more than a few days.  If your doctor wants you too use long term or up the dose, question them and ask them too look into red skin syndrome.  Be proactive! I wish I had been. I would give anything if someone had told me this years ago.....sorry to be preachy! Ps Kline is 11 weeks of topical steroids today!!!!! Sleep well, Loren xoxoxoxoxoxooxoxox

"Oh your son has eczema? You know what really cured my step sisters, brothers, 1/2 uncle's , best friend, was unicorn farts? You should try them!"

 And I would have, I would have gone to mount Olympus for a jar of unicorn farts and I would have spend thousands of dollars on them if they could just possibly be the answer to what would help my son with what he is suffering from.  Well, as it turns out now that I know he gas topical steroid withdrawal,  which is NOT eczema, I now know we don't need to try anymore lotions or potions or specialist. We need time, ice, ib pro fin, and some good old sunshine, (also,some  vasaline if I could just get the kid to give it a try). 

So, thank you for all of your suggestions.....there have been tons!  Everyone's tried to be so helpful when it comes to a child suffering, and I thank you all for that!  If anyone happens to have a time machine, I would definitely give that a go, as speedy this next year up to go through withdrawal faster would be priceless! Unlike the unicorn farts! ;-)


Kline's topical steroid withdrawal update- (These pix were yesterday when he was oaaing like crazy....i will show the next days pix later where all the oozing spots turned to scabs! and he couldn"t walk.)

He is in week 10 I think, we do not have an exact date of when we stopped.  He was seeming much better, flaring a few hours on and a few hours off night and day, but 2nights ago, the itchy little bastard, as I like to call his itch, not him, came back with a vengeance.  He is oozing and itching non stop and not sleeping at all.  Now, his oozing skin has turned to scabs all over and he can barely walk because his skin behind his knees is so tight.  This is hell people! No one should have to go through this!!  This morning he asked me if I liked that he itched?  So sad, no baby mommy hates that you itch with ever part of my being, if I could take your pain from you and take it on myself I would, ten fold! I wish mommy could make this better, but I just can't and it breaks my heart.

ps. Kline did not sleep last night at all till 6am...he had the worse itching fits I have ever seen.  ugh!!!

Signed with a tear,
Sleep well, itchy ones!

xoxoxoxooxox

Loren

Things I never want to hear my 3 year old red skin syndrome son say again!!

 kline 10 weeks off steroids!

1. "Anyone save me?!"

As we were itching on the couch he screamed out, " Anyone, save me?" in a question, like can anyone save me! So, heart wrenching! I told Him he is being saved by Dr. Rapaport and we aren't using anymore of those bad medicines that make you sick anymore!!!

2.  While trying to put Kline down for a nap he said,

" I worried mommy!"

I said, what are you worried about baby?

Kline, "I worried about my skin!"

I told him that he was going to get better!

And he said, "when?, soon?"

Well, how do you tell your baby you don't know when but it will happen?  I told him, maybe by the end of the summer!??? Let's hope!!!!

Another heart breaking moment that my baby should not be going through, if our doctors had known what topical steroids could do to his little body.

3. "I too itchy to eat, mommy!"

WTF?  This crap is so debilitating that he can not even eat when he is having an itchy bug fit....how cruel!  Hey, pharmaceutical company's are you getting this?

Number 4-9 I hear pretty much everyday, multiple times a day!!!

4.  "Itch me mommy!"

5. "Save me mommy!"

6. "Itch my pee nee!" , " itch my boob!", "itch my arm pit!" , and the ever so cute, "itch my leg pit!", you name it he asks for it be be itched.

7. " I got the itchy bugs."

8.  "It burns, it burns!"

9. "I so sick , mommy."  Or "I too sick mommy!"

10.  While we were out shopping I really had to pee and Kline said, " go potty quick mommy, if You pee pee your pants it's going to burn!" why? Because, when he has an accident it burns like a mother!  That is probably why he potty trained himself before he was 2!!!! Even clothe diapers bother his bum so much.

11. while I was having one of my crying fits one day, Kline said,

" why you crying mommy?  Here drink some water, it will make you feel better!  "

12. And another day during another one of my crying fits, Kline said,

  "mommy, no you cry, Pick me up!" and then my 3year old wiped away my tears,  Wrong in so many ways!

13. Sometimes 2 hands just aren't enough!

While I was itching him one day he said,

"Itch me with Your  5 hands!" apparently when you have red skin you need 5 hands to itch you, 2 just won't cut it.

14.  "Itch my pee née" , " blow my pee née", and the latest, "pet my pee nee" a little boys penis should not itch and burn so much, because of  the cortisone I was given by his Dr. To put on his diaper rash, his red skin is so bad on his groin and anus.  ( oh, did I tell you , you are Not supposed to put steroids on you face or groin! and definitely not everyday.)

And the most heart breaking, rip my heart out, step on it and grind it in the disposal...........

1 " Hurt me, mommy!!!!!  I want you to hurt me, mommy!"

Dr. Rapaport said that the itching makes them so crazy that they actually like it when they cut themselves with their nails while itching, because at least the pain is a different feeling than the itch.  So that is why my little 3 year old baby want me to "hurt him"by itching him really hard, so he can feel something other than the constant debilitating itch that is red skin syndrome. (ps. even though he begged, I did not hurt him) poor baby!

I am sure there will be more, very sad and pathetic things Kline will say in the months to come of his withdrawal, I'll  keep you posted!

None of these things should ever come out of your babies mouth and I hope to hell you never hear your baby say them!  If you do hear some of these thing, you may want to look into red skin syndrome, aka, topical steroid addiction withdrawal.

One sad mama, xxoo Loren

We went to see the wizard, the wonderful wizard of red skin!

Kline resembled something of a make a wish kid! ;0)

 We were so excited last Thursday to get to go to LA to see Dr. Rapaport and get a little family time too.....well, when I woke up at 6 am after sleeping 2hours, I felt like crap.  Food poisoning , are you kidding me????  My dear husband told me to "buck up!" Thanks hon!  I was so sick, I have never had such disgusting nasty rotten egg burps, I was rotten from the inside out. Luckily, the Hersey squirts and throwing up held off until we were In LA waiting to get our rental car!  Then oh man, it hit me like a ton of bricks! I actually spent many hours sleeping on the bathroom floor because I couldn't make it to the bed.
>
> Mean while, my husband was dealing with Kline and his itchy fits!  I didn't even realize that Kline was getting sick, coughing and wheezing, and having a very hard time breathing, yikes! Could this too be a symptom of withdrawal, he has never had asthma!?!?
>
> The next morning we got to meet the wizard! Enter stage right, DR. Marvin Rapaport! Dermatologist genius!!  It was so nice to see him face to face and get a confirmation that yes, Kline was suffering from topical steroid withdrawal!  We had the answer we had searched so so so long and hard for! Best money we have ever spent!
>
> I was still very sick at this time and Kline seemed to be getting worse by the minute.  That night he could hardly breath....I was ready to run into the LA ER but my husband talked me out of it, something about gun wounds and stabbings! 
>
> So, then next morning we searched for an urgent care that was open and took out crappy insurance!  Finally after 3hours of driving around, Kline screaming and itching the whole time, we found one.


> The dr. Was a total dick about me not wanting to give Kline any steroids to help his breathing.  (I do not understand why doctor's are soooo pro roids???) i am allergic to a antibiotic that  i can never soell right so i won't even try.  I haven't had it since i was a baby and broke out it an bleeding rash much like kline's skin on steroids!!!!  Not one dr. Has ever even suggested i use it, but its ok to give steroids to my son that are killing him? WTF? He finally gave him a breathing treatment, non steroidal! It helped! Thank god!  I apologized for being a bithc but i really wasn't very sorry! ;-)
>
> Then we took Kline to a movie, bad idea....itchy loud screaming fits in a $40 dollar movie, not worth it!

> Then we tried taking Kline to the beach, which after I had my panic attach of the sand hurting his skin, he actually had a blast and exfoliated!! ;-)
>
> At this point I am still running from bathroom to bathroom!  Never again will I eat questionable food!
>
> The next day was Sunday and we were shooting for Disney.  Not the best place to take a kid that pulls down his pants every fifteen minutes and screams at you to itch his "peenee"!!!  So, between the itching fits and the couching/wheezing fits, the poor kid did not have the best time! He loved being on the rides, hated waiting in the lines. And he loved the parade!  Other than that we held Him all day and he looked like death!  He also loved meeting tigger!  And me well, you guessed it, still crapping my brains out! Sorry tmi!!??
>
> Then we saw Rapaport on Monday and flew home, no kid should travel while on steroid withdrawal.  It is just terrible...everyone stares at his itching fits and we were all way to stressed out! 
>
>
> The pluses of the trip...we had great comfy accommodations with awesome soft bedding!! ;-) and we got to meet Dr. Marvin rapaport and get klines diagnosed!
>
> now we wait and wait and itch and scream...and pray that it ends sooner than later!
>
> Xoxoxoxoox
>
> Ps. My stomach is still not right!
> Written from the toilet, Loren 
> ;-)
>

And we have a winner.............

We went to Beverly hills to see dr. Marvin ,Rapaport  the pioneer of the topical steroid addiction withdrawal front and yes people.....we have an answer, we have a cure and with time Kline  will heal!!! Red skin syndrome we are going to beat your ass to the curb and then kick you the hell out of here for good!!!!! We are so blessed to have an answer with a cure, it may take Kline  a year or so to get better but he WILL get better! Had we stayed on the topical steroid route that we were on he would have only had gotten worse and worse and had to have used so much higher doses of steroids.  I am so blessed to have found out about red skin and I will do all that I can to help others find their answers to the cure too!!   Dr. Rapaport thinks that since Kline came out at birth with skin rashes / " eczema", that he could have already been addicted to steroid because I was on a lot of clorbetasol for my vulvadynia/hemroids when I was pregnant with him and breastfeeding him.  So, soon to be mama's, be careful of what You are taking and putting  on you when pregnant and breast feeding!! It could effect your little baby in a very bad way! If I knew then what I know now, I would have never complained about his eczema, it was absolutely nothing compared to this hell his is going through and I would never had put a drop of clorbetasol on my arse! Well, not just my arse but you get the picture! :-) I'll post more tomorrow on our suck ass trip to LA with a child with red skin.......travel of any kind while your kiddo is coming off steroid addiction is a real pain in the arse! Please check out this website it is  the non profit for topical steroid withdrawal network. You can find more info about what Kline is suffering from and  if  you can donate to red skin syndrome ,  so we can help spread the word to help others that are suffering like Kline, that would be awesome!!! http://www.itsan.org/home.html Thank you so much for all of your support and prayers, we need them!! Xoxoxoxxoxoxo Loren.....I heart dr. Marvin Rapaport!!!